Josiah has had another relatively calm day. He's had funny heart rhythms that a number of fellows and doctors have been trying to figure out. An EP (electrophysiology) fellow was consulted and he seemed quite fascinated with what he was seeing. If I heard correctly, he hypothesized that Josiah may have two AV nodes firing, given that he has right atrial isomerism. They were going to study his ECG reports. I haven't heard if they've determined what's actually happening but he's currently on continuous pacemaker at 165 bpm as well as medication to maintain a correct rhythm. He's also on a cooling blanket set to 35 degrees.
Josiah had a sponge bath today and another bed sore was found on his head but it hasn't opened so there shouldn't be risk of an infection. He is quite puffy. Once the rhythm issue has been sorted out, I believe they will increase his lasix which will reduce the fluid. He takes a lot of muscle relaxant and sedation to keep him from moving.
I feel guilty writing that I had a good nap this afternoon, knowing that Graham is at least as exhausted as I am and he's been at work all day. He'll come with Isaac tomorrow morning. I'm going to work on some laundry now. Hopefully the rest of the residents don't have the same idea.
It's August 31 and I arrived here on July 31. It's amazing to think of all that's happened over the month. God is so faithful and His grace is more than sufficient.
I've been listening to the song, "I Lift My Eyes Up" this week based on Psalm 121 and today someone sent me the same verses:
I lift up my eyes to the mountains—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
I can't imagine not knowing where my help comes from. He never sleeps but He "grants sleep to those He loves." (Psalm 127:2). Only once have I been unable to sleep when I tried to nap during the day. I haven't missed sleeping one night (though the nights may have been shorter than I would have liked, usually due to pumping). Thank You Lord for the gift of sleep!
Blessings,
Elizabeth
Friday 31 August 2012
Thursday 30 August 2012
Low drama day
It was nice to have a quieter day and be able to catch up on some sleep. Ever since he came out of surgery yesterday evening he has done better than the doctors and nurses had expected. He's still very fragile but he is tolerating all his drugs and his numbers are looking good. When we said goodnight a short while ago his oxygen saturation levels were around 82. He's much less blue than he has been these past few weeks. His heart did have some weird rhythms today but this wasn't too surprising to the staff, and they have been treating it with different medications.
The surgical resident (Elizabeth's former classmate) dropped by Josiah's bedside before we left for the night. He told us that after Josiah's AV valve was fixed and he was taken off the heart and lung machine, his numbers just shot up. He felt that the valve repair was a key breakthrough. Earlier in the evening when Graham was talking with the staff physician, Graham said that it was the "icing on the cake". The staff physician quickly corrected him and said, "No, it WAS the cake". We are praying that the valve remains intact and that as Josiah grows that the changing shape of the repairs won't cause leakage.
Barring any dramatic changes with Josiah during the night, Graham is returning to Kitchener first thing in the morning in order to be at his work for the day. He will return to Toronto on Saturday morning with Isaac and they will stay for the long weekend.
Lord willing Josiah's status will continue to improve and that they'll be able to close his chest before too long. He's under a constant dose of muscle relaxant and pain medication so that he's comfortable. As he improves, they'll begin to lift the muscle relaxant but keep him sedated appropriately so that he doesn't try to touch his chest or the central and arterial lines.
Thanks again for following along on this journey and for your encouraging emails and comments. We feel so blessed to have such an excellent team helping Josiah, and to have such a wonderful team helping us! Of course we also couldn't get through this without God's abundant peace and provision.
Blessings to you all.
Graham and Elizabeth
The surgical resident (Elizabeth's former classmate) dropped by Josiah's bedside before we left for the night. He told us that after Josiah's AV valve was fixed and he was taken off the heart and lung machine, his numbers just shot up. He felt that the valve repair was a key breakthrough. Earlier in the evening when Graham was talking with the staff physician, Graham said that it was the "icing on the cake". The staff physician quickly corrected him and said, "No, it WAS the cake". We are praying that the valve remains intact and that as Josiah grows that the changing shape of the repairs won't cause leakage.
Barring any dramatic changes with Josiah during the night, Graham is returning to Kitchener first thing in the morning in order to be at his work for the day. He will return to Toronto on Saturday morning with Isaac and they will stay for the long weekend.
Lord willing Josiah's status will continue to improve and that they'll be able to close his chest before too long. He's under a constant dose of muscle relaxant and pain medication so that he's comfortable. As he improves, they'll begin to lift the muscle relaxant but keep him sedated appropriately so that he doesn't try to touch his chest or the central and arterial lines.
Thanks again for following along on this journey and for your encouraging emails and comments. We feel so blessed to have such an excellent team helping Josiah, and to have such a wonderful team helping us! Of course we also couldn't get through this without God's abundant peace and provision.
Blessings to you all.
Graham and Elizabeth
Doing well
Josiah had a good night and is doing well this morning. When we called the nurse before bed last night she thought they were going to put him on nitric oxide. That either didn't happen or he was only on it for 10 minutes. They were expecting to have a busy night but instead they've been able to slowly start weaning his medications and they started him on lasix. He doesn't even look incredibly puffy. After his first surgery he was definitely a sumo wrestler.
He is still on muscle relaxant but they may start lifting that as well. If he's relatively calm he could even wake up but his chest is open so they couldn't have him moving around much. In the past he's often thrashed around a lot when coming off the muscle relaxant and sedation. I asked about his pain levels in terms of having an open chest but the nurse said it shouldn't be painful and he would be in more pain after they close his chest (he would be fully sedated during that procedure).
It's time to go and pump. Graham's back at RMH doing some work. We're hoping for a calm day with time to do some laundry. We thank and praise God for His awesome works. I was thinking this morning that if Josiah had been able to get off the heart and lung machine after the new shunt was added, the surgeon may not have fixed his valve which now works perfectly. Thank You Lord!
Thanks for your prayers everyone!
Blessings,
Elizabeth
He is still on muscle relaxant but they may start lifting that as well. If he's relatively calm he could even wake up but his chest is open so they couldn't have him moving around much. In the past he's often thrashed around a lot when coming off the muscle relaxant and sedation. I asked about his pain levels in terms of having an open chest but the nurse said it shouldn't be painful and he would be in more pain after they close his chest (he would be fully sedated during that procedure).
It's time to go and pump. Graham's back at RMH doing some work. We're hoping for a calm day with time to do some laundry. We thank and praise God for His awesome works. I was thinking this morning that if Josiah had been able to get off the heart and lung machine after the new shunt was added, the surgeon may not have fixed his valve which now works perfectly. Thank You Lord!
Thanks for your prayers everyone!
Blessings,
Elizabeth
Wednesday 29 August 2012
Surgery went well!
The surgeon met with us to let us know that the surgery went well. He was very pleased with what they were able to accomplish. They took down the Glenn shunt, took down the Central shunt, added a Modified BT shunt, fixed his inlet valve, and returned Josiah to the CCCU without ECMO! We are praising God for answers to prayer and such an amazing medical team.
After adding the BT shunt they tried to take Josiah off the by-pass machine but they were unable to do so. They then repaired his valve and he was able to come off the machine. He initially came out with low blood pressure but he slowly and steadily had better numbers. There was some debate about whether or not to put him back on ECMO but three surgeons, the staff physician, and the anaesthetists made the judgement call to leave him off of it. He is ready to be hooked back up if necessary. There are both benefits and risks to being on or off ECMO. His saturation levels were 80-85% which is the target. Anywhere between 70 and 90 is fine for him.
The shunt is a bit big for Josiah so there is still a question of whether or not they will need to make it smaller. Right now Josiah's numbers are leaning one way and thus all his medication is adjusted to that. The expectation is that Josiah will start to lean the other way and the transition time can be dangerous if he can't cope with it. The surgeon said it's a race between the heart recovering to deal with the extra flow and the lungs starting to behave normally.
Josiah's inlet valve goes into both ventricles so it consists of seven leaflets instead of just three. Valves are very difficult to fix in babies but his valve is no longer leaking at all!
We met with the surgeon around 7:30, eleven hours after we left Josiah. Both we and the surgeon expected they would be in the OR longer. The timing of our meeting was perfect. Isaac and the grandparents were almost ready to leave so we were able to celebrate and thank God together before they ventured home.
The surgeon told us to expect some bumpy times ahead. There is still the possibility that the shunt will need to be made smaller. We're praying that Josiah will continue to heal and recuperate in God's perfect timing. He's been through a lot.
We can't thank you enough for all of your prayers, love, support, emails, and comments. We'll continue to keep you updated on Josiah's progress.
We look forward to seeing our boy in a few minutes. He's our little miracle, and a blessing from God. Lord willing after a visit with him we'll be able to get some sleep tonight.
Psalm 91:2 I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust."
Blessings,
Elizabeth and Graham
After adding the BT shunt they tried to take Josiah off the by-pass machine but they were unable to do so. They then repaired his valve and he was able to come off the machine. He initially came out with low blood pressure but he slowly and steadily had better numbers. There was some debate about whether or not to put him back on ECMO but three surgeons, the staff physician, and the anaesthetists made the judgement call to leave him off of it. He is ready to be hooked back up if necessary. There are both benefits and risks to being on or off ECMO. His saturation levels were 80-85% which is the target. Anywhere between 70 and 90 is fine for him.
The shunt is a bit big for Josiah so there is still a question of whether or not they will need to make it smaller. Right now Josiah's numbers are leaning one way and thus all his medication is adjusted to that. The expectation is that Josiah will start to lean the other way and the transition time can be dangerous if he can't cope with it. The surgeon said it's a race between the heart recovering to deal with the extra flow and the lungs starting to behave normally.
Josiah's inlet valve goes into both ventricles so it consists of seven leaflets instead of just three. Valves are very difficult to fix in babies but his valve is no longer leaking at all!
We met with the surgeon around 7:30, eleven hours after we left Josiah. Both we and the surgeon expected they would be in the OR longer. The timing of our meeting was perfect. Isaac and the grandparents were almost ready to leave so we were able to celebrate and thank God together before they ventured home.
The surgeon told us to expect some bumpy times ahead. There is still the possibility that the shunt will need to be made smaller. We're praying that Josiah will continue to heal and recuperate in God's perfect timing. He's been through a lot.
We can't thank you enough for all of your prayers, love, support, emails, and comments. We'll continue to keep you updated on Josiah's progress.
We look forward to seeing our boy in a few minutes. He's our little miracle, and a blessing from God. Lord willing after a visit with him we'll be able to get some sleep tonight.
Psalm 91:2 I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust."
Blessings,
Elizabeth and Graham
Eight hours and counting...
Eight hours have come and gone and we haven't heard any updates yet from the operating room. We are holding to the surgeon's advice "Don't watch the clock" and "No news is good news".
Isaac brought both sets of grandparents to visit this afternoon, so we're all having a great time watching his antics. He's a bundle of joy.
Thanks for your prayers everyone! We really appreciate all the comments on the blog and the emails -- they are very encouraging.
Blessings,
Graham and Elizabeth
Isaac brought both sets of grandparents to visit this afternoon, so we're all having a great time watching his antics. He's a bundle of joy.
Thanks for your prayers everyone! We really appreciate all the comments on the blog and the emails -- they are very encouraging.
Blessings,
Graham and Elizabeth
And...he's in
August 29, 2012
They wheeled Josiah into the operating room around 8:30 this
morning. The team was able to
accomplish what they wanted to do by putting Josiah on ECMO last night. His body was given a break and he had
started peeing again – a good sign. We praise God for this.
He’s in a better state to go into the OR than he was last night.
We left Josiah around 11:30 last night and we were able
to sleep well until we awoke to the alarm.
Last night was the first time we’ve seen Josiah with pink lips and
oxygen saturation levels of 99%!
It certainly seemed odd at first.
We could see his deoxygenated blood coming out of his chest in tubes and
then the oxygenated blood going back into his body. As he was on ECMO, they were also able to filter out a lot of
the extra fluid in his body, which they wouldn’t have been able to do
otherwise. Before we said goodbye
this morning we prayed with Josiah and sang him the song we sing to our boys
each night.
Josiah’s anaesthetist for today’s surgery reminds us of our
Auntie Celia. Upon introduction
this morning, in her terrific British accent, she let us know that the OR frequent
flyer miles are pitiful. Nothing
like some dry British wit to start the day. These extra gifts from God are such a blessing.
Thanks so much for all the comments and emails. They mean a lot to us and help us
through the day. We may not hear
anything for a long time, but will try to post when we know some more.
Blessings,
Elizabeth and Graham
Tuesday 28 August 2012
ECMO and Surgery Prep
Tonight our pastor from Waterloo came to visit. He and I (Graham) were at Josiah's bedside when Josiah experienced another SVT (sudden increase in heart rate ie. 240 bpm). The staff physician and fellow quickly started to use the external pacemaker to short circuit the system and bring the heart rate down. However, during that event, the staff physician let me know that Josiah's stats were trending down and they were applying an increasing level of meds to help his blood pressure. He also shared that Josiah's urine output had been very low for the last three hours and that there were potential signs of ischemia (lack of blood flow) to the brain. Therefore, they were going to put Josiah on the heart and lung machine (ECMO), as soon as possible.
