Once again, it is wonderful to see my boy's eyes! They stopped the muscle relaxant this morning and Josiah seems to be tolerating it. His sats and NIRS were a little low at times but when I left him tonight his numbers were better. He has seemed quite restless and his feet move a lot but it sounds like that's normal behaviour after coming off of the muscle relaxant. He is still on a lot of sedation so although his eyes were open, they still looked glassy and he wasn't focusing too well.
I met with the nurse practitioner today. She told me previously that she needed to have a talk with me regarding the time he was on ECMO. There are followup protocols for kids who have been on ECMO. First, he will have a hearing screen done before he leaves the hospital. Some children have hearing loss as a result of ECMO. Secondly, he will see a psychologist at SickKids about a year after being discharged in order to check his developmental progress and plug him into any resources he needs. We're clearly praying that the results of these screens are positive but we're also so thankful that he has access to these resources and any help he needs. If he hadn't gone on ECMO for those few hours we would have had to wait to see if one of his other health care providers had any concerns in order to be referred to a psychologist even though his saturation levels were much worse when he wasn't on ECMO.
I've hesitated whether or not to write the above information because I really don't want everyone trying to figure out if Josiah has developmental delays or asking me if he's hitting his milestones. I don't need that stress. However, I do want to give God the glory for all the good I see coming out of a bad situation. Granted, there are a lot of risks involved with ECMO, but in Josiah's case I have a list of benefits that came his way and for that I am truly thankful to Jesus. Also, this information will help you to pray for specifics.
I also met with the EP (electrophysiology) fellow this afternoon. They stopped the medication for Josiah's arrhythmias yesterday; however, the medication has a long half-life so it will be in his body for months. They had found at least three different arrhythmias in Josiah's heart that happened because he was stressed. Though he hasn't had the arrhythmias for a couple of days, he told me that there is at least one short circuit that is ready to go off and these often don't go away on their own. It's not a big emergency if it goes off; the heart rate would be in the 160s or 180s but it didn't seem to affect his pressures or other numbers. It would just tire out his heart which is something he doesn't need.
At a minimum the plan for home would be for me to check his heart rate once a day. He told me this would be easier to do with a stethoscope. (Note: I will feel very cool if I get to have a stethoscope). There is also the option of having medicine and more testing. He was leaning towards medicine but I'm thinking it would make sense to wait and see first. Of course, if the arrhythmia happens again in hospital, it probably means we need medicine. This is something else to pray about.
Graham and Isaac will head here tomorrow night for a weekend together. It will be great to see them. It's now time to pump and then put the light off. This schedule is tiring so I'm going to try to have a nap during the day while I can.
Thanks for your prayers!
Blessings,
Elizabeth
Thursday, 6 September 2012
Wednesday, 5 September 2012
Open and Shut
Josiah's chest is now closed. A surgical fellow did the procedure this morning and it all went well. Tonight when I left him most of his numbers were good. His NIRS numbers are a little low but it's unclear if it's just a bad reading. His temperature also reached 37.8 degrees so he has a big bag of ice on his head. It's quite normal for the temperature to be elevated for about 24 hours after closing the chest. It sounds like they will try to start lifting the muscle relaxant tomorrow. He has been on continuous profusion of muscle relaxant since his surgery. Our nurse said he may have some shakes and a hard time coming off of the medication so please pray about that. She said I'll probably see him trying to cry but of course with his tube in he can't make any noise.
I met with the dietitian to find out more about Josiah's feeds. He is currently on very small amounts of portagen as his lymph system was nicked during his first surgery on the15th. I had mentioned before that he'll need to be on portagen for six weeks. As it turns out, those six weeks don't start until all of his drainage tubes come out of his chest. The dietitian said an OT will work with us to help with Josiah's feeding when it's time to transition off the NG tube.
It was a beautiful day today. Yesterday I decided to get some regular blood work done that my doctor had ordered a few months ago. While in the waiting room it didn't take me long to start thinking, "Why is only one nurse on?" and "Why is the wait so long?" Fortunately God gently reminded me of where my son is and of the incredible care he is receiving and how blessed I am to be able to walk into a hospital and get blood work done after only a short wait in a comfortable chair. How quickly I lose site of reality.
