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
Monday, 6 August 2012
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.
Thursday, 2 August 2012
Laundry Time!
I went to the hospital this morning, planning to stay all day. I went and saw Josiah who was sleeping and then I went to pump milk. I managed to get milk all over my pants so now I'm back at RMH and my clothes are in the washing machine. We are able to do laundry for free here - what a blessing! Right after pumping, I was able to hear the doctors rounds. Twice a day (Monday to Friday), the doctor, fellows, residents, and perhaps others walk around and discuss each patient. It sounded like there may have been growth of something in the culture of his urine but I'll get the details on that later. This morning they are taking another sample of fluid from his lungs as something happened to the sample taken yesterday. They are going to start feeding him now so the nurse will meet with the dietitian but he'll be able to have the milk I've pumped.
The nurse said that Josiah slept last night and did not need to be sedated. He is still on a low dose of morphine mainly due to the discomfort of the tubes down his nose and throat but the amount will be further reduced today. He has been waking up and looking around without getting agitated and his oxygen saturation levels have remained stable. The only times they are going down is when he is being suctioned but that's to be expected. She did say that he is tolerating the suctioning better and she was able to get him to cough up some fluid himself.
I was reading Psalm 33 this morning (while I should have been making sure my pump wasn't overflowing!) and I was struck by verse 15 which says, "He fashions their hearts individually" (NKJV). God knows what's happening in Josiah's heart. Verses 20-22 say, "Our soul waits for the Lord; He is our help and our shield. For our heart shall rejoice in Him, because we have trusted in His holy name. Let Your mercy, O Lord, be upon us, just as we hope in You."
Isaac was happy to see his Daddy this morning. We were able to do Facetime so I was able to see him too! Isaac gave me a kiss on the screen and also had his teddy kiss me. He was enjoying sending cars down the ramp his Grandpa set up from the couch to the floor. He hasn't been eating very well so please pray that his appetite improves. Have a great day! It's a beautiful sunny day in Toronto. Thanks so much for your prayers!
Blessings,
Elizabeth
The nurse said that Josiah slept last night and did not need to be sedated. He is still on a low dose of morphine mainly due to the discomfort of the tubes down his nose and throat but the amount will be further reduced today. He has been waking up and looking around without getting agitated and his oxygen saturation levels have remained stable. The only times they are going down is when he is being suctioned but that's to be expected. She did say that he is tolerating the suctioning better and she was able to get him to cough up some fluid himself.
I was reading Psalm 33 this morning (while I should have been making sure my pump wasn't overflowing!) and I was struck by verse 15 which says, "He fashions their hearts individually" (NKJV). God knows what's happening in Josiah's heart. Verses 20-22 say, "Our soul waits for the Lord; He is our help and our shield. For our heart shall rejoice in Him, because we have trusted in His holy name. Let Your mercy, O Lord, be upon us, just as we hope in You."
Isaac was happy to see his Daddy this morning. We were able to do Facetime so I was able to see him too! Isaac gave me a kiss on the screen and also had his teddy kiss me. He was enjoying sending cars down the ramp his Grandpa set up from the couch to the floor. He hasn't been eating very well so please pray that his appetite improves. Have a great day! It's a beautiful sunny day in Toronto. Thanks so much for your prayers!
Blessings,
Elizabeth
Wednesday, 1 August 2012
Josiah News
Hi Everyone,
Graham just left to drive back to Kitchener after saying goodnight to Josiah and dropping me off at Ronald McDonald House (RMH). He worked remotely today from RMH and I mainly watched Josiah and pumped milk every three hours or so. The view from our room at RMH is great at night. The moon looks beautiful - almost full - and I can see the elevators going up and down the CN Tower.
We spoke with the doctor today. At this point it's not looking like Josiah has an infection, though it is still possible. If all of the tests come back negative for an infection, then it's assumed that the problem is with the heart, even though the echocardiogram didn't show differences. The way he explained it is that Josiah has in a sense always had two obstructions: 1) The blood in the pulmonary veins goes from the lungs, down beneath the diaphragm and through the liver before going back to the heart so this in itself has been an obstruction since before birth, and 2) the pulmonary stenosis (narrowing of the pulmonary artery that goes from the heart to the lungs) has also been an obstruction. Until now, these obstructions have balanced each other but it may be that he has become unbalanced and thus may be experiencing some heart failure.