My pastor quickly prayed with Josiah and then we headed downstairs to get Elizabeth, and she and I headed into Josiah's room while my pastor waited patiently with our bags. The staff physician again explained the reasons for the choice to use ECMO (i.e. signs of organ damage, decreasing blood pressures, too much medication) and the risks of ECMO (clotting, bleeding, lung damage). He also explained that the hope is still to have Josiah ready for surgery first thing in the morning. After a few minutes of Mommy and Daddy time with Josiah we said our good byes and headed back to the waiting area.
We had a nice time of discussion and prayer with our pastor before he had to return to Waterloo. After about an hour the surgeon came out to see us and said that everything went well and that Josiah's numbers were looking much better and that they were able to get him off most of the medications they were using to control his blood pressure. Thank you Jesus! The surgeon said they'll continue to monitor his progress over the next hours, and that the game plan is still surgery for Josiah in the morning if all goes well.
There were certainly some tense moments (Elizabeth here). It's hard to wonder if I'm asking Josiah to fight too much. He's been through a lot. I look back at the picture of him in my arms the night before his first surgery. It looks like trust in his eyes. I want to tell him that it will all be alright and that we'll get to take him home.
We don't know the ending to this story. We want God's powerful hand to be seen by all involved with Josiah.
On another note, Isaac has been missing his mommy and daddy the last couple of days. He's a smart little boy who knows something is wrong. Please pray that he'll be comforted.
Alright, the nurse just came to say we could go in so I'll sign off. Thanks so much for your prayers and encouraging words!
Blessings,
Graham and Elizabeth
My pastor quickly prayed with Josiah and then we headed downstairs to get Elizabeth, and she and I headed into Josiah's room while my pastor waited patiently with our bags. The staff physician again explained the reasons for the choice to use ECMO (i.e. signs of organ damage, decreasing blood pressures, too much medication) and the risks of ECMO (clotting, bleeding, lung damage). He also explained that the hope is still to have Josiah ready for surgery first thing in the morning. After a few minutes of Mommy and Daddy time with Josiah we said our good byes and headed back to the waiting area.
We had a nice time of discussion and prayer with our pastor before he had to return to Waterloo. After about an hour the surgeon came out to see us and said that everything went well and that Josiah's numbers were looking much better and that they were able to get him off most of the medications they were using to control his blood pressure. Thank you Jesus! The surgeon said they'll continue to monitor his progress over the next hours, and that the game plan is still surgery for Josiah in the morning if all goes well.
There were certainly some tense moments (Elizabeth here). It's hard to wonder if I'm asking Josiah to fight too much. He's been through a lot. I look back at the picture of him in my arms the night before his first surgery. It looks like trust in his eyes. I want to tell him that it will all be alright and that we'll get to take him home.
We don't know the ending to this story. We want God's powerful hand to be seen by all involved with Josiah.
On another note, Isaac has been missing his mommy and daddy the last couple of days. He's a smart little boy who knows something is wrong. Please pray that he'll be comforted.
Alright, the nurse just came to say we could go in so I'll sign off. Thanks so much for your prayers and encouraging words!
Blessings,
Graham and Elizabeth
A change of plans
We're beginning to expect that all plans change. We found out around 5:30 that the doctors decided not to take the clip off of the central shunt. They decided not to rock the boat and to try to keep him stable until the morning. The plan is to go for surgery around 8:00 AM tomorrow morning. The expectation is that the surgery will be very long. The surgeon will need to reverse two of the previous surgeries and add a new shunt. The surgeon will take down the two Bilateral Bidirectional Cavopulmonary shunts (the Glenn), take out the Central shunt and add a modified BT shunt.
We thank God for the wisdom He gave to the team today and we're expecting the same tomorrow. We'll arrive at the hospital tomorrow morning before 7:00. We're currently having a nice visit with our pastor.
Thanks so much for all your prayers!
Blessings,
Elizabeth and Graham
We thank God for the wisdom He gave to the team today and we're expecting the same tomorrow. We'll arrive at the hospital tomorrow morning before 7:00. We're currently having a nice visit with our pastor.
Thanks so much for all your prayers!
Blessings,
Elizabeth and Graham
Taking the clip off
The team has decided to remove the clip that is currently keeping the central shunt narrowed. This is the clip that was added last night when they needed to open him up again in his room after the surgery. This procedure will also take place in his room with the surgeon, staff physician, and other support. This should happen soon.
They are hoping to increase the pulmonary blood flow but not increase the pressures in the head. If both those feats can be accomplished, Josiah's oxygen saturation levels should increase. This procedure will at least provide them with more information to help them determine next steps.
There was also debate about whether to put Josiah on ECMO (heart and lung machine) in order to decrease his head pressures and increase his saturation levels but this might make him a worse candidate for surgery as ECMO can negatively affect the lungs. If they decide to do surgery it sounds like it would be a longer surgery than yesterday so they would be more comfortable if he were in a more optimized state.
We are getting so much support here. We have pager numbers for the chaplain, social worker, and a nurse practitioner. The nurse practitioner will keep us updated about the procedure as we are not allowed in the room as it happens.
Thanks for all your prayers! We truly have the peace that is beyond understanding.
Blessings,
Elizabeth and Graham
They are hoping to increase the pulmonary blood flow but not increase the pressures in the head. If both those feats can be accomplished, Josiah's oxygen saturation levels should increase. This procedure will at least provide them with more information to help them determine next steps.
There was also debate about whether to put Josiah on ECMO (heart and lung machine) in order to decrease his head pressures and increase his saturation levels but this might make him a worse candidate for surgery as ECMO can negatively affect the lungs. If they decide to do surgery it sounds like it would be a longer surgery than yesterday so they would be more comfortable if he were in a more optimized state.
We are getting so much support here. We have pager numbers for the chaplain, social worker, and a nurse practitioner. The nurse practitioner will keep us updated about the procedure as we are not allowed in the room as it happens.
Thanks for all your prayers! We truly have the peace that is beyond understanding.
Blessings,
Elizabeth and Graham
Morning Report
We just went in to see Josiah and heard the update from the staff physician. When we arrived at the hospital they were doing a procedure so we needed to wait an hour before we could go to his room. They had hooked up a machine that measures the amount of blood flowing through whatever vessel they are measuring.
Josiah is in a very fragile state. He isn't better or worse than he was when we left him last night. They will look at his numbers over the next couple of hours and then they will decide if he needs to go to the OR and what needs to happen.
There is some conflicting data but it looks like he needs more blood to the lungs. They could remove the clip that is currently narrowing the central shunt or they could take down the bilateral Glenn shunt. His sats are in the 50s which is low but still okay in terms of the brain. The pressure is high in his two superior vena cava so they need to make sure that there is enough blood pressure to send the blood all the way to the brain. That's why they sometimes have to use the external pacemaker to give him an artificially high heart rate. They have also had to use the pacemaker a few times to correct the heart rate when it has suddenly jumped too high. He is on a ton of medication.
Please pray for wisdom and energy, particularly for the staff physician and the surgeon both of whom would not have had much sleep last night.
We hope Josiah will one day be the coolest kid in the class on show-and-tell day when he shows his scars and tells his heart stories, thanking God for his mercies and blessings.
Thank you for continuing to pray!
Blessings,
Elizabeth and Graham
Josiah is in a very fragile state. He isn't better or worse than he was when we left him last night. They will look at his numbers over the next couple of hours and then they will decide if he needs to go to the OR and what needs to happen.
There is some conflicting data but it looks like he needs more blood to the lungs. They could remove the clip that is currently narrowing the central shunt or they could take down the bilateral Glenn shunt. His sats are in the 50s which is low but still okay in terms of the brain. The pressure is high in his two superior vena cava so they need to make sure that there is enough blood pressure to send the blood all the way to the brain. That's why they sometimes have to use the external pacemaker to give him an artificially high heart rate. They have also had to use the pacemaker a few times to correct the heart rate when it has suddenly jumped too high. He is on a ton of medication.
Please pray for wisdom and energy, particularly for the staff physician and the surgeon both of whom would not have had much sleep last night.
We hope Josiah will one day be the coolest kid in the class on show-and-tell day when he shows his scars and tells his heart stories, thanking God for his mercies and blessings.
Thank you for continuing to pray!
Blessings,
Elizabeth and Graham
Good Morning
We stayed with Josiah until midnight last night and then walked back to RMH. We were able to sleep well until the alarm woke us at 6:30 (pumping time). I called the night nurse who said she had a busy night. Josiah's heart rate went into a funny rhythm but they gave him medicine and the rhythm returned to normal. He was put on a cooling blanket to help decrease his heart rate. Later he was put on a pacemaker because of lower blood pressure. The pacemaker is currently set at 170 beats per minute. The oxygen saturation levels have been the problem overnight. They've been in the 50s. The staff physician and the surgeon were at his bedside discussing next steps when I called just before 7:00.
We are getting up now and will eat some breakfast before heading to the hospital. We're thanking God for getting Josiah through the night and for such an amazing medical team. "His mercies are new every morning."
Thanks for your prayers! We'll keep you posted.
Blessings,
Elizabeth and Graham
P.S. We've heard from a number of people that it's difficult to post comments on the blog. We are sorry about that. We have changed some settings to try to make it easier to post. Hopefully that will help.
We are getting up now and will eat some breakfast before heading to the hospital. We're thanking God for getting Josiah through the night and for such an amazing medical team. "His mercies are new every morning."
Thanks for your prayers! We'll keep you posted.
Blessings,
Elizabeth and Graham
P.S. We've heard from a number of people that it's difficult to post comments on the blog. We are sorry about that. We have changed some settings to try to make it easier to post. Hopefully that will help.
Monday 27 August 2012
Trajectory Positive
The staff physician and surgeon just spoke with us. Things have settled down a little (thank You Jesus!). He is still very fragile; his chest is open and he is on a lot of medication but the current trajectory is positive. The team has decided that surgery would not bring great benefit right now so they will manage this medically for the time being. They warned us that he may need to go on ECMO in the night if he destabilizes. They are watching how he responds to treatment over the next 24 hours and there will be an evolving discussion with the entire cardiac team as to next steps.
God is at work and we thank Him for His presence. We'll be able to see Josiah in about ten minutes. Hopefully this will be the last blog post for the night.
Thanks for your prayers!
Blessings,
Elizabeth and Graham
God is at work and we thank Him for His presence. We'll be able to see Josiah in about ten minutes. Hopefully this will be the last blog post for the night.
Thanks for your prayers!
Blessings,
Elizabeth and Graham
Holding Pattern
There has been a change of plans (as of 9:00 PM). The surgeon just came and spoke with us. Josiah is a little more stable now so the OR team has been put on standby. They'll continue to monitor his progress for another half hour to decide if he needs further surgery tonight. We'll update as we know more.
Thanks for your prayers.
Blessings,
Graham and Elizabeth
Thanks for your prayers.
Blessings,
Graham and Elizabeth
URGENT: Back into OR
The staff physician of the Cardiac Critical Care Unit just came and spoke with us. Once Josiah was in his room he destabilized and the team needed to open his chest and clamp the shunt. His blood pressure went very low but his heart didn't stop. He's heading back into the OR as soon as possible. He may need to go on life support (ECMO) to get from his room back to the OR.
Please pray for wisdom and also supernatural energy for the surgeon who is no doubt tired after a long day of surgery. This could be another long surgery. We're camped out in the waiting area by the windows, watching the rain pour down. Thanks for your prayers. We know that God is in control and we're so thankful to have Jesus' peace and the comfort of the Holy Spirit. God is good.
Blessings,
Elizabeth and Graham
Please pray for wisdom and also supernatural energy for the surgeon who is no doubt tired after a long day of surgery. This could be another long surgery. We're camped out in the waiting area by the windows, watching the rain pour down. Thanks for your prayers. We know that God is in control and we're so thankful to have Jesus' peace and the comfort of the Holy Spirit. God is good.
Blessings,
Elizabeth and Graham
Post-operation Report
The surgeon just came and spoke with us and reiterated most of what we heard at the mid-way mark. Josiah was given a central shunt which connects his aorta to his pulmonary artery. The surgeon said he's not pessimistic but he is unable to predict if the surgery is going to be successful or not. Josiah's numbers at the very end of surgery were not as favourable as they had been when the resident came and spoke. However, to some extent this was expected and the next 24-48 hours will be telling.
The surgeon noted his surprise regarding the length of time it took to get Josiah's blood ready for the heart-lung machine before surgery started. This might be a severe limitation if Josiah ever needed to go on emergency life support (ECMO) so we'll pray that never happens. Today's procedure did not seem to have any effect on Josiah's inlet valve thus far (the valve was not touched during the surgery). In months or years it might have a detrimental affect. Even if today's surgery is completely successful as we are hoping and praying, there is no way to estimate when he would need his next surgery as there are so many factors involved.
We should be able to see Josiah in about half an hour. Thank you so much for your prayers for Josiah's complete recuperation and healing.
Blessings,
Elizabeth and Graham
The surgeon noted his surprise regarding the length of time it took to get Josiah's blood ready for the heart-lung machine before surgery started. This might be a severe limitation if Josiah ever needed to go on emergency life support (ECMO) so we'll pray that never happens. Today's procedure did not seem to have any effect on Josiah's inlet valve thus far (the valve was not touched during the surgery). In months or years it might have a detrimental affect. Even if today's surgery is completely successful as we are hoping and praying, there is no way to estimate when he would need his next surgery as there are so many factors involved.
We should be able to see Josiah in about half an hour. Thank you so much for your prayers for Josiah's complete recuperation and healing.