After Josiah's chest was closed I noticed a little wound up thread on his chest. I asked the nurse about the thread. She said that if they determine he needs more room in his chest, they can pull up the chest bone with this suspension thread which would be tied to something over top of Josiah. Thus the bones and also his skin would be pulled away from his heart without needing to open up the chest. She said it sounds and looks a little barbaric. It's usually used shortly after the closure so we're hoping Josiah won't need it now that he's already gone about 12 hours since the procedure.
It's time to pump once more before going to sleep. My milk supply seems to be decreasing a little so please pray about that as well. I spoke with another mom who had a long stay in the CCCU and she said her milk supply decreased so much that her daughter can't breastfeed now.
Thanks so much for your support, emails, comments, prayers, and verses. We appreciate them all so much! God is so faithful and He's taking care of all of our needs.
Blessings,
Elizabeth
I met with the dietitian to find out more about Josiah's feeds. He is currently on very small amounts of portagen as his lymph system was nicked during his first surgery on the15th. I had mentioned before that he'll need to be on portagen for six weeks. As it turns out, those six weeks don't start until all of his drainage tubes come out of his chest. The dietitian said an OT will work with us to help with Josiah's feeding when it's time to transition off the NG tube.
It was a beautiful day today. Yesterday I decided to get some regular blood work done that my doctor had ordered a few months ago. While in the waiting room it didn't take me long to start thinking, "Why is only one nurse on?" and "Why is the wait so long?" Fortunately God gently reminded me of where my son is and of the incredible care he is receiving and how blessed I am to be able to walk into a hospital and get blood work done after only a short wait in a comfortable chair. How quickly I lose site of reality.
After Josiah's chest was closed I noticed a little wound up thread on his chest. I asked the nurse about the thread. She said that if they determine he needs more room in his chest, they can pull up the chest bone with this suspension thread which would be tied to something over top of Josiah. Thus the bones and also his skin would be pulled away from his heart without needing to open up the chest. She said it sounds and looks a little barbaric. It's usually used shortly after the closure so we're hoping Josiah won't need it now that he's already gone about 12 hours since the procedure.
It's time to pump once more before going to sleep. My milk supply seems to be decreasing a little so please pray about that as well. I spoke with another mom who had a long stay in the CCCU and she said her milk supply decreased so much that her daughter can't breastfeed now.
Thanks so much for your support, emails, comments, prayers, and verses. We appreciate them all so much! God is so faithful and He's taking care of all of our needs.
Blessings,
Elizabeth
Tuesday, 4 September 2012
Decreasing Fluid
Today was another slow day of decreasing Josiah's fluid. The surgeon saw Josiah this morning and decided that he needed to lose more fluid before trying to close his chest. If he loses enough fluid tonight, they might be able to close his chest completely tomorrow.
At around 11:30 this morning, they were able to pace him out of his high heart rate. The rest of the day his heart rate was around 123 bpm. It's so nice to see it lower.
Thanks to WestJet I didn't need to make myself dinner tonight.
We had a nurse today whom we last had in April. She told me this when I called her this morning before seeing her. She must have recognized Josiah's name. She said she had thought of us recently and wondered how we were doing. It was nice to see her again.
I'm looking forward to more progress tomorrow.
Thanks so much for your support and prayers everyone!
Blessings,
Elizabeth
At around 11:30 this morning, they were able to pace him out of his high heart rate. The rest of the day his heart rate was around 123 bpm. It's so nice to see it lower.
Thanks to WestJet I didn't need to make myself dinner tonight.
We had a nurse today whom we last had in April. She told me this when I called her this morning before seeing her. She must have recognized Josiah's name. She said she had thought of us recently and wondered how we were doing. It was nice to see her again.
I'm looking forward to more progress tomorrow.
Thanks so much for your support and prayers everyone!
Blessings,
Elizabeth
Monday, 3 September 2012
Arrhythmias
An EP fellow was once again trying to figure out Josiah's arrhythmias today. He seems to have at least three different arrhythmias. The EP fellow said he is able to pace him out of them using the pacemaker in around ten seconds. Our CCCU fellow was able to pace him out when his heart rate was in the 160s but then was unable to pace him out of it when it rose to around 180. I suspect I'll learn more tomorrow.
Josiah was having an echocardiogram when I left him shortly after 6:00 PM. If the results of the echo are good, the charge nurse told me that they will shorten the stent keeping his chest open in order to get closer to closing it up. They may shorten the stent each day so that it's not a big change all at once.
