Oh how things have changed...
24 hours post op, Michael was performing like a champion. Got off his respirator, was holding his own and everything was hunky dory. By 48 hours post op, he wasn't doing so good anymore. He went back on the respirator for breathing assistance and he was getting weaker.
Yesterday, we were informed he has a chest infection. He's getting vitamin supplements, antibiotics, regular physiotherapy and suction to get as much of the fluid secretions off his lungs as possible. We don't know when he'll be leaving ICU but he's getting all the help they can provide to deal with the infection.
This morning he was rather wheezy despite physio and suction but he wasn't breathing as hard or uncomfortably has yesterday. It's not nice to see him have to work so hard to breathe but the oxygen he's receiving does help quite a bit.
I officially got a bit stressed yesterday when there was little change. Spent most of the past two days at hospital although I don't get to see him for much of that time. I try to not hang around in the ICU ward too much because I know the nurses need to focus and work without a parent hovering. Also, I can't do anything really while I am in there. He's sleeping so I talk to him for a bit and stroke his arm or his tummy. After 10 minutes, it's hard to not feel like you're in the way so I prefer to pop in for short visits more regularly than lurk for too long.
For all of us, the only thing we can do now is just breathe...relax, take things as they come and go from there.
An unexpected joy
Before Michael's surgery, we were told to go pass the time and come back at noon. That's precisely what we did but, due to a crisis with another baby in ICU, we had to go to the waiting area. After a while, I went to get a snack and, when I got back, I found Trevor chatting to the woman who was sitting across from us.
Well, her name is Casey. She and her family are from the USA, her husband works for UNICEF and they live in Uganda. When I left the waiting area, Dr Vosloo came to speak to Trevor and also spoke to her about her daughter. She remarked that our children had similar cases so Trevor and Casey started chatting.
It turns out that her family's story is almost identical to ours. They have a 2 year old daughter, had a great 2nd pregnancy, found out their daughter Sasha has Down Syndrome when she was 10 days old and they learnt of her heart defect shortly after. There are, of course, a few differences. Sasha's defect is somewhat different to Michael's, she's a bit older than him and she had to have a repair done although the original plan was for her to also do the PA banding before repair next year.
Anyhoo, medical stuff aside, we had such a great talk about the experience of receiving the diagnosis, all the emotional difficulties, managing a toddler and all this info with a newborn. We talked about the feelings, peoples' response, plans for the future and research. It was incredible to find another family who experienced everything we had experienced.
Casey's done quite a lot of research and she's a teacher so she's passed on some great information to me and we're giving them tips on doctors and stuff here in SA. Because they live in Uganda, her approach to Sasha and Down Syndrome is very practical and hands-on due to the lack of infrastructure and support they have there. Trevor and I are also quite keen on that because we want to be able to support Michael in any way we can with early intervention.
It's something of a miracle that we met these great people and that we clicked so quickly. I said to Casey today that it's going to be quite nice to have a day or two in the paeds ward together so I can meet her daughter properly and she can see Michael. They'll only be in Cape Town for another 3 weeks so I hope we'll all be able to get together with the kids outside of hospital before they head back home. Seems we got a healthier kiddo and some new friends.
Well, her name is Casey. She and her family are from the USA, her husband works for UNICEF and they live in Uganda. When I left the waiting area, Dr Vosloo came to speak to Trevor and also spoke to her about her daughter. She remarked that our children had similar cases so Trevor and Casey started chatting.
It turns out that her family's story is almost identical to ours. They have a 2 year old daughter, had a great 2nd pregnancy, found out their daughter Sasha has Down Syndrome when she was 10 days old and they learnt of her heart defect shortly after. There are, of course, a few differences. Sasha's defect is somewhat different to Michael's, she's a bit older than him and she had to have a repair done although the original plan was for her to also do the PA banding before repair next year.
Anyhoo, medical stuff aside, we had such a great talk about the experience of receiving the diagnosis, all the emotional difficulties, managing a toddler and all this info with a newborn. We talked about the feelings, peoples' response, plans for the future and research. It was incredible to find another family who experienced everything we had experienced.
Casey's done quite a lot of research and she's a teacher so she's passed on some great information to me and we're giving them tips on doctors and stuff here in SA. Because they live in Uganda, her approach to Sasha and Down Syndrome is very practical and hands-on due to the lack of infrastructure and support they have there. Trevor and I are also quite keen on that because we want to be able to support Michael in any way we can with early intervention.
It's something of a miracle that we met these great people and that we clicked so quickly. I said to Casey today that it's going to be quite nice to have a day or two in the paeds ward together so I can meet her daughter properly and she can see Michael. They'll only be in Cape Town for another 3 weeks so I hope we'll all be able to get together with the kids outside of hospital before they head back home. Seems we got a healthier kiddo and some new friends.
24 Hours Post Op
How's Michael doing? (We know that's the question everybody wants answered)
We are happy to say that he is doing really well.