Josiah was quite restless this morning; whenever the sedatives started to wear off he would thrash about. They experimented with amounts and different sedatives and then he calmed down. When he wasn't calm, his oxygen saturation would decrease and his heart rate would increase. The night nurse just told us that they are giving him a little more support with his breathing and he seems more comfortable and he's sleeping on his own without a sedative. They are keeping the lungs open a little so that he doesn't have to work as hard at breathing (he's still getting oxygen from a ventilator). She explained that it's like blowing up a balloon - it's easier to blow it up when there's already some air in the balloon. Josiah has fluid in his lungs so she thinks they may start him on a diuretic tomorrow. They suctioned him a few times today. The nurse will just let him sleep tonight and only give him a sedative if necessary. It sounds like they'll start weaning him off the sedatives and the breathing support once the fluid is under control and see if he's able to breath on his own, etc. They haven't started feeding him yet - they've just kept him hydrated. If they don't start feeding him tomorrow then the dietitian will give him something that has all the vitamins and minerals he needs through the IV. Some of his blood work this afternoon came back with better numbers so that's encouraging.
The doctor said that a team of doctors will discuss next steps in a meeting next Tuesday. I think he was referring to next surgical options. It sounds like we might still be here then. Apart from missing Isaac, I wouldn't say it's too stressful right now. I know Josiah is in good hands so that's a relief and I've been able to get some rest. I also know Isaac is in great hands with his grandparents. He wanted to look at a photo of Daddy and Mommy today and he wanted to take his stuffed animals with him to his grandparents. I'm sure he'll be happy to see his Daddy in the morning and then tomorrow night after work. Graham will bring him to Toronto on Friday night and then we'll be together for the long weekend, taking turns with Josiah and Isaac as Isaac will not be allowed in the CCCU. I'm looking forward to giving him hugs and kisses and hoping he'll sleep at night.
I will try to write regular updates but oftentimes today I couldn't get on a computer or the Internet connection wasn't working. It's always great to get emails from people just letting us know that you're praying for us. It's encouraging to read. Please understand if you do not receive a response. Have a great night! I'll pump once more and then head to bed.
Blessings,
Elizabeth (and Graham)
Graham just left to drive back to Kitchener after saying goodnight to Josiah and dropping me off at Ronald McDonald House (RMH). He worked remotely today from RMH and I mainly watched Josiah and pumped milk every three hours or so. The view from our room at RMH is great at night. The moon looks beautiful - almost full - and I can see the elevators going up and down the CN Tower.
We spoke with the doctor today. At this point it's not looking like Josiah has an infection, though it is still possible. If all of the tests come back negative for an infection, then it's assumed that the problem is with the heart, even though the echocardiogram didn't show differences. The way he explained it is that Josiah has in a sense always had two obstructions: 1) The blood in the pulmonary veins goes from the lungs, down beneath the diaphragm and through the liver before going back to the heart so this in itself has been an obstruction since before birth, and 2) the pulmonary stenosis (narrowing of the pulmonary artery that goes from the heart to the lungs) has also been an obstruction. Until now, these obstructions have balanced each other but it may be that he has become unbalanced and thus may be experiencing some heart failure.
Josiah was quite restless this morning; whenever the sedatives started to wear off he would thrash about. They experimented with amounts and different sedatives and then he calmed down. When he wasn't calm, his oxygen saturation would decrease and his heart rate would increase. The night nurse just told us that they are giving him a little more support with his breathing and he seems more comfortable and he's sleeping on his own without a sedative. They are keeping the lungs open a little so that he doesn't have to work as hard at breathing (he's still getting oxygen from a ventilator). She explained that it's like blowing up a balloon - it's easier to blow it up when there's already some air in the balloon. Josiah has fluid in his lungs so she thinks they may start him on a diuretic tomorrow. They suctioned him a few times today. The nurse will just let him sleep tonight and only give him a sedative if necessary. It sounds like they'll start weaning him off the sedatives and the breathing support once the fluid is under control and see if he's able to breath on his own, etc. They haven't started feeding him yet - they've just kept him hydrated. If they don't start feeding him tomorrow then the dietitian will give him something that has all the vitamins and minerals he needs through the IV. Some of his blood work this afternoon came back with better numbers so that's encouraging.
The doctor said that a team of doctors will discuss next steps in a meeting next Tuesday. I think he was referring to next surgical options. It sounds like we might still be here then. Apart from missing Isaac, I wouldn't say it's too stressful right now. I know Josiah is in good hands so that's a relief and I've been able to get some rest. I also know Isaac is in great hands with his grandparents. He wanted to look at a photo of Daddy and Mommy today and he wanted to take his stuffed animals with him to his grandparents. I'm sure he'll be happy to see his Daddy in the morning and then tomorrow night after work. Graham will bring him to Toronto on Friday night and then we'll be together for the long weekend, taking turns with Josiah and Isaac as Isaac will not be allowed in the CCCU. I'm looking forward to giving him hugs and kisses and hoping he'll sleep at night.
I will try to write regular updates but oftentimes today I couldn't get on a computer or the Internet connection wasn't working. It's always great to get emails from people just letting us know that you're praying for us. It's encouraging to read. Please understand if you do not receive a response. Have a great night! I'll pump once more and then head to bed.
Blessings,
Elizabeth (and Graham)
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