Did you catch my double entendre in the title? Trying to be a clever writer and failing with pride ha ha ha!
Anyway, one can well imagine that I have become very comfortable in ICU with Michael officially reaching the 10 day mark of his stay. I'm at hospital for about 5 hours every day. I pop in to see Michael for 10 to 30 minutes at a time, depending on what's happening in the ward, and the rest of my time is spent either expressing or working in the waiting area.
I have gotten to know some of the nurses who tell me about their kids, their pets, their favourite foods and favourite funny videos on Facebook. They also tell me amazing stories about memorable patients; babies and children who survive against all odds or interesting situations they have experience in surgical ICU. The team is quite a wonderful group and they're all very relaxed and friendly. Michael has been a case study for three nurses who are completing their course on paediatric cardiothoracic work and I happily gave consent because there's no harm in helping to further the education of enthusiastic healthcare professionals.
I'm also getting to know some of the parents of other patients. There's Casey who I have written about before. We message and email each other to check in on our kids' progress. I met Christina just yesterday after her son had surgery. He's 5 and the nurses say it's not often they get a preschooler patient. He's the big kid among all the babies and the newest "tenant" in the ward. There's only one girl in the ward and I've told the nurses I haven't had the courage to speak to her parents yet. They always look stressed but the nurses have said maybe a friendly chat with another parent may help them and make them feel a bit more assured, especially because their little girl is improving rapidly after quite a scare last week. Finally, there's the ward's smallest but currently most senior patient because he's been there the longest. He's only a month old and he's been there for almost all of that time. I finally spoke to his mom today and now I'm helping her to find new accommodation in Cape Town as she's here from East London.
I know I'm not the first parent whose child has been there for an extended stay but it makes things a lot easier being comfortable with the people who care for my child in this time. My way of making the best of a situation has always been to integrate myself with the people and thankfully I've encountered really nice people so far. Also, we are going to be back for Michael's second surgery next year and at least we'll be going back into a situation we now know and trust.
While I am trying to not be a nuisance and also choosing to have some days where I only visit once, ICU has become a bit of a second home filled with interesting aunties, quiet children I can only gaze upon from the safe zone of Michael's bassinet, the melodic beeps and flashing colours of the monitors and the oh so unforgettable scent of antibacterial gel.
Just a little drama
Michael is definitely giving us one helluva adventure in hospital.
The week was fairly tricky and he started to look like me might show improvement over the weekend. Well, we were wrong. The nurses tried over a few days to get Michael off the respirator because he wasn't requiring any additional air, just some pressure assistance. If he was breathing on his own, it was logical to take him off the machines.
The attempt on Saturday morning didn't go well. He reacted badly and ended up being put back on the ventilator to give him a rest and he needed a visit from the cardiologist. While the suspicion was that