Josiah is peeing and is on two diuretics but he is still quite puffy. The kidneys are clearly working but they may not be in an optimal condition due to previously being on bypass and ECMO. He isn't absorbing his small feeds yet and he is also not having bowel movements. I don't think this is overly surprising as he is on muscle relaxant but he is now on a medication which should make him have a bowel movement.
Graham and Isaac headed back to Kitchener shortly after 1:00 PM. Graham has had a cold the last couple of days so he wasn't able to see Josiah yesterday or today. It was nice to all be together but I think we'll all have a better sleep tonight as Isaac won't be in the bed. Let's just say he doesn't sleep as well here.
I hope you all sleep well tonight - especially all those returning to school tomorrow. Thanks so much for your prayers!
Blessings,
Elizabeth
Josiah was having an echocardiogram when I left him shortly after 6:00 PM. If the results of the echo are good, the charge nurse told me that they will shorten the stent keeping his chest open in order to get closer to closing it up. They may shorten the stent each day so that it's not a big change all at once.
Josiah is peeing and is on two diuretics but he is still quite puffy. The kidneys are clearly working but they may not be in an optimal condition due to previously being on bypass and ECMO. He isn't absorbing his small feeds yet and he is also not having bowel movements. I don't think this is overly surprising as he is on muscle relaxant but he is now on a medication which should make him have a bowel movement.
Graham and Isaac headed back to Kitchener shortly after 1:00 PM. Graham has had a cold the last couple of days so he wasn't able to see Josiah yesterday or today. It was nice to all be together but I think we'll all have a better sleep tonight as Isaac won't be in the bed. Let's just say he doesn't sleep as well here.
I hope you all sleep well tonight - especially all those returning to school tomorrow. Thanks so much for your prayers!
Blessings,
Elizabeth
Sunday, 2 September 2012
Cannulae Removed
Josiah's cannulae were removed this morning. Each cannula had been left in his chest after his last surgery so that if he needed to be hooked up to ECMO it wouldn't take as long. This was a sterile procedure done by a surgeon in Josiah's room.
All of Josiah's numbers look good except for his high heart rate. I think it was around 180 when I left him. His oxygen rate on the ventilator is the same as room air - 21%, so that's good news as well. He has secretions in his lungs that need to be suctioned but it's hard to get them up as he can't cough them up because he is on muscle relaxant. The nurses put saline down his tube to help with suctioning. Thankfully the secretions don't show any sign of infection. We thank the Lord that Josiah hasn't had any infections due to his stay in the CCCU.
An infection is one of the risks of having an open chest. We've received some emails asking if Josiah's chest is still open. It is open with a transparent covering. A piece of gauze just sits on top. It's amazing to be able to see his heart pumping. The nurse said he needs to get rid of more of his fluid before they'll close up his chest. When they do close up his chest, a surgical fellow will sew him up in his room. When these sterile procedures happen, all of the parents and visitors of any of the children in the room must be absent from the room.
Josiah's surgeon has been on holiday. In fact I believe the holiday started late due to Josiah. Our nurse told me that the surgeon has called the last two days to see how Josiah is doing. I also learned that two other heart surgeries were bumped last Wednesday due to Josiah's surgery. Some of the nurses were able to watch some of Josiah's surgery as the surgeon wears a video camera that provides a live feed to the nursing station. This allows the nurses to know when to expect patients out of the OR.
My brother and sister-in-law and their wonderful girls came and blessed us with their presence and a delicious dinner. Both my brother and sister-in-law were able to see Josiah just before nursing change. It was great to see them all.
We enjoyed being at St. George the Martyr church this morning. We finally made it on time to a service - it started at 10:45. It was around a ten minute walk from RMH. How lovely to be able to walk to church.
I'm writing this in the washroom as the lights are off in the main room and I don't want to wake Isaac. Isaac did not sleep very well last night. He slept so lightly that we couldn't put him in the playpen so he "slept" between us. He's been in the playpen thus far tonight so hopefully we won't hear him until the morning.
Thank you for your prayers!