Blessings,
Elizabeth and Graham
Mid-surgery Update
We just spoke with the surgical resident (Elizabeth's former classmate). They have inserted a central shunt between the aorta and pulmonary artery. They first tried reopening the connection between the heart and pulmonary artery but they could not get the proper blood flow. However, with the shunt, Josiah's oxygen saturation levels are now in the 80s and his central venous pressures are hitting their target of 15.
The resident said it took them a while to connect the heart and lung machine because they couldn't get his blood thinned to the desired levels.
As of the time of this writing (5:00 PM), they have finished up all the procedures, but now they need to stop his bleeding and sew up his chest, which will likely take another few hours. After that, the surgeon will be able to chat with us while Josiah is returned to his room.
Over the next 24-48 hours they will need to closely monitor Josiah's blood flow to ensure it is not too high. If it is too high, they would need to band the shunt in order to restrict the amount.
So, the waiting to see Josiah is not over, but at least we are very encouraged by the progress. Thank you Jesus for gifted doctors and staff, and for helping Josiah today.
Blessings,
Graham and Elizabeth
The resident said it took them a while to connect the heart and lung machine because they couldn't get his blood thinned to the desired levels.
As of the time of this writing (5:00 PM), they have finished up all the procedures, but now they need to stop his bleeding and sew up his chest, which will likely take another few hours. After that, the surgeon will be able to chat with us while Josiah is returned to his room.
Over the next 24-48 hours they will need to closely monitor Josiah's blood flow to ensure it is not too high. If it is too high, they would need to band the shunt in order to restrict the amount.
So, the waiting to see Josiah is not over, but at least we are very encouraged by the progress. Thank you Jesus for gifted doctors and staff, and for helping Josiah today.
Blessings,
Graham and Elizabeth
Josiah is now in surgery
Josiah was able to get into surgery at 11:15 AM instead of 1:00 PM today. They are going to try to reopen the connection between the pulmonary artery and the heart (that had been shut during the last surgery). If that doesn't generate the pulmonary blood flow he needs, then they may need to reverse some or all of the previous surgery, and do the BT Shunt procedure. We are praying that things go well and that the "simpler" fix will work.
We will of course keep you posted when we know more. Thanks again for all your prayers.
Blessings,
Graham and Elizabeth
We will of course keep you posted when we know more. Thanks again for all your prayers.
Blessings,
Graham and Elizabeth
Sunday 26 August 2012
Sunday Snapshot
It was great to be back at The Church of the Resurrection this morning and to see some familiar faces. We were able to keep Isaac awake both to and from church and he happily played in the nursery which meant that we were able to attend the service. A group of women prayed for us before we left. We certainly felt cared for.
Our day nurse the last couple of days has been a wonderful nurse from Ireland. It's so nice to hear her thick accent and be reminded of all our relatives in Northern Ireland and England. It's been almost a year since we were in Northern Ireland for a holiday. We think of our extended family often and we so appreciate the prayers being prayed across the ocean.
Grandma and Grandpa came and picked up Isaac this afternoon. He loves being with them so it makes for happy goodbyes.
Our nurse found a bed sore on Josiah's head today. It's not an open sore so we're praying that it doesn't get worse. They were able to get a lot of fluid out of Josiah's chest today. This is fluid that is outside of the lungs and is due to the lymph system being nicked during the first surgery. He was put on an extra two doses of a diuretic today to try to get as much fluid out as possible before he is loaded up with fluid tomorrow.
It looks like Josiah is slated to go into surgery around 1:00 PM tomorrow. We plan to post an update after we leave him with the surgical team.
Thank you so much for your continued prayers. The surgeon will be meeting with others to discuss Josiah around 7:30 AM. We're praying that God will give them wisdom as to the procedure that Josiah needs.
Blessings,
Elizabeth and Graham
Our day nurse the last couple of days has been a wonderful nurse from Ireland. It's so nice to hear her thick accent and be reminded of all our relatives in Northern Ireland and England. It's been almost a year since we were in Northern Ireland for a holiday. We think of our extended family often and we so appreciate the prayers being prayed across the ocean.
Grandma and Grandpa came and picked up Isaac this afternoon. He loves being with them so it makes for happy goodbyes.
Our nurse found a bed sore on Josiah's head today. It's not an open sore so we're praying that it doesn't get worse. They were able to get a lot of fluid out of Josiah's chest today. This is fluid that is outside of the lungs and is due to the lymph system being nicked during the first surgery. He was put on an extra two doses of a diuretic today to try to get as much fluid out as possible before he is loaded up with fluid tomorrow.
It looks like Josiah is slated to go into surgery around 1:00 PM tomorrow. We plan to post an update after we leave him with the surgical team.
Thank you so much for your continued prayers. The surgeon will be meeting with others to discuss Josiah around 7:30 AM. We're praying that God will give them wisdom as to the procedure that Josiah needs.
Blessings,
Elizabeth and Graham
Saturday 25 August 2012
One of those days
Like a low-grade fever or a dull ache is our sadness today; it's not acute but it's just beneath the surface, taking the edge off happiness. Josiah is back on nitric oxide as of this morning. He had a profound desat and they couldn't get him back up until they hooked up his NO. The staff physician and the surgeon were in the room when this happened.
The plan is for Josiah to have surgery on Monday. The surgeon wants to discuss his case with the group of 50 on Monday morning to get more input from everyone on what procedure to do in order to get more pulmonary blood flow and thereby increase his saturation levels.
He also tested positive for chylomicrons. I believe this means that a part of his lymph system was nicked during surgery. This is quite common as the surgeons are dealing with such a small area on babies. Due to this, he needs to be on a special non-fat or low-fat milk for 6 weeks. It took me a while to realize the obvious - if all goes well I'll be pumping for at least 6 more weeks, approximately every three hours or less. This isn't a big deal when I'm by myself in the hospital but it gets a little more complicated when I'm at home trying to care for my two boys. I'm clearly hoping to be home soon. I also realize that I'm ridiculous to even concern myself about this given the current state of things. So I'll move on.
Yesterday I wrote that Josiah needed his carbon dioxide level increased in his body. The reason was explained to me like this (mistakes are mine): pH alters the way blood flows in the body. The body wants to maintain a normal pH of 7.4. Josiah has high bicarb (a base) which makes his pH high. Carbon dioxide is an acid so it wants to go high to counteract the base. As they increase the carbon dioxide inside Josiah, this decreases the pH which increases blood flow to the brain and then more blood comes back to the lungs through the superior vena cava and gets oxygenated, thus increasing his saturation levels. It's something like that anyway.
Isaac has been our elixir. I don't get a lot of joy from using a straw to drink my water but the look on Isaac's face after performing this great feat himself can't help but elicit a laugh from his parents. During Isaac's previous visit here we heard another boy at RMH say, "He's so cute. I just want to eat him up," after looking at Isaac. My sentiments exactly.
Not that he always makes us laugh. Graham and I were covered in hair after his haircut today. He sat on Graham's lap while I held his face still and the hairdresser cut. Isaac was less than impressed.
I met a woman today who is a recent immigrant. She did not know until her baby was born a few weeks ago that there were heart troubles. She lives many hours from Toronto so she's here alone with one child who is around 6 years old. Children are not allowed to visit in the CCCU so that child waits in the hallway while the mother visits the baby.
We are blessed to know God's love during this time. Thanks so much for your prayers, support, and emails.
Blessings,
Elizabeth
The plan is for Josiah to have surgery on Monday. The surgeon wants to discuss his case with the group of 50 on Monday morning to get more input from everyone on what procedure to do in order to get more pulmonary blood flow and thereby increase his saturation levels.
He also tested positive for chylomicrons. I believe this means that a part of his lymph system was nicked during surgery. This is quite common as the surgeons are dealing with such a small area on babies. Due to this, he needs to be on a special non-fat or low-fat milk for 6 weeks. It took me a while to realize the obvious - if all goes well I'll be pumping for at least 6 more weeks, approximately every three hours or less. This isn't a big deal when I'm by myself in the hospital but it gets a little more complicated when I'm at home trying to care for my two boys. I'm clearly hoping to be home soon. I also realize that I'm ridiculous to even concern myself about this given the current state of things. So I'll move on.
Yesterday I wrote that Josiah needed his carbon dioxide level increased in his body. The reason was explained to me like this (mistakes are mine): pH alters the way blood flows in the body. The body wants to maintain a normal pH of 7.4. Josiah has high bicarb (a base) which makes his pH high. Carbon dioxide is an acid so it wants to go high to counteract the base. As they increase the carbon dioxide inside Josiah, this decreases the pH which increases blood flow to the brain and then more blood comes back to the lungs through the superior vena cava and gets oxygenated, thus increasing his saturation levels. It's something like that anyway.
Isaac has been our elixir. I don't get a lot of joy from using a straw to drink my water but the look on Isaac's face after performing this great feat himself can't help but elicit a laugh from his parents. During Isaac's previous visit here we heard another boy at RMH say, "He's so cute. I just want to eat him up," after looking at Isaac. My sentiments exactly.
Not that he always makes us laugh. Graham and I were covered in hair after his haircut today. He sat on Graham's lap while I held his face still and the hairdresser cut. Isaac was less than impressed.
I met a woman today who is a recent immigrant. She did not know until her baby was born a few weeks ago that there were heart troubles. She lives many hours from Toronto so she's here alone with one child who is around 6 years old. Children are not allowed to visit in the CCCU so that child waits in the hallway while the mother visits the baby.
We are blessed to know God's love during this time. Thanks so much for your prayers, support, and emails.
Blessings,
Elizabeth
Friday 24 August 2012
Way to go Bob!
I don't use many names in these posts as I like to protect people's privacy; however, you don't know Bob. You don't know his position let alone his last name but I want you to know that Bob is awesome. I don't know Bob either but I do know that he suggested trying more dead space in Josiah's ventilator in order to increase his carbon dioxide. After making the additions to the tubing, Josiah's oxygen saturation levels shot up to the 70s.
Thanks Bob - you're great! In fact, I think you deserve a WOW bravery bead. Josiah has two WOW bravery beads that his nurses brought him for special accomplishments: getting off nitric oxide and getting off muscle relaxant. He's going to keep his special bead with three balloons even though he's back on muscle relaxant.
His sats were in the 30s this afternoon so the staff physician put him back on the muscle relaxant but his sats still wouldn't rise above the low 50s which is when Bob proposed his idea. Thanks Lord for sending Bob. It was great to see Josiah's sats in the 70s again. Actually, his NIRS reading was 79 so the doctor asked if she could take a picture of the reading. I believe a normal person's regular NIRS reading is 60 and Josiah's had been in the 30s. If all his numbers are perfect tomorrow, she might try waking him up again tomorrow. Right now when he wakes up from the muscle relaxant his sats plummet.
I just woke up from putting Isaac to sleep. I wrestled my hair from his hand so I could come and finish this. Graham just returned from the hospital and it's time for bed.
Clearly Josiah seems to be saying that he needs more surgery but we'll see what happens tomorrow. Thanks so much for your prayers and support and emails! I'm looking forward to spending some time with Isaac tomorrow. He always makes us laugh.
Blessings,
Elizabeth
Thanks Bob - you're great! In fact, I think you deserve a WOW bravery bead. Josiah has two WOW bravery beads that his nurses brought him for special accomplishments: getting off nitric oxide and getting off muscle relaxant. He's going to keep his special bead with three balloons even though he's back on muscle relaxant.
His sats were in the 30s this afternoon so the staff physician put him back on the muscle relaxant but his sats still wouldn't rise above the low 50s which is when Bob proposed his idea. Thanks Lord for sending Bob. It was great to see Josiah's sats in the 70s again. Actually, his NIRS reading was 79 so the doctor asked if she could take a picture of the reading. I believe a normal person's regular NIRS reading is 60 and Josiah's had been in the 30s. If all his numbers are perfect tomorrow, she might try waking him up again tomorrow. Right now when he wakes up from the muscle relaxant his sats plummet.
I just woke up from putting Isaac to sleep. I wrestled my hair from his hand so I could come and finish this. Graham just returned from the hospital and it's time for bed.
Clearly Josiah seems to be saying that he needs more surgery but we'll see what happens tomorrow. Thanks so much for your prayers and support and emails! I'm looking forward to spending some time with Isaac tomorrow. He always makes us laugh.
Blessings,
Elizabeth
Desats
It's 12:30 AM and I just returned from the hospital. Two security guards walked me over. I've always left the hospital before dark but just after writing my last post I went in to see Josiah and he had a desat shortly thereafter. He went as low as 38 or 39 and then was in the 40s and 50s before going up to the low 60s. Not long after, he had his next desat to the high 40s and 50s. He was in the low 50s for over an hour. When I left him he was in the high 50s.
The additional problem is that his central line isn't working correctly and his peripheral line in his foot was taken out this afternoon after it stopped working. Initially the nurse thought that both the access sites on the central line were not working but the fellow was able to push fluid into one line (but not pull any fluid out). Thus the nurse was able to give Josiah some ativan and that helped a little.
It's time to sleep. The nurse is going to call me if she needs to call the fellow tonight. Thanks for your prayers.
Blessings,
Elizabeth
The additional problem is that his central line isn't working correctly and his peripheral line in his foot was taken out this afternoon after it stopped working. Initially the nurse thought that both the access sites on the central line were not working but the fellow was able to push fluid into one line (but not pull any fluid out). Thus the nurse was able to give Josiah some ativan and that helped a little.