Firstly, the nurses were impressed with how he held up during surgery and he's been strong in ICU. He was given additional fluids, blood and breathing assistance from a respirator plus he was to be kept under sedation for the first 24-36 hours after surgery. It looks and sounds like a bad situation but it really isn't. When we saw him an hour after surgery, I was surprised at how healthy he looked. Not at all pale or worn from the operation.
It was really weird coming home with no baby. Trevor and I laughed at how we kept thinking he was sleeping in his bed so we had to remind ourselves there was no need to be quiet, keep the lights low or plan everything around an evening feed. So, we indulged a lovely soak in the bath, watched Suits in bed and had 8 undisturbed hours of deep sleep.
I went to the hospital after church to see how the little guy was getting on. His ICU nurse told me he was being rather lazy and didn't want to breathe on his own on her first attempt to remove his respirator. I spoke to him for a few minutes and he was moving and wiggling in his sleep. So, the head nurse and the physio said it was time to try taking him off the respirator again as his breathing pattern had improved in the hour since their first attempt. And, he was indeed ready as he started breathing just fine on his own once the apparatus was removed.
Now that he is minus a few tubes, the next step is to give him some breastmilk since he's only been receiving fluids via a drip since the operation. I feel like a cow being milked on a regular basis. I really do take my hat off to women who pump exclusively because this expressing milk thing for every feed is a bit hectic.
Trevor will be visiting Michael this evening to hear what the plan of action is for tomorrow but the ICU nurse says he is doing great for such a small person. She also says that every time she tries to get him to lie straight, he twists himself off to the left...that's my boy! Still doing whatever he likes even under heavy medication and with tubes in his nose LOL!
We are happy to say that he is doing really well.
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| Can still see dem chubby cheeks under the tubes |
It was really weird coming home with no baby. Trevor and I laughed at how we kept thinking he was sleeping in his bed so we had to remind ourselves there was no need to be quiet, keep the lights low or plan everything around an evening feed. So, we indulged a lovely soak in the bath, watched Suits in bed and had 8 undisturbed hours of deep sleep.
I went to the hospital after church to see how the little guy was getting on. His ICU nurse told me he was being rather lazy and didn't want to breathe on his own on her first attempt to remove his respirator. I spoke to him for a few minutes and he was moving and wiggling in his sleep. So, the head nurse and the physio said it was time to try taking him off the respirator again as his breathing pattern had improved in the hour since their first attempt. And, he was indeed ready as he started breathing just fine on his own once the apparatus was removed.
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| Looking good 27 hours after surgery |
Now that he is minus a few tubes, the next step is to give him some breastmilk since he's only been receiving fluids via a drip since the operation. I feel like a cow being milked on a regular basis. I really do take my hat off to women who pump exclusively because this expressing milk thing for every feed is a bit hectic.
Trevor will be visiting Michael this evening to hear what the plan of action is for tomorrow but the ICU nurse says he is doing great for such a small person. She also says that every time she tries to get him to lie straight, he twists himself off to the left...that's my boy! Still doing whatever he likes even under heavy medication and with tubes in his nose LOL!
Hello Hospital
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| "So they call you Superman..." |
In the past two months, both my children have been in hospital. I told my friends with Michael's stay that I suspected it wouldn't be my last time in a paediatrics ward and I was right as we discovered Michael's heart defect and Wren was admitted less than a week later with massive infections.
Now, we're doing hospital yet again. This time I'm in an unfamiliar hospital and 30kms away from home.
I have to say that Chris Barnard Memorial has been pretty good so far. Admission was quick, the nurses in the paeds ward are very warm, friendly and helpful and they were quite efficient in getting all Michael's tests done.
We blitzed through chest X-rays, an ECG, swabs, weighing him and getting him hooked up to the pulse/Ox machine in under 2 hours. The only unpleasant experience was his blood draw which was not only long but difficult. Let's just say the nurse didn't do the most efficient job and it hurt much more than it should. Daddy Trev wasn't impressed at all and we all felt a bit traumatized after it was done.
Michael got fed, wrapped in a blanket and left to sleep off the busy time he had coming into hospital while Mommy and Daddy went to get a much needed meal.
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| Trevor sitting in the afternoon sun passing the time |
Michael's surgery is taking place at 09:30 which means he has to get his last milk feed at 03:00...yup, I have to set my alarm and feed him then for the first time in weeks. He has to get a serious bath before surgery so that's happening at 05:30 and he then he can't get any fluids from 6am, yikes! They'll start prepping him for surgery from 08:00, his operation will begin at 09:30 and then he'll be done somewhere between 11:30 and noon. That's one helluva morning for all of us!
Now that I know how hectic tonight and tomorrow morning are going to be, I'm nervous. Part of me wants to sleep and another part of me is too nervous to close my eyes and start the cycle of broken sleep for the night. I'm also nervous because Michael will be denied milk while he's awake and being prepped for surgery and that's pretty hectic for an 8 week old who spends his days doing nothing but feeding and sleeping. He has yet to take a bottle which compounds the situation but I guess we're just going to have to make do and improvise.