Blessings,
Elizabeth
All of Josiah's numbers look good except for his high heart rate. I think it was around 180 when I left him. His oxygen rate on the ventilator is the same as room air - 21%, so that's good news as well. He has secretions in his lungs that need to be suctioned but it's hard to get them up as he can't cough them up because he is on muscle relaxant. The nurses put saline down his tube to help with suctioning. Thankfully the secretions don't show any sign of infection. We thank the Lord that Josiah hasn't had any infections due to his stay in the CCCU.
An infection is one of the risks of having an open chest. We've received some emails asking if Josiah's chest is still open. It is open with a transparent covering. A piece of gauze just sits on top. It's amazing to be able to see his heart pumping. The nurse said he needs to get rid of more of his fluid before they'll close up his chest. When they do close up his chest, a surgical fellow will sew him up in his room. When these sterile procedures happen, all of the parents and visitors of any of the children in the room must be absent from the room.
Josiah's surgeon has been on holiday. In fact I believe the holiday started late due to Josiah. Our nurse told me that the surgeon has called the last two days to see how Josiah is doing. I also learned that two other heart surgeries were bumped last Wednesday due to Josiah's surgery. Some of the nurses were able to watch some of Josiah's surgery as the surgeon wears a video camera that provides a live feed to the nursing station. This allows the nurses to know when to expect patients out of the OR.
My brother and sister-in-law and their wonderful girls came and blessed us with their presence and a delicious dinner. Both my brother and sister-in-law were able to see Josiah just before nursing change. It was great to see them all.
We enjoyed being at St. George the Martyr church this morning. We finally made it on time to a service - it started at 10:45. It was around a ten minute walk from RMH. How lovely to be able to walk to church.
I'm writing this in the washroom as the lights are off in the main room and I don't want to wake Isaac. Isaac did not sleep very well last night. He slept so lightly that we couldn't put him in the playpen so he "slept" between us. He's been in the playpen thus far tonight so hopefully we won't hear him until the morning.
Thank you for your prayers!
Blessings,
Elizabeth
Saturday, 1 September 2012
Isaac and Josiah
I just returned from the hospital. I stayed late to pump so I would not wake Isaac. A security guard walked me "home".
We had a lovely gift today. Our nurse asked us if Isaac had seen Josiah. Graham said he hadn't seen him since we arrived so the nurse invited us to bring him in as no one else was in the room. We took a few pictures together. I'm not quite sure what Isaac thought. He definitely would have been grabbing tubes and lines and touching buttons if we had not been holding him. He was quite excited that Baby Josiah gave him his Get Well balloon (thanks goes to the nurse for that great suggestion).
Today was the first day that we've heard Isaac say his whole name. Previously he's just said "I" for Isaac. He had a good time playing in the play room at the hospital.
Isaac is stirring so I'll sign off.
Blessings,
Elizabeth
We had a lovely gift today. Our nurse asked us if Isaac had seen Josiah. Graham said he hadn't seen him since we arrived so the nurse invited us to bring him in as no one else was in the room. We took a few pictures together. I'm not quite sure what Isaac thought. He definitely would have been grabbing tubes and lines and touching buttons if we had not been holding him. He was quite excited that Baby Josiah gave him his Get Well balloon (thanks goes to the nurse for that great suggestion).
Today was the first day that we've heard Isaac say his whole name. Previously he's just said "I" for Isaac. He had a good time playing in the play room at the hospital.
Isaac is stirring so I'll sign off.
Blessings,
Elizabeth
Baby Angelo
The laundry room was packed last night so I was planning to put a load in at 6:30 after my alarm went off this morning. I woke up at 7:42. It appears that the volume was too low on the iPod. It may have been that I needed to meet Baby Angelo's dad in the laundry room when I switched the load from the washer to the dryer. I've seen this family around but I just introduced myself this morning. Baby Angelo arrived here shortly after we did. There's a lot wrong with Baby Angelo and there's not much hope. They don't think they'll be taking him home and he's never been home. I told the dad that I would be praying and asked if I could write about Baby Angelo and ask others to pray and he agreed. So, please pray for this family.
I just spoke with Josiah's nurse. There hasn't been much change since yesterday and it doesn't sound like there are big plans for today (typical for the weekend).
Graham just called and he and Isaac are on the way. Have a great day!
Blessings,
Elizabeth
I just spoke with Josiah's nurse. There hasn't been much change since yesterday and it doesn't sound like there are big plans for today (typical for the weekend).
Graham just called and he and Isaac are on the way. Have a great day!
Blessings,
Elizabeth
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