It's time to sleep. The nurse is going to call me if she needs to call the fellow tonight. Thanks for your prayers.
Blessings,
Elizabeth
Thursday 23 August 2012
Eyes Open!
First he started moving his feet and then after a while he opened his beautiful eyes! It was so nice to see Josiah move and to look into his eyes after more than a week of not moving. Thank You Lord! His last dose of rocuronium (muscle relaxant) was at 7:19 this morning. Most of the day his sats were in the 60s. When I last saw him he was getting 60% oxygen and his peep was down to 5 on the ventilator (it was 8 earlier this morning). He had one desat to the 50s but sedation was able to bump him back up.
The plan is to continue to try to wean him from the ventilator and the sedation. This is a test for him. If he can't tolerate it then he will need to have another surgery. You know what we're praying for. Josiah does have some fluid on his lungs. At least now he can work on coughing it up himself (he coughs and the nurses suction). They had ordered physio yesterday to help get rid of the fluid but the nurses realized that he wouldn't be able to handle the physio so that was cancelled.
Josiah was able to look into his grandparents' eyes today as well. That was their reward for waiting an hour and a half in a traffic jam. It really shouldn't take an hour and a half to get from the York exit on the Gardiner to Elm Street in downtown Toronto!
I have been meaning to write about how thankful I am to God for the timing of all of this. Before Josiah was born we had no idea how long we would be in the hospital. Many children are in hospital for a number of months after birth. Josiah was able to come home when he was just one week old. Before his birth I had wondered if I would still be at the hospital with Josiah when our B.C. relatives were here for three weeks in July. We were able to have a great time visiting with them and then they flew back on a Saturday and we were admitted to SickKids on the following Tuesday. What a blessing to be able to spend time with them while they were here.
Josiah is getting a small amount of my milk every three hours. That will probably increase as he starts to digest more now that he isn't muscle relaxed. Some people have asked about the milk process. I pump milk at the hospital or RMH. I put the milk in specimen bottles and affix a label which has Josiah's name, the date, and time. I put these in a basket and a staff person puts the bottles in the freezer. Once a day the milk is picked up and taken to a deep freeze in the basement and the nutrition department sends up the daily milk as ordered by the dietitian. Right now Josiah gets my milk through an NG tube down his nose. If I were to stop pumping then I would lose my milk supply. We have a small fridge in our room at RMH so when I pump there I just store my milk in the fridge until my next trip to the hospital.
It's time to go and look into my baby's eyes. Thanks for your prayers!
Blessings,
Elizabeth
The plan is to continue to try to wean him from the ventilator and the sedation. This is a test for him. If he can't tolerate it then he will need to have another surgery. You know what we're praying for. Josiah does have some fluid on his lungs. At least now he can work on coughing it up himself (he coughs and the nurses suction). They had ordered physio yesterday to help get rid of the fluid but the nurses realized that he wouldn't be able to handle the physio so that was cancelled.
Josiah was able to look into his grandparents' eyes today as well. That was their reward for waiting an hour and a half in a traffic jam. It really shouldn't take an hour and a half to get from the York exit on the Gardiner to Elm Street in downtown Toronto!
I have been meaning to write about how thankful I am to God for the timing of all of this. Before Josiah was born we had no idea how long we would be in the hospital. Many children are in hospital for a number of months after birth. Josiah was able to come home when he was just one week old. Before his birth I had wondered if I would still be at the hospital with Josiah when our B.C. relatives were here for three weeks in July. We were able to have a great time visiting with them and then they flew back on a Saturday and we were admitted to SickKids on the following Tuesday. What a blessing to be able to spend time with them while they were here.
Josiah is getting a small amount of my milk every three hours. That will probably increase as he starts to digest more now that he isn't muscle relaxed. Some people have asked about the milk process. I pump milk at the hospital or RMH. I put the milk in specimen bottles and affix a label which has Josiah's name, the date, and time. I put these in a basket and a staff person puts the bottles in the freezer. Once a day the milk is picked up and taken to a deep freeze in the basement and the nutrition department sends up the daily milk as ordered by the dietitian. Right now Josiah gets my milk through an NG tube down his nose. If I were to stop pumping then I would lose my milk supply. We have a small fridge in our room at RMH so when I pump there I just store my milk in the fridge until my next trip to the hospital.
It's time to go and look into my baby's eyes. Thanks for your prayers!
Blessings,
Elizabeth
Wednesday 22 August 2012
Time for bed
This will be short as it's time for bed. There's not much to report. The nurses were able to wean Josiah off the nitric oxide by about 6:30 this morning but they weren't able to wean the ventilator or let him wake up. Any time the muscle relaxant started to lift, he would desat. It was taking him around an hour and a half to recover from his desats after suctioning. The nurses call Josiah a "hands off baby" as he desats easily. They try not to touch him more than they need. He takes a lot of sedation.
Graham is heading to Kitchener in the morning. We enjoyed an amazing meal of fajitas prepared by the Blue Jays Care Foundation. They even made homemade guacamole.
I'm falling asleep while typing this so I'll say good-night. Thanks for your prayers!
Blessings,
Elizabeth
Graham is heading to Kitchener in the morning. We enjoyed an amazing meal of fajitas prepared by the Blue Jays Care Foundation. They even made homemade guacamole.
I'm falling asleep while typing this so I'll say good-night. Thanks for your prayers!
Blessings,
Elizabeth
Tuesday 21 August 2012
A small world
My undergrad class in McMaster University's Arts & Science programme had 60 students in it. I found out today that one of those students is a surgical resident at SickKids and he assisted in Josiah's surgery! That's amazing and such a gift. I haven't spoken to him yet but I'm looking forward to hearing the inside scoop on the surgery. I noticed him today during rounds but I wasn't quite sure if it was him until Google helped confirm his identity.
Graham is heading to Toronto for the night and he'll work at RMH tomorrow. It will be great to see him. Today was the hardest day thus far for me. A nap, tears, prayer, emails and the Bible helped but Graham will be a wonderful bonus.
I read some verses from Philippians 4 to another mom in the waiting room: "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." The mom told me that she'd stopped going to church for various reasons but that she'd recently started to pray again. I hope she can also experience Jesus' peace and hear him answer her prayers. I met another mom who has been in the city for eight months with her toddler who has cancer. She'll be here at least five more months. She has two other children back home.
I heard tonight that they are trying to wean Josiah off the nitric oxide completely and then they will try to wake him up tomorrow and see what happens. They'll let him prove and declare himself. I know God is also able to declare Himself tomorrow or any time. It's hard to pray, "Not my will but Thine," but I'm trying to do so. I do let Him know my desire though - "Please give me back my son and let me raise him for Your glory." If Josiah can't tolerate being awake then they'll just have to decide what surgery to do. Not surprisingly, there is some debate on the best course of action.
I believe it was Salesforce that provided a wonderful dinner tonight. Thanks for keeping us in your prayers!
Blessings,
Elizabeth
Graham is heading to Toronto for the night and he'll work at RMH tomorrow. It will be great to see him. Today was the hardest day thus far for me. A nap, tears, prayer, emails and the Bible helped but Graham will be a wonderful bonus.
I read some verses from Philippians 4 to another mom in the waiting room: "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." The mom told me that she'd stopped going to church for various reasons but that she'd recently started to pray again. I hope she can also experience Jesus' peace and hear him answer her prayers. I met another mom who has been in the city for eight months with her toddler who has cancer. She'll be here at least five more months. She has two other children back home.
I heard tonight that they are trying to wean Josiah off the nitric oxide completely and then they will try to wake him up tomorrow and see what happens. They'll let him prove and declare himself. I know God is also able to declare Himself tomorrow or any time. It's hard to pray, "Not my will but Thine," but I'm trying to do so. I do let Him know my desire though - "Please give me back my son and let me raise him for Your glory." If Josiah can't tolerate being awake then they'll just have to decide what surgery to do. Not surprisingly, there is some debate on the best course of action.
I believe it was Salesforce that provided a wonderful dinner tonight. Thanks for keeping us in your prayers!
Blessings,
Elizabeth
More surgery
The good news is that today is cookie day at RMH. The thought of those cookies actually buoyed my spirits as I walked back from the hospital after learning that Josiah needs another surgery. The cardiac catheterization went well. They were able to confirm that the only problem is the pressures. He is not able to get enough blood from his head to his lungs to get oxygenated so his sats are too low. When he arrived back from the cath lab his sats were in the 30s and it took the team an hour to get them up to 65.
There will be another meeting today or tomorrow to decide what surgery Josiah needs. It will be a shunt of some sort to get more blood to the lungs. They have said it will be very difficult to keep him balanced after the second surgery as blood will be going to the lungs from two places.
Thanks for your prayers!
Blessings,
Elizabeth
There will be another meeting today or tomorrow to decide what surgery Josiah needs. It will be a shunt of some sort to get more blood to the lungs. They have said it will be very difficult to keep him balanced after the second surgery as blood will be going to the lungs from two places.
Thanks for your prayers!
Blessings,
Elizabeth
Monday 20 August 2012
Catheterization Tuesday
Josiah is scheduled to have a cardiac catheterization tomorrow (Tuesday) at 8:00 AM. Usually this is a lower risk procedure but for Josiah there is a moderate risk of having serious repercussions due to his current state. They will be inserting a catheter in his groin to go up to his heart as well as another catheter in his neck to go down through his superior vena cava to the pulmonary artery. This may just be a diagnostic procedure but if they find narrowing of a vessel they would try to balloon or shunt it. If they find that blood is going through a vein to the heart and bypassing the lungs then they would plug the vein. The risks increase if they try to intervene. Please pray for wisdom for the doctors and that all goes well.
Josiah's saturation levels were in the 50s when I left him tonight. It was so great to see them in the 70s for a while this afternoon. I learned during rounds that an x-ray today showed that Josiah's left lung was partially collapsed. Turning him and changing some settings on the ventilator seemed to help.
There will be meals at RMH Tuesday, Wednesday and Thursday nights! Last week Bell Mobility and Cargill provided great meals. Ace Bakery also donates some bread and I believe someone donates milk. There are certainly a lot of people staying here. It's been great to get to know some of the other moms and dads. It was wonderful to see my dad tonight and have him see and pray for Josiah.
By the way, in case there is any confusion, Josiah has not had any of my milk since before his surgery. Lipids and TPN (nutrition) are being given by IV. I need to keep pumping in order to maintain my milk supply.
It's time for bed. Thanks so much for all of your prayers.
Blessings,
Elizabeth
Josiah's saturation levels were in the 50s when I left him tonight. It was so great to see them in the 70s for a while this afternoon. I learned during rounds that an x-ray today showed that Josiah's left lung was partially collapsed. Turning him and changing some settings on the ventilator seemed to help.
There will be meals at RMH Tuesday, Wednesday and Thursday nights! Last week Bell Mobility and Cargill provided great meals. Ace Bakery also donates some bread and I believe someone donates milk. There are certainly a lot of people staying here. It's been great to get to know some of the other moms and dads. It was wonderful to see my dad tonight and have him see and pray for Josiah.
By the way, in case there is any confusion, Josiah has not had any of my milk since before his surgery. Lipids and TPN (nutrition) are being given by IV. I need to keep pumping in order to maintain my milk supply.
It's time for bed. Thanks so much for all of your prayers.
Blessings,
Elizabeth
Cardiac Catheterization Soon?
They wanted to do another cardiac catheterization today but the cath lab is booked up so he'll probably have one tomorrow. The fellow and nurse have kindly answered my numerous questions so I'll try to explain what they told me. Josiah's saturation levels are too low. This is either because the blood coming from the lungs is not saturated enough or the blood in the body is overly used up. They've dealt with the question of the blood in the body as they gave Josiah more blood and optimized his haemoglobin, his cardiac output is good and he's not septic. Thus, the issue is in the lungs.
The echocardiograms have shown that all of the connections are fine so that's not the problem. He could have a collapsed lung, pneumonia, or fluid in the lungs but this is highly unlikely and not expected as there are no other signs of this and they are suctioning him when needed and the fluid looks fine. They think that the pressures in the lungs are just too high so a cardiac catheterization will tell them what the pressures are. As previously explained, the surgery Josiah had rerouted the blood from his upper body so that it goes directly to the lungs. There are small veins that still go to the heart so one possibility is that one of these veins has become bigger and thus a portion of his blood is going to the heart and bypassing the lungs, thereby not getting oxygenated. A cath would show this and if it were happening they could just cut the vein so that all of the blood goes to the lungs.
If the only problem they find is that the pressures are too high, then there is a decision to make. They could either just wait until the pressures come down or they could do another surgery to create the BT Shunt that connects the aorta to the pulmonary artery and hence more blood would be oxygenated. However, it would then be extremely difficult to keep him balanced as blood would be going to the lungs from two different shunts.
It was great to see my pastor and his wife this morning. They each came and prayed for Josiah. Josiah's saturation levels were either in the 50s or 60s when they saw him. When I returned to the room after saying good-bye and then pumping, his saturation levels were in the 70s. The nurse said that something in his blood work had not been good so they changed some of the ventilator settings and his sats increased. I'm going to get more information from the respiratory therapist later. When I left him to go and have my lunch, his sats were mid to high 70s. It felt so great to see a good number after all these days. Thank You Jesus!
A number of people have asked if the days seem long. They don't. Pumping 7-8 times a day really breaks things up as does eating and going back and forth to RMH and keeping you informed.
I heard that Isaac slept well and is having fun with his cousins. He made us laugh so much on the weekend. He's living up to his name. Thanks so much for all your prayers for our family.
Blessings,
Elizabeth
The echocardiograms have shown that all of the connections are fine so that's not the problem. He could have a collapsed lung, pneumonia, or fluid in the lungs but this is highly unlikely and not expected as there are no other signs of this and they are suctioning him when needed and the fluid looks fine. They think that the pressures in the lungs are just too high so a cardiac catheterization will tell them what the pressures are. As previously explained, the surgery Josiah had rerouted the blood from his upper body so that it goes directly to the lungs. There are small veins that still go to the heart so one possibility is that one of these veins has become bigger and thus a portion of his blood is going to the heart and bypassing the lungs, thereby not getting oxygenated. A cath would show this and if it were happening they could just cut the vein so that all of the blood goes to the lungs.
If the only problem they find is that the pressures are too high, then there is a decision to make. They could either just wait until the pressures come down or they could do another surgery to create the BT Shunt that connects the aorta to the pulmonary artery and hence more blood would be oxygenated. However, it would then be extremely difficult to keep him balanced as blood would be going to the lungs from two different shunts.
It was great to see my pastor and his wife this morning. They each came and prayed for Josiah. Josiah's saturation levels were either in the 50s or 60s when they saw him. When I returned to the room after saying good-bye and then pumping, his saturation levels were in the 70s. The nurse said that something in his blood work had not been good so they changed some of the ventilator settings and his sats increased. I'm going to get more information from the respiratory therapist later. When I left him to go and have my lunch, his sats were mid to high 70s. It felt so great to see a good number after all these days. Thank You Jesus!
A number of people have asked if the days seem long. They don't. Pumping 7-8 times a day really breaks things up as does eating and going back and forth to RMH and keeping you informed.
I heard that Isaac slept well and is having fun with his cousins. He made us laugh so much on the weekend. He's living up to his name. Thanks so much for all your prayers for our family.
Blessings,
Elizabeth
Sunday 19 August 2012
Bath Day
Josiah's day nurse gave him a full bath today and changed his dressings while we were at church. It was nice to see him clean and much less puffy. The lasix was doing its job; Josiah was peeing ten times his normal volume.
He's hasn't changed much the last two days. He's been kept heavily sedated and muscle relaxed. He hasn't had the profound desats like Thursday and Friday. The nurses said he would be up for discussion tomorrow. They thought that the doctors might want him to go for another cardiac catheterization so that they can measure the pressures and get a better idea of what's going on. It would be nice if his saturation levels would improve so that he wouldn't need to have this procedure.
It was wonderful to have Isaac with us this weekend. Graham and Isaac left for Kitchener around 7:00 tonight. Isaac is staying with his aunt, uncle, and cousins for a few days. He wasn't quite sure what to think of Ronald McDonald when he showed up at RMH but he definitely wanted to watch him without getting too close. There are a number of other children here that are close to Isaac's age so it's nice to see him play with his new friends.
That's all the news for now. I would love to see Josiah's eyes open. Thanks for keeping us in your prayers.
Blessings,
Elizabeth
He's hasn't changed much the last two days. He's been kept heavily sedated and muscle relaxed. He hasn't had the profound desats like Thursday and Friday. The nurses said he would be up for discussion tomorrow. They thought that the doctors might want him to go for another cardiac catheterization so that they can measure the pressures and get a better idea of what's going on. It would be nice if his saturation levels would improve so that he wouldn't need to have this procedure.
It was wonderful to have Isaac with us this weekend. Graham and Isaac left for Kitchener around 7:00 tonight. Isaac is staying with his aunt, uncle, and cousins for a few days. He wasn't quite sure what to think of Ronald McDonald when he showed up at RMH but he definitely wanted to watch him without getting too close. There are a number of other children here that are close to Isaac's age so it's nice to see him play with his new friends.
That's all the news for now. I would love to see Josiah's eyes open. Thanks for keeping us in your prayers.
Blessings,
Elizabeth
Saturday 18 August 2012
Profound Desats
Yesterday I wrote that Josiah's sats (saturation levels) were at 51 when I walked in his room and a team of people were working on him. I didn't think to ask how low they had gone. During rounds, I heard the nurse say that the most significant problem was Josiah's "profound desats" and she said that he'd gone down to 29 and they had a hard time getting him back up. I recall the staff physician saying after his surgery that she would tolerate him in the 60s but not lower.
Apart from the desat episodes his sats were mainly in the 70s yesterday. By the time I came back in the evening his heart rate was no longer tachycardic as it had been for much of the day. Either a change in his meds and/or cooling off his body may have helped. He is one puffy boy due to all the fluids that have been given to him.
My mom and sister-in-law came to visit yesterday evening. They both stayed with Josiah and sang songs to him while I pumped. It was great to see them. I spoke with Josiah's nurse this morning and she said he had a relatively stable night with tweaking here and there.
I'm looking forward to seeing Graham and Isaac in a few hours. Thanks so much for your prayers!
Blessings,
Elizabeth
Apart from the desat episodes his sats were mainly in the 70s yesterday. By the time I came back in the evening his heart rate was no longer tachycardic as it had been for much of the day. Either a change in his meds and/or cooling off his body may have helped. He is one puffy boy due to all the fluids that have been given to him.
My mom and sister-in-law came to visit yesterday evening. They both stayed with Josiah and sang songs to him while I pumped. It was great to see them. I spoke with Josiah's nurse this morning and she said he had a relatively stable night with tweaking here and there.
I'm looking forward to seeing Graham and Isaac in a few hours. Thanks so much for your prayers!
Blessings,
Elizabeth
Friday 17 August 2012
Keeping him cool
When we left Josiah last night his sats were in the 60s. After we left they gave him muscle relaxant and they shot up to the 70s. They tried to wake him a couple of times in the night (just by not giving him muscle relaxant) but he didn't tolerate it (i.e. his sats were too low, etc.).
When I arrived this morning there were a lot of people around his bed. I saw that his sats were 51. Apparently they had just dropped. They were able to give him more muscle relaxant and other drugs and his sats rose to the 60s and 70s. He was trying to do some breathing on his own so they changed some settings on the ventilator as they want the ventilator to do all the work in order to decrease the work of his heart. Right now all of his numbers look good except for his heart rate which is high. They are putting something under him to cool his body down to try to decrease his heart rate. They want to keep his temperature in the 36s. He'll be kept muscle relaxed for the weekend so I may not see him awake for a while.
I asked the nurse if all of these issues can be attributed to the fact that the pressures in his lungs were so high before the surgery. She said that most of it can. Josiah has been used to having tons of pressure in his lungs so he now needs to get used to the new pressures. She likened it to how someone would feel when doing a 10km run and being very stiff and tight from all the lactic acid build up - it would take some time to loosen up.
One of our previous posts was a little confusing. The surgeon did not attempt to fix the issue with Josiah's main heart valve but the results of this surgery should ease the load on this valve.
Thanks so much for all your prayers and support.
Blessings,
Elizabeth
Thursday 16 August 2012
Ongoing Tweaking
After saying good-night to Josiah, Graham dropped me off at RMH and then headed home to Kitchener. He'll bring Isaac here on Saturday and we'll be together until Sunday afternoon. The next few days there will be a lot of tweaking of Josiah's medications based on his numbers. We were told he opened his eyes once briefly today.
We had two great visitors today. We are so blessed with wonderful friends and family. Thanks for your prayers!
Blessings,
Elizabeth
We had two great visitors today. We are so blessed with wonderful friends and family. Thanks for your prayers!
Blessings,
Elizabeth
Balancing Act
We just spoke with Josiah's cardiologist who told us that everything on the echocardiogram looked good; his connections are fine and there are no blockages. However, the resistance in his lungs remains high so they keep tweaking all of his medications to try to increase his oxygen saturation levels and reduce the pressure in the veins in his upper body. They expect that they will be performing this balancing act for the next few days as his body adjusts to his new rerouted blood flow to the lungs.
Thanks for standing with us in prayer.
Blessings,
Graham and Elizabeth
Thanks for standing with us in prayer.
Blessings,
Graham and Elizabeth
Prayers Requested
There is concern because Josiah's CVP number is high. They are going to do an echocardiogram to see what's going on. Depending on what is found, they may need to reoperate. We'll send an update when we can. Thanks!
Blessings,
Elizabeth
Blessings,
Elizabeth
Quick Update
I just called the nurse, and Josiah's oxygen level is sitting around 80 and his blood work is the best it has been all night. His potassium was a little high so they gave him some lasix so he would pee some of it out of his system. What great news!
Blessings,
Graham
Blessings,
Graham
Wednesday 15 August 2012
Cute as ever
We just saw Josiah and he is as cute as ever, although a little more puffy. He will be muscle relaxed and deeply sedated all through the night. His oxygen saturation levels are in the 60s, so they are monitoring them very closely, and they will need to intervene if they go down much lower. The staff physician doesn't think she'll be getting much sleep tonight.
However, they suggested that tonight would be the best time for us to sleep, so we are heading back to Ronald McDonald House. If tonight goes well for Josiah, they will begin to wake him up tomorrow.
Thanks again and keep up the prayers for a great recovery.
Blessings,
Graham and Elizabeth
However, they suggested that tonight would be the best time for us to sleep, so we are heading back to Ronald McDonald House. If tonight goes well for Josiah, they will begin to wake him up tomorrow.
Thanks again and keep up the prayers for a great recovery.
Blessings,
Graham and Elizabeth
Good News!
We just spoke with the surgeon, and he said that things went well and that Josiah is now heading to the CCCU for recovery! The surgery took about seven hours. They were able to accomplish all that they set out to do (the Glenn and fixing the pulmonary veins), and there were no major surprises once they opened Josiah and had a look. The one area of concern the surgeon did have was Josiah's oxygen levels. They gave him nitric oxide to help decrease the resistance in his lungs, and this seemed to work. The CCCU staff will have to be extra careful in monitoring it over the next few days of recovery. They will continue to watch the leakage in the AV valve. The surgeon completely closed the connection between the heart and the pulmonary artery.
We forgot to mention this morning that there was the slight possibility that Josiah's chest would be left somewhat open for post-surgery recovery, until the heart returned to its normal size. However, that was not required; the surgeon has him nicely put back together. Elizabeth was hoping to get a picture of his heart beating, but alas that's not to be. =)
We are heading for some celebratory ice cream before heading back here to see our little guy. We are not able to see him for at least another hour, so a walk outside will be a welcome change.
Thanks again for all the prayers -- God is working! Thank you God for helping the doctors, nurses and Josiah.
Blessings,
Graham and Elizabeth
We forgot to mention this morning that there was the slight possibility that Josiah's chest would be left somewhat open for post-surgery recovery, until the heart returned to its normal size. However, that was not required; the surgeon has him nicely put back together. Elizabeth was hoping to get a picture of his heart beating, but alas that's not to be. =)
We are heading for some celebratory ice cream before heading back here to see our little guy. We are not able to see him for at least another hour, so a walk outside will be a welcome change.
Thanks again for all the prayers -- God is working! Thank you God for helping the doctors, nurses and Josiah.
Blessings,
Graham and Elizabeth
The Waiting (Room) Game
Josiah’s open-heart surgery started around 1:00 PM. We met with the surgeon this
morning. He explained that there
has been lots of debate regarding which procedures Josiah needs, as his anatomy
is so complex. The meetings in
which Josiah and the other heart cases are discussed have around 50 people,
including cardiologists, surgeons, fellows, etc. We learned there are 22 cardiologists at SickKids.
They have decided to attempt the Bilateral Bidirectional
Cavopulmonary Shunt (formerly called the Glenn) in addition to fixing the
pulmonary veins. If they do these
procedures and the pressure is still too high, they may need to reverse the Glenn
and perform a BT Shunt instead. If
the Glenn works, Josiah will need one less surgery. The Glenn procedure will result in his two superior vena
cava being attached to his pulmonary arteries so that blood from his upper body
will flow passively to his lungs without going through the heart first.
Because Josiah is only four months old, they expect that the
resistance in the lungs will be high and thus he will have swelling and his
eyelids will be puffy after the operation. They will use medications to control the resistance in his
lungs and this usually calms down after a few days. The procedures today will also better protect his main valve
from leakage because the heart won’t have to work as hard going forward.
The surgeon wouldn’t give us an estimated time for
completing the surgery but the anesthetist estimated about 4-8 hours. Apparently no news is good news and we
are not to watch the clock. The
surgeon said the surgery is neither low risk nor high risk but somewhere in
between. There will be two
surgeons, two anesthetists, two nurses, and two people working the heart-lung
machine during the surgery.
We have camped out in the waiting area on the second floor
near the windows, as they want at least one parent available at all times. It’s a beautiful day outside with lots
of sunlight coming in.
A family that has gone through similar circumstances with
their son came by to see us this morning, as it just happened to be their son’s
annual heart checkup. Another of
God’s perfectly timed blessings.
It is always great to be able to chat with others who have experienced
the roller coaster too.
We’ll try to post again post-surgery once we know a bit
more. Once the surgeon finishes
and can speak with us, it will be at least another hour before we can go and
see Josiah.