It's been wonderful receiving so many heartfelt messages offering prayers and thoughts for the little guy. It means the world to us and we know so many people are carrying us in their hearts. I want to get a plane to sky write "thank you" because that's the biggest font size possible and even that doesn't fully cover the true enormity of the gratitude we feel. There's that thing on the back of taxis which reads "When days are dark, friends are few" Well, not for us. Our days are quite bright and it's thanks to the many people; friends, family, doctors and nurses, who are helping us and guiding us through this experience.
Thanks to you all from the bottom of our hearts xoxo
A broken heart
As Michael entered his 4th week, he developed major nasal congestion. It got so bad that he started setting off his Angelcare monitor while he struggled to breathe past all the gunk in the back of his nose.
I took him straight to his paediatrician who confirmed he definitely had bad congestion but he was concerned about the monitor going off. He admitted Michael to hospital for apnea observation and we agreed to him running a battery of tests on Michael which would have to be done anyway at some or other time.
So, off we went to Mediclinic Durbanville for a 48 hour stay. There were blood tests, X-rays, ultrasound, an ECG and an appointment with a paediatric cardiologist for a thorough look at his heart. All the tests were fine albeit tiring and Michael was quite the trooper with all the positioning, poking and prodding going on.
The big one was the cardiologist's appointment. The little guy slept through his cardiac ultrasound and it was a good thing because it gave us time to process the news we received.
Michael has an atrioventricular septal defect. Children with Trisomy 21 often have a heart condition and he has one of the more common varieties. I've included a picture which illustrates the defect here.
In Michael's case, the defect is quite complicated so a full repair won't happen until he's a toddler. To help his body cope, he is getting a pulmonary artery banding. This will reduce the excess blood flowing through his lungs to only what he needs and take some strain off his heart until the repair can happen. He still has good blood flow and little mixing but the defect is creating flow imbalances to his other organs and his heart is enlarged.
When we heard this, we weren't even shocked. We were kind of expecting things to go wrong and to hear more bad news. However, this is something that can be fixed and he has the best paediatric heart surgeon in the country. It's not great knowing our infant is undergoing major surgery but it's better than him suffering through heart failure which is the eventual complication of his defect.
The surgery is taking place on 25 July at Christiaan Barnard Memorial hospital and it's going to be a 7-10 day stay while he recovers. The surgeon, Dr Susan Vosloo, is very confident there will be no problems and he is healthy in every other way so he's in good condition for surgery.
We aren't nervous (yet) for the surgery, more concerned about Michael after. It's not nice to see a little baby who cannot communicate that he is pain and we wonder how he'll be fed when the incision is on his side. Dr Vosloo assured us that he will be pain free or comfortable at the least as they like to make sure the babies are cared for. As for feeding, well we'll have to see how to cross that bridge when we get there.
It's going to be weird leaving Michael in ICU while I come home but I am learning to let go and trust in others tasked with caring for this little person. I have come around to the conclusion that what must be will be and all I can do is have faith.
I took him straight to his paediatrician who confirmed he definitely had bad congestion but he was concerned about the monitor going off. He admitted Michael to hospital for apnea observation and we agreed to him running a battery of tests on Michael which would have to be done anyway at some or other time.
So, off we went to Mediclinic Durbanville for a 48 hour stay. There were blood tests, X-rays, ultrasound, an ECG and an appointment with a paediatric cardiologist for a thorough look at his heart. All the tests were fine albeit tiring and Michael was quite the trooper with all the positioning, poking and prodding going on.
The big one was the cardiologist's appointment. The little guy slept through his cardiac ultrasound and it was a good thing because it gave us time to process the news we received.
Michael has an atrioventricular septal defect. Children with Trisomy 21 often have a heart condition and he has one of the more common varieties. I've included a picture which illustrates the defect here.
In Michael's case, the defect is quite complicated so a full repair won't happen until he's a toddler. To help his body cope, he is getting a pulmonary artery banding. This will reduce the excess blood flowing through his lungs to only what he needs and take some strain off his heart until the repair can happen. He still has good blood flow and little mixing but the defect is creating flow imbalances to his other organs and his heart is enlarged.
When we heard this, we weren't even shocked. We were kind of expecting things to go wrong and to hear more bad news. However, this is something that can be fixed and he has the best paediatric heart surgeon in the country. It's not great knowing our infant is undergoing major surgery but it's better than him suffering through heart failure which is the eventual complication of his defect.
The surgery is taking place on 25 July at Christiaan Barnard Memorial hospital and it's going to be a 7-10 day stay while he recovers. The surgeon, Dr Susan Vosloo, is very confident there will be no problems and he is healthy in every other way so he's in good condition for surgery.
We aren't nervous (yet) for the surgery, more concerned about Michael after. It's not nice to see a little baby who cannot communicate that he is pain and we wonder how he'll be fed when the incision is on his side. Dr Vosloo assured us that he will be pain free or comfortable at the least as they like to make sure the babies are cared for. As for feeding, well we'll have to see how to cross that bridge when we get there.
It's going to be weird leaving Michael in ICU while I come home but I am learning to let go and trust in others tasked with caring for this little person. I have come around to the conclusion that what must be will be and all I can do is have faith.
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