A few friends have recommended Matt Redman's "Never Once" song to us. It seems especially appropriate as it
even talks about the coming scars.
We took one last scar-free photo of Josiah before his surgery. His eyes were open as we kissed him
good-bye. He gave us another smile
this morning.
Thanks again for all the prayers and encouraging words these
last months.
Blessings,
Elizabeth and Graham
Tuesday 14 August 2012
A smile
Well, Josiah is scheduled for surgery tomorrow (Wednesday) at 12:00. We'll meet with the surgeon sometime in the morning and sign consent forms.
My friend (a pastor's wife) came to see Josiah this morning. She anointed him with oil and prayed for him.
One of our weekend nurses suggested that we hold Josiah before the surgery. We went in this evening and we were both able to hold him. I asked if they had a pillow we could use so that he would be more comfortable. The RT said that pillows were hard to come by but she would get some blankets. She went to the linen closet and there was a pillow waiting for her. She said that never happens. Another gift. We were told that Josiah would be completely sedated before we held him to try to prevent another tet spell. We watched the nurse give him his sedative but he was awake the whole time we held him. Another gift.
It's time for sleep. Thanks so much for keeping us all in your prayers.
Blessings,
Elizabeth
Four Months Old!
We were praying that Josiah would make it to four months before needing surgery and he has. He had a pretty good day with only one episode. It sounds like he'll probably have surgery on Wednesday. They've decided to do the BT Shunt and the Coles procedures. Josiah's blood sugar levels have been low so they called in an endocrinologist today and have also increased the amount of feeds. They are doing some tests to try to determine what's happening.
We had a lovely surprise visit with friends from Stouffville this evening. We are so blessed.
Blessings,
Elizabeth and Graham
We had a lovely surprise visit with friends from Stouffville this evening. We are so blessed.
Blessings,
Elizabeth and Graham
Monday 13 August 2012
As clear as mud
When I arrived at the hospital this morning, the nurse told me that Josiah was booked for surgery tomorrow. However, the nurse has already been told that he probably won't go for surgery tomorrow. The fellow told me that there was a big debate in the meeting this morning about what needs to be done. They know they need to fix the veins because there is high back pressure so they can't just fix the lung issue without fixing the veins. The pulmonary veins collect behind the left-sided right atrium (he has two right atrium) before they go through the liver and back to the heart so these veins will be connected directly to the atrium in the Coles procedure. One out of one hundred babies born have a congenital heart defect but only one percent of those have TAPVD (Total Anomalous Pulmonary Venous Drainage). The debate is whether or not to do the BT Shunt or the Glenn. The former option would mean that the blood is being driven to the lungs by the ventricles whereas having the Glenn procedure would mean that the blood flows passively to the lungs. Two cardiac surgeons are looking at the data available but there's not much data on kids with Josiah's complex heart. We do know that they want to do surgery this week.
Josiah had a good night and he's had a good day so far. I'm not sure when his last episode was but they seem to be less frequent. Hopefully we'll know more by the end of the day. Graham is working from RMH. I just called him to tell him the update. The fellow said that the surgeons may want to meet with us later today but that will probably only happen if they make the decision. We had a good sleep last night and we're feeling good. We were able to Facetime Isaac this morning when he was eating his breakfast. It was great to get the kisses he blew us to start the day.
Thanks for all your prayers, support, and emails. We're asking God to give the surgeons wisdom regarding the best surgery for Josiah.
Blessings,
Elizabeth
Josiah had a good night and he's had a good day so far. I'm not sure when his last episode was but they seem to be less frequent. Hopefully we'll know more by the end of the day. Graham is working from RMH. I just called him to tell him the update. The fellow said that the surgeons may want to meet with us later today but that will probably only happen if they make the decision. We had a good sleep last night and we're feeling good. We were able to Facetime Isaac this morning when he was eating his breakfast. It was great to get the kisses he blew us to start the day.
Thanks for all your prayers, support, and emails. We're asking God to give the surgeons wisdom regarding the best surgery for Josiah.
Blessings,
Elizabeth
Sunday 12 August 2012
Sunday Summary
 |
| Daddy, Mommy, and their little fighter |
Josiah has been relatively stable for the last 24 hours though he has still needed sedatives and has had episodes. We've had the same wonderful nurse for two days in a row and we've had her previously so she knows Josiah well. Josiah has had lots of very loose stools so they sent a sample to the lab and we should hear if they find anything tomorrow. In addition to needing lots of diaper changes today, he also had a bath that he enjoyed.
After having breakfast at RMH we went to SickKids to pump and see Josiah. We stayed for rounds and heard the fellow say that surgery would probably be this week. We then went to church at St. Paul's on Bloor. It was great to be in a service again although it was also hard to not get emotional. That's my way of saying that I was a basket case as I was getting my bread to celebrate communion. We were singing about Jesus being broken for us and I was also thinking about how Josiah is broken. There's something about worshiping God in a corporate setting that can open the floodgates, especially when I'm experiencing lack of sleep. We definitely needed to have a nap today and were able to have one after lunch.
 |
| Visits from Isaac are always a highlight |
The Bravery Bead Program is another project of the Women's Auxiliary. Josiah received a coloured cord and beads to spell his name as well as a SickKids bead. Each time Josiah is in the hospital he receives a different bead for each procedure or event. Another "heart mom" whose son is four years old said that it's a great way to help your child process what he's gone through. Her son has over 15 feet of beads! The nurse thought the beads might also help Isaac to understand what's happening to his brother. Yesterday I played "Patticake" with Isaac. When I asked him who we should make a cake for, he immediately said, "Baby." As you may have guessed, that's his name for Josiah.
Grandma and Grandpa Faulkner came to visit today. Josiah enjoyed having visitors. We're hoping to be able to find out a surgery date tomorrow. We'll let you know what we hear.
Thanks so much for your prayers, support, and emails! We love hearing from you.
Blessings,
Elizabeth and Graham
Saturday 11 August 2012
More Episodes
Josiah had a number of his episodes today. Sometimes the nurse was able to get him out of it just with breathing support but other times he needed to be given a sedative or muscle relaxant. The episodes are certainly more frequent. We're looking forward to hearing what the plan will be on Monday morning. It's certainly looking like we're heading toward surgery soon. Often Josiah looks so sad when he's awake. We miss he amazing smiles.
The highlight of our day was seeing Isaac. Apparently he woke up happy this morning and then went and kissed a photo of Mommy and Daddy. Elizabeth's parents brought him to SickKids this afternoon for a visit. It was wonderful to spend time with them. Isaac always makes us laugh.
Thanks so much for your support and prayers.
Blessings,
Elizabeth and Graham
P.S. The Richmond Hill Christian Community Church blessed those staying at RMH with a wonderful meal on Thursday. We've enjoyed eating the leftovers.
The highlight of our day was seeing Isaac. Apparently he woke up happy this morning and then went and kissed a photo of Mommy and Daddy. Elizabeth's parents brought him to SickKids this afternoon for a visit. It was wonderful to spend time with them. Isaac always makes us laugh.
Thanks so much for your support and prayers.
Blessings,
Elizabeth and Graham
P.S. The Richmond Hill Christian Community Church blessed those staying at RMH with a wonderful meal on Thursday. We've enjoyed eating the leftovers.
Doctor's Report
It was quite a frustrating day yesterday but we felt better before we left Josiah last night. We were able to speak with his doctor and she gave us the full report. Yesterday morning at rounds the surgeon suggested that maybe Josiah was too dry so they stopped his lasix (diuretic) and gave him more blood to optimize his haemoglobin and they increased his other heart medication. The plan was to try to stop the episodes medically (as opposed to surgically) and thus we would be able to hold off on surgery as long as possible. During the meeting in which Josiah was discussed, all of the doctors felt that trying to do the Glenn procedure now would be too risky. The decision was to do the BT Shunt and correct the vein issue (with the Coles procedure) when Josiah needs surgery. Over the weekend they would try to stop the episodes and then extubate him after at least 24 hours without an episode.
Josiah had a great morning yesterday but he ended up having two episodes in the afternoon. There was a little less drama as there wasn't a whole team surrounding his bed but the nurse had to sedate him and keep bagging him (i.e. manually help him breath) for a long time until his saturation levels came up. Both of these times it seemed that he would be upset about something (diaper change, heel pricks, suctioning, etc.) and then he wouldn't be able to get out of it himself.
I just spoke with the nurse from last night and she said he had another episode overnight. This time he was fully asleep and his saturation levels just plummeted. It took them 20 minutes to get him out of it and they needed to give him a muscle relaxant. The nurse thought that extubation wouldn't even be an option now that that happened. If he can't be extubated, the staff physician will go into the huddle Monday morning and just say that he's tube dependent and that will force the hand of the surgeons and his surgery will be scheduled (next week or the week after). They don't want him on the tube too long, and as of today, it will be a week of continuously being on the tube.
The nurse was explaining that just by being in the CCCU he has a much greater risk of infection because he's on the tube and he has central lines, etc. As the doctor said yesterday, "bugs love plastic".
Thanks so much for your prayers. We really appreciate all the emails we've received - they mean a lot.
Blessings,
Elizabeth and Graham
Josiah had a great morning yesterday but he ended up having two episodes in the afternoon. There was a little less drama as there wasn't a whole team surrounding his bed but the nurse had to sedate him and keep bagging him (i.e. manually help him breath) for a long time until his saturation levels came up. Both of these times it seemed that he would be upset about something (diaper change, heel pricks, suctioning, etc.) and then he wouldn't be able to get out of it himself.
I just spoke with the nurse from last night and she said he had another episode overnight. This time he was fully asleep and his saturation levels just plummeted. It took them 20 minutes to get him out of it and they needed to give him a muscle relaxant. The nurse thought that extubation wouldn't even be an option now that that happened. If he can't be extubated, the staff physician will go into the huddle Monday morning and just say that he's tube dependent and that will force the hand of the surgeons and his surgery will be scheduled (next week or the week after). They don't want him on the tube too long, and as of today, it will be a week of continuously being on the tube.
The nurse was explaining that just by being in the CCCU he has a much greater risk of infection because he's on the tube and he has central lines, etc. As the doctor said yesterday, "bugs love plastic".
Thanks so much for your prayers. We really appreciate all the emails we've received - they mean a lot.
Blessings,
Elizabeth and Graham
Friday 10 August 2012
Hurry Up and Wait
The doctors have decided to postpone surgery and instead continue to monitor Josiah's progress over the weekend. They have upped the medication that they hope will control the muscle spasms that have caused his recent episodes. We are hoping to talk with the doctor(s) this afternoon to get further information.
So, at this point, there is no scheduled surgery for today, and potentially not even for Monday. We'll continue to post updates over the weekend as we know more.
Thanks for your prayers.
Blessings,
Graham and Elizabeth
So, at this point, there is no scheduled surgery for today, and potentially not even for Monday. We'll continue to post updates over the weekend as we know more.
Thanks for your prayers.
Blessings,
Graham and Elizabeth
Thursday 9 August 2012
Roller Coaster
The catheterization went well without any complications. I left Josiah around 12:00 and he was back in his room around 2:00. I haven't had all the results explained to me but I understand that certain pressures were found to be very high and I think that's the reason that he can't have the Glen surgery right now.
One of my wonderful aunts came to visit me. We were in with Josiah when he had another episode in which his oxygen saturation levels dropped very low and the medical staff surrounded his bed to get him back on track. He was sedated and then his levels were able to come back up to his normal range. Due to this, it sounds like he may have heart surgery (the BT Shunt) either tomorrow or Monday. This is a temporary fix to get more blood to the lungs. The doctors will have another huddle tomorrow morning at 8:30 to make a decision. The charge nurse said I should be there around 8:00 AM. Josiah will be prepped for surgery in case he goes in tomorrow. After the drama my aunt treated me to Starbucks and we thought it was reasonable to eat some chocolate.
Graham will come to Ronald McDonald House tonight after he puts Isaac to bed at his grandparents' home. If Josiah doesn't have surgery tomorrow then Graham will work from here.
Josiah was quite agitated this morning before his procedure. He obviously doesn't understand what's happening and he's hungry and wants his tube out, etc. It seemed like I was constantly trying to soothe him and stop him from crying. He cries but he can't make any noise because he's intubated. It might be a long weekend if he doesn't have the surgery tomorrow. On the other hand, it might seem like an eternity waiting to see the surgeons after surgery.
I'm heading downstairs to find out what's on the menu for dinner. Another group has come to make us food. On Tuesday, Maple Leaf Sports and Entertainment blessed us with tacos, quesadillas, nachos, salads, raw veggies, and ice cream. It was delicious.
Thank you for your prayers. We'll keep you updated about the surgery.
Blessings,
Elizabeth
One of my wonderful aunts came to visit me. We were in with Josiah when he had another episode in which his oxygen saturation levels dropped very low and the medical staff surrounded his bed to get him back on track. He was sedated and then his levels were able to come back up to his normal range. Due to this, it sounds like he may have heart surgery (the BT Shunt) either tomorrow or Monday. This is a temporary fix to get more blood to the lungs. The doctors will have another huddle tomorrow morning at 8:30 to make a decision. The charge nurse said I should be there around 8:00 AM. Josiah will be prepped for surgery in case he goes in tomorrow. After the drama my aunt treated me to Starbucks and we thought it was reasonable to eat some chocolate.
Graham will come to Ronald McDonald House tonight after he puts Isaac to bed at his grandparents' home. If Josiah doesn't have surgery tomorrow then Graham will work from here.
Josiah was quite agitated this morning before his procedure. He obviously doesn't understand what's happening and he's hungry and wants his tube out, etc. It seemed like I was constantly trying to soothe him and stop him from crying. He cries but he can't make any noise because he's intubated. It might be a long weekend if he doesn't have the surgery tomorrow. On the other hand, it might seem like an eternity waiting to see the surgeons after surgery.
I'm heading downstairs to find out what's on the menu for dinner. Another group has come to make us food. On Tuesday, Maple Leaf Sports and Entertainment blessed us with tacos, quesadillas, nachos, salads, raw veggies, and ice cream. It was delicious.
Thank you for your prayers. We'll keep you updated about the surgery.
Blessings,
Elizabeth
Wednesday 8 August 2012
Catheterization Tomorrow
Josiah is scheduled to have his cardiac catheterization tomorrow morning. He wasn't able to get in today. He's number two on the list but I'll need to be at the hospital around 8:00 AM in case the first patient is cancelled. In addition to the potential for having a stroke, there are various other risks that the doctor reviewed before I signed the consent form. Thank you for your prayers regarding this procedure. It's so amazing to me that they can actually put a catheter into his atrium and then through his main valve and even up to his pulmonary artery! Incredible! The main thing they will be doing is measuring pressures at different places in the heart.
Okay, it's time for lunch. Josiah has been pretty good this morning although a little grumpy at times as he didn't feed between 3:30 AM and 12:00 PM. He gets that from his mother.
Blessings,
Elizabeth
Okay, it's time for lunch. Josiah has been pretty good this morning although a little grumpy at times as he didn't feed between 3:30 AM and 12:00 PM. He gets that from his mother.
Blessings,
Elizabeth
Last night
The four Faulkners were all sleeping in separate locations last night but it sounds like we all had a good sleep. Graham was able to visit with Isaac this morning before work. Josiah slept between diaper changes and suctioning. His last feed was at 3:30 AM. They need to stop feeds before a cardiac catheterization. They won't know until this afternoon if he's able to have the procedure today. If not, he'll have it tomorrow. Have a great day!
Blessings,
Elizabeth
Blessings,
Elizabeth
Tuesday 7 August 2012
Muscle Spasm
Yesterday evening we had a lovely visit with our pastor and his wife. They were able to see and pray for Josiah. They prayed that there would be consensus in the meeting this morning, and that's what happened. After the meeting one of the fellows came to update us. She said that the best explanation for what's been happening is that the muscle bundle right beneath the pulmonary artery spasms and causes a dynamic obstruction which suddenly decreases blood flow to the lungs and thus decreases oxygen to the body. During the spasm Josiah struggles to get oxygen through his body but his struggle ends when he's given muscle relaxant right before he is intubated as the muscle relaxant stops the spasm. This also explains why they couldn't find any changes on the echocardiogram.
They have started Josiah on medication that should keep these muscles from having a spasm. Hopefully this will fix the problem and allow them to put off the surgery for now and let Josiah grow more. Josiah is going to have a cardiac catheterization either tomorrow or Thursday and he'll remain intubated until that procedure is over. A catheter will be inserted at his groin and will go up to his heart. They will collect various data that will help them in future surgeries. There is a very rare chance of having a stroke during this procedure so please pray that Josiah will not have any negative repercussions from this procedure.
Josiah had a good night last night and he's doing well today. He hasn't been sedated today and he is much calmer. He wakes up and is content to look around. We thank the Lord that he's experiencing some peace.
Isaac is having a wonderful time with his uncle, aunt, and cousins. Graham wanted to be with me when we heard the plan so he's been working from Ronald McDonald House and will head back to Kitchener this evening. God bless the wonderful seniors who came and baked cookies at the House today! The chocolate chip cookies were especially amazing!
My Bible opened to Proverbs 31 today and I was reminded that the woman in that chapter does not fear the future. God has abundantly supplied our daily bread. His grace is sufficient and his peace truly is beyond understanding. It's not that I'm having an extra feeling of peace, it's more like I'm not in a storm and I'm not experiencing worry and anxiety (except a little when I heard the words blood clot!) :) I don't understand the peace but I'm so thankful for it.
Thank you for your prayers and support as we go through this time!
Blessings,
Elizabeth and Graham
They have started Josiah on medication that should keep these muscles from having a spasm. Hopefully this will fix the problem and allow them to put off the surgery for now and let Josiah grow more. Josiah is going to have a cardiac catheterization either tomorrow or Thursday and he'll remain intubated until that procedure is over. A catheter will be inserted at his groin and will go up to his heart. They will collect various data that will help them in future surgeries. There is a very rare chance of having a stroke during this procedure so please pray that Josiah will not have any negative repercussions from this procedure.
Josiah had a good night last night and he's doing well today. He hasn't been sedated today and he is much calmer. He wakes up and is content to look around. We thank the Lord that he's experiencing some peace.
Isaac is having a wonderful time with his uncle, aunt, and cousins. Graham wanted to be with me when we heard the plan so he's been working from Ronald McDonald House and will head back to Kitchener this evening. God bless the wonderful seniors who came and baked cookies at the House today! The chocolate chip cookies were especially amazing!
My Bible opened to Proverbs 31 today and I was reminded that the woman in that chapter does not fear the future. God has abundantly supplied our daily bread. His grace is sufficient and his peace truly is beyond understanding. It's not that I'm having an extra feeling of peace, it's more like I'm not in a storm and I'm not experiencing worry and anxiety (except a little when I heard the words blood clot!) :) I don't understand the peace but I'm so thankful for it.
Thank you for your prayers and support as we go through this time!
Blessings,
Elizabeth and Graham
Monday 6 August 2012
Our Red-headed Thrasher
Note: the first part of this post was written mid-afternoon. Skip to the end if you want the update.
----------------------
Our nurse said she saw a tinge of red in Josiah's hair. Apparently red heads are harder to sedate. They've been amazed at the amount of sedative they've had to give him in order to keep him from thrashing around. We're glad he's a fighter.
It was just confirmed that Josiah has a blood clot in his right groin at the site of his central line. We're waiting in the atrium while the doctor and nurses try to give him another line in his right chest. Normally they would put a line right into his superior vena cava at his neck but they don't want to do that with Josiah as he has two superior vena cava which are narrower and thus having a line there would have the potential to compromise a future surgery. If they can't get this line in on the first try then they'll wait until tomorrow to put a PICC line (peripherally inserted central catheter) in him. This would go from his right arm all the way to where the superior vena cava enters the atrium. This type of line lasts longer and there is less chance of an infection. An ultrasound confirmed the blood clot but also confirmed that there is no bleeding in the brain.
What led up to this was the nurse noticed that Josiah's legs were cold and purple this morning so they gave him some heat packs. Then his right leg became swollen and gave all the clinical signs of a blood clot. They did a preliminary ultrasound to ensure that the clot wasn't in his chest and that was clear. Clots are quite common with a central line in the groin. The body is recognizing a foreign object (the line) and the blood clots around the object to attack it. There is still a risk of developing another clot wherever his new line is placed but the risk will be lower as he will be on heparin which helps stop new clots. The body will dissolve the original clot over time. This can take a few weeks to a few months during which time he'll get two injections a day.
Some of his numbers were also off this morning. His sugars were low again and they are not sure why but that number has come back up again. Also his mixed venous number was significantly down. This number shows how well the body and heart are working. He now has a large patch on his head that is a fancy saturation probe collecting information continuously. This data should correlate to his blood work that's done every few hours. His lactate is also trending up. This is a sign that the body is stressed. Thus, they are trying to keep Josiah completely sedated so that his body has to work as little as possible. They want to take the stress off his body. He's on morphine, ativan, and chloral and he was just given another sedative for this current procedure. His potassium level was also high so they've stopped giving him potassium (the level was previously low). He is still getting fed.
He's had "No No's" on the last couple of days. These look a little like water wings on his arms and they are meant to keep him from getting to his tubes to pull them out but they still allow him to move his arms. This morning he was able to wiggle himself out of one of his No No's.
The doctor is going to suggest at tomorrow's meeting that Josiah has a surgery that would temporarily alleviate the TAPVD (total anomalous pulmonary venous drainage - veins going from his heart under his diaphragm and through the liver before they go back to the heart). This procedure would put a shunt from the collector vein right into his atrium. This procedure has only been done twice by the SickKids surgeons.
Our amazing, incredible nurse L. was explaining how unique Josiah's heart is. A number of his conditions are quite common but they are not usually seen all together. For example, there are approximately 20 babies a year in Canada that are hypoplast in the heart. Josiah has a hypoplast (small) right ventricle but he also has right atrial isomerism, AVSD, TAPVD, etc.which are all unique in their own right. He is indeed fearfully and wonderfully made (Psalm 139)!
--------------------
Update:
The new line to his chest went in successfully on the first try. Thank You Jesus! Grandma and Grandpa Lucas just showed up with Isaac so Graham took Grandma and Grandpa to see Josiah separately. Unfortunately Isaac isn't allowed into the CCCU.
I think it's hit home a little more that these are serious challenges and we're going from day to day. There are a number of decisions coming up, so it was good to read the following this morning:
Psalm 32:8 (NIV)
----------------------
Our nurse said she saw a tinge of red in Josiah's hair. Apparently red heads are harder to sedate. They've been amazed at the amount of sedative they've had to give him in order to keep him from thrashing around. We're glad he's a fighter.
It was just confirmed that Josiah has a blood clot in his right groin at the site of his central line. We're waiting in the atrium while the doctor and nurses try to give him another line in his right chest. Normally they would put a line right into his superior vena cava at his neck but they don't want to do that with Josiah as he has two superior vena cava which are narrower and thus having a line there would have the potential to compromise a future surgery. If they can't get this line in on the first try then they'll wait until tomorrow to put a PICC line (peripherally inserted central catheter) in him. This would go from his right arm all the way to where the superior vena cava enters the atrium. This type of line lasts longer and there is less chance of an infection. An ultrasound confirmed the blood clot but also confirmed that there is no bleeding in the brain.
What led up to this was the nurse noticed that Josiah's legs were cold and purple this morning so they gave him some heat packs. Then his right leg became swollen and gave all the clinical signs of a blood clot. They did a preliminary ultrasound to ensure that the clot wasn't in his chest and that was clear. Clots are quite common with a central line in the groin. The body is recognizing a foreign object (the line) and the blood clots around the object to attack it. There is still a risk of developing another clot wherever his new line is placed but the risk will be lower as he will be on heparin which helps stop new clots. The body will dissolve the original clot over time. This can take a few weeks to a few months during which time he'll get two injections a day.
Some of his numbers were also off this morning. His sugars were low again and they are not sure why but that number has come back up again. Also his mixed venous number was significantly down. This number shows how well the body and heart are working. He now has a large patch on his head that is a fancy saturation probe collecting information continuously. This data should correlate to his blood work that's done every few hours. His lactate is also trending up. This is a sign that the body is stressed. Thus, they are trying to keep Josiah completely sedated so that his body has to work as little as possible. They want to take the stress off his body. He's on morphine, ativan, and chloral and he was just given another sedative for this current procedure. His potassium level was also high so they've stopped giving him potassium (the level was previously low). He is still getting fed.
He's had "No No's" on the last couple of days. These look a little like water wings on his arms and they are meant to keep him from getting to his tubes to pull them out but they still allow him to move his arms. This morning he was able to wiggle himself out of one of his No No's.
The doctor is going to suggest at tomorrow's meeting that Josiah has a surgery that would temporarily alleviate the TAPVD (total anomalous pulmonary venous drainage - veins going from his heart under his diaphragm and through the liver before they go back to the heart). This procedure would put a shunt from the collector vein right into his atrium. This procedure has only been done twice by the SickKids surgeons.
Our amazing, incredible nurse L. was explaining how unique Josiah's heart is. A number of his conditions are quite common but they are not usually seen all together. For example, there are approximately 20 babies a year in Canada that are hypoplast in the heart. Josiah has a hypoplast (small) right ventricle but he also has right atrial isomerism, AVSD, TAPVD, etc.which are all unique in their own right. He is indeed fearfully and wonderfully made (Psalm 139)!
--------------------
Update:
The new line to his chest went in successfully on the first try. Thank You Jesus! Grandma and Grandpa Lucas just showed up with Isaac so Graham took Grandma and Grandpa to see Josiah separately. Unfortunately Isaac isn't allowed into the CCCU.
I think it's hit home a little more that these are serious challenges and we're going from day to day. There are a number of decisions coming up, so it was good to read the following this morning:
Psalm 32:8 (NIV)
I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you.
Thanks again everyone for praying for us and for your encouraging emails. Please don't take it personally if we can't get back to every one of them! Just know that we do read them and are strengthened by your support.
Blessings,
Elizabeth and Graham
A good night
Josiah had a good night. We have our alarm set to wake us at 6:30 so we can call the nurse before shift change. They gave him some oxygen when his saturation levels decreased. They also gave him some more sugar in his saline as his blood glucose levels were a bit low. They are looking into the reason for this.
Blessings,
Elizabeth and Graham
Blessings,
Elizabeth and Graham
Day of Rest
Today has been a day of rest for Josiah and his parents. Josiah started his feeds this morning and has been tolerating feeds well. Elizabeth's milk is given to Josiah through an NG tube. Josiah was going to have an ultrasound on his head just to rule out that he did not have a seizure yesterday but it has been rescheduled to later this week. He's been a little agitated when awake so he has been given some sedatives. We were able to help the nurse give him a bath today. The nurse's best guess is that he will be in the hospital until he has surgery but we'll find out the plan after the doctors meet on Tuesday.
Isaac has been having a great time with his uncle, aunt and cousins. It was great to have a video chat with him at supper time. The miracles of modern technology are such a blessing.
Thanks for your support and prayers!
Blessings,
Elizabeth and Graham
Isaac has been having a great time with his uncle, aunt and cousins. It was great to have a video chat with him at supper time. The miracles of modern technology are such a blessing.
Thanks for your support and prayers!
Blessings,
Elizabeth and Graham
Sunday 5 August 2012
Quite the day
Josiah is stable and sedated in CCCU but it's been quite the day.
He had a great night last night. Apparently the night nurse fell in love with him as he gave her his amazing smiles and was even laughing. I was able to hold him yesterday and they told me that I could probably start nursing him this morning. I arrived around 9:00 and the day nurse had just given him 30mLs of my milk in his NG tube as he wouldn't calm down. The milk calmed him down so I tried breastfeeding and the little chunk took 175 more mLs to make a total of 205 mLs. You may recall me writing that their goal was 90 mLs! The little boy knows how to eat which explains why he doesn't look like a heart baby. The nurse said that 8 out of 10 heart babies can't breastfeed so we praise God that he learned to do it so well!
After his first feed I went back to RMH to play with Isaac. After giving Isaac lunch, I went back to the hospital for the next feed. Josiah's arterial line had been removed and he was being moved to 4D, the cardiac ward, as he was doing so well. We probably arrived around 12:15 or 12:30. After the nurse took vitals I fed him around 1:00 and he took 105 mLs. The nurse practitioner came to see him shortly thereafter and during her visit he threw up most or all of his meal. I left around 3:00 to go back to RMH to pack in order to stay with Josiah overnight as he's in his own room on the ward and it's basically expected that a parent stays in the room. I was back at 4:00 to feed Josiah. He took 200 mLs and then I changed his diaper. He was hiccuping.
I left him around 5:00 to switch with Graham and watch Isaac. I went back in a few minutes later to get my wallet and the nurse was just calming Josiah. I switched with Graham who then called me about 10 minutes later to say that I should come back. The nurse had been holding him and he was quiet when his saturation levels suddenly dropped very low. By the time I arrived there were around 8 different people in the room and CCCU had been called. Josiah was crying and struggling to breath and his oxygen saturation levels were low. They were at least down to within the 30s. I just held his head and sang in his ear while everyone else did their jobs with oxygen and needles and IVs, etc. He was moved to the CCCU where they tried to stabilize him but eventually the doctor decided they needed to intubate him. They sedated him and gave him muscle relaxers before they intubated him. Eventually he was stable.
They took xrays and did bloodwork and he had a very long echocardiogram. They decided to give him some blood as his hemoglobin was low. His lungs looked great on the xray and his echo did not show any reason for what happened. I told them that this episode looked the same as what had happened at home in Kitchener. The doctor thinks he needs to have a surgery (it sounds like it might be the first surgery that we thought we'd skipped). This will be discussed with all the doctors and surgeons on Tuesday.
Graham called Isaac's Aunt who came to pick up Isaac along with his Grandma. He'll stay with his Aunt and Uncle and cousins for the rest of the weekend. We managed to get caught in a heavy rain when we walked back to SickKids to say goodnight to Josiah. He was waking up a little and thrashing around so he was put on more sedative. He looks so different with the tubes in his nose and all the tape keeping it in place. He was sleeping calmly when we left him.
Well it's definitely past my bedtime and I'm a little tired. :) God is in control and Josiah is in His hands. God has also provided amazing doctors and nurses to care for him. Thank you for your prayers!
Blessings,
Elizabeth and Graham
He had a great night last night. Apparently the night nurse fell in love with him as he gave her his amazing smiles and was even laughing. I was able to hold him yesterday and they told me that I could probably start nursing him this morning. I arrived around 9:00 and the day nurse had just given him 30mLs of my milk in his NG tube as he wouldn't calm down. The milk calmed him down so I tried breastfeeding and the little chunk took 175 more mLs to make a total of 205 mLs. You may recall me writing that their goal was 90 mLs! The little boy knows how to eat which explains why he doesn't look like a heart baby. The nurse said that 8 out of 10 heart babies can't breastfeed so we praise God that he learned to do it so well!
After his first feed I went back to RMH to play with Isaac. After giving Isaac lunch, I went back to the hospital for the next feed. Josiah's arterial line had been removed and he was being moved to 4D, the cardiac ward, as he was doing so well. We probably arrived around 12:15 or 12:30. After the nurse took vitals I fed him around 1:00 and he took 105 mLs. The nurse practitioner came to see him shortly thereafter and during her visit he threw up most or all of his meal. I left around 3:00 to go back to RMH to pack in order to stay with Josiah overnight as he's in his own room on the ward and it's basically expected that a parent stays in the room. I was back at 4:00 to feed Josiah. He took 200 mLs and then I changed his diaper. He was hiccuping.
I left him around 5:00 to switch with Graham and watch Isaac. I went back in a few minutes later to get my wallet and the nurse was just calming Josiah. I switched with Graham who then called me about 10 minutes later to say that I should come back. The nurse had been holding him and he was quiet when his saturation levels suddenly dropped very low. By the time I arrived there were around 8 different people in the room and CCCU had been called. Josiah was crying and struggling to breath and his oxygen saturation levels were low. They were at least down to within the 30s. I just held his head and sang in his ear while everyone else did their jobs with oxygen and needles and IVs, etc. He was moved to the CCCU where they tried to stabilize him but eventually the doctor decided they needed to intubate him. They sedated him and gave him muscle relaxers before they intubated him. Eventually he was stable.
They took xrays and did bloodwork and he had a very long echocardiogram. They decided to give him some blood as his hemoglobin was low. His lungs looked great on the xray and his echo did not show any reason for what happened. I told them that this episode looked the same as what had happened at home in Kitchener. The doctor thinks he needs to have a surgery (it sounds like it might be the first surgery that we thought we'd skipped). This will be discussed with all the doctors and surgeons on Tuesday.
Graham called Isaac's Aunt who came to pick up Isaac along with his Grandma. He'll stay with his Aunt and Uncle and cousins for the rest of the weekend. We managed to get caught in a heavy rain when we walked back to SickKids to say goodnight to Josiah. He was waking up a little and thrashing around so he was put on more sedative. He looks so different with the tubes in his nose and all the tape keeping it in place. He was sleeping calmly when we left him.
Well it's definitely past my bedtime and I'm a little tired. :) God is in control and Josiah is in His hands. God has also provided amazing doctors and nurses to care for him. Thank you for your prayers!
Blessings,
Elizabeth and Graham
Friday 3 August 2012
No More Tube!
Hi Everyone,
Josiah's tube was removed about two hours ago and he's been doing well. At first they put a tent around his head with oxygen but that didn't stay on long. He's breathing completely on his own and his oxygen saturation levels are good. He's sleeping peacefully now but whenever he wakes up he cries. His cry sounds much more weak and pathetic than usual but it's nice to hear him again. I suspect the main reason for his crying is due to the fact that his last feed was at 6:00 AM. They needed to wait at least four hours after a feed before removing the tube but there were a number of reasons that they needed to delay taking it out. After removing it they need to wait at least four more hours as there is always a small risk that he would need to be intubated again during that time. It's nice to see his entire cute face again, without all the tape for the tube. That's all the news for now. Thanks for your prayers!
Blessings,
Elizabeth
Josiah's tube was removed about two hours ago and he's been doing well. At first they put a tent around his head with oxygen but that didn't stay on long. He's breathing completely on his own and his oxygen saturation levels are good. He's sleeping peacefully now but whenever he wakes up he cries. His cry sounds much more weak and pathetic than usual but it's nice to hear him again. I suspect the main reason for his crying is due to the fact that his last feed was at 6:00 AM. They needed to wait at least four hours after a feed before removing the tube but there were a number of reasons that they needed to delay taking it out. After removing it they need to wait at least four more hours as there is always a small risk that he would need to be intubated again during that time. It's nice to see his entire cute face again, without all the tape for the tube. That's all the news for now. Thanks for your prayers!
Blessings,
Elizabeth
Thank You MPCF!
This evening I left Josiah around 7:00 to come back to RMH and say goodnight to Isaac using Facetime. How wonderful to be able to see my son in Kitchener from Toronto! After that I discovered that a group of people had made dinner for people staying at RMH. This is part of the Home for Dinner Program. It was such a wonderful surprise to find chicken burgers, sweet potato fries, lettuce salad with peppers and tomatoes, blueberries, pineapple, and cookies! I asked someone where they were from and the answer was the Michael Pinball Clemons Foundation. God bless them! I just checked out their website and their volunteers do this once a month! The first time I experienced a Home for Dinner meal in April, I nearly cried. It was such a blessing to come back from the hospital and meet strangers who had prepared a lovely meal!
I went back to the hospital and pumped around 8:30 and then I went to say goodnight to Josiah. His night nurse will just let him sleep and she'll suction him if necessary. He has been tolerating his feedings. They started him with just 5mL and they increase the amount at each feed. The goal is to get him to 90mL per feed. He has been on lasix today and it seems to be helping to eliminate some extra fluid. Many of his numbers were better today and he was awake a lot more than yesterday. It was so nice to look into his eyes and see him respond to my voice.
Now I need to correct some previous information. The rounds happen 7 days a week but at different times. There are no residents in this unit but the rounds include a doctor, fellows, nurse, nurse practitioner, respiratory therapist, and the dietitian. As I indicated previously, some bacteria grew in his urine sample but they are not attributing what is happening to that. All of the cultures taken in Kitchener came back negative. Josiah may be able to get off of his ventilator tomorrow but we'll see what happens. The doctor wants to see how he manages over the weekend before discussing his case on Tuesday. That meeting will include all the doctors and surgeons.
I met a man at dinner whose grandson recently had open heart surgery. I met a woman tonight whose six-month old baby girl is waiting for a heart transplant.
By the way, Josiah is in his own room with his own nurse. Nursing shifts are 7-7 roughly. All of the nurses have been amazing. It's time to pump and then go to sleep. I can pump at RMH. It has been advised that we don't walk outside at night around RMH so I'll probably get back here around 8:30ish each night.
I was able to have a nice surprise visit with a friend today (who makes amazing muffins!).
By the way, I forgot to let you know that when the transfer team was getting ready to change the Kitchener ventilator to their ventilator, they discovered their one did not work even though it was tested before they left Toronto. This had never happened to the team before. They ended up having to borrow GrandRiver's ventilator. In the ambulance the nurse told me that in all her time working on the team she had only ever seen 3 people on the same ventilator as most are different. If Josiah had been on a different ventilator the team would have needed to leave him and go get another one. Thank you Lord! Thanks for your prayers!
Blessings,
Elizabeth
Psalm 34:4 - I sought the Lord and He heard me and delivered me from all my fears.
I went back to the hospital and pumped around 8:30 and then I went to say goodnight to Josiah. His night nurse will just let him sleep and she'll suction him if necessary. He has been tolerating his feedings. They started him with just 5mL and they increase the amount at each feed. The goal is to get him to 90mL per feed. He has been on lasix today and it seems to be helping to eliminate some extra fluid. Many of his numbers were better today and he was awake a lot more than yesterday. It was so nice to look into his eyes and see him respond to my voice.
Now I need to correct some previous information. The rounds happen 7 days a week but at different times. There are no residents in this unit but the rounds include a doctor, fellows, nurse, nurse practitioner, respiratory therapist, and the dietitian. As I indicated previously, some bacteria grew in his urine sample but they are not attributing what is happening to that. All of the cultures taken in Kitchener came back negative. Josiah may be able to get off of his ventilator tomorrow but we'll see what happens. The doctor wants to see how he manages over the weekend before discussing his case on Tuesday. That meeting will include all the doctors and surgeons.
I met a man at dinner whose grandson recently had open heart surgery. I met a woman tonight whose six-month old baby girl is waiting for a heart transplant.
By the way, Josiah is in his own room with his own nurse. Nursing shifts are 7-7 roughly. All of the nurses have been amazing. It's time to pump and then go to sleep. I can pump at RMH. It has been advised that we don't walk outside at night around RMH so I'll probably get back here around 8:30ish each night.
I was able to have a nice surprise visit with a friend today (who makes amazing muffins!).
By the way, I forgot to let you know that when the transfer team was getting ready to change the Kitchener ventilator to their ventilator, they discovered their one did not work even though it was tested before they left Toronto. This had never happened to the team before. They ended up having to borrow GrandRiver's ventilator. In the ambulance the nurse told me that in all her time working on the team she had only ever seen 3 people on the same ventilator as most are different. If Josiah had been on a different ventilator the team would have needed to leave him and go get another one. Thank you Lord! Thanks for your prayers!
Blessings,
Elizabeth
Psalm 34:4 - I sought the Lord and He heard me and delivered me from all my fears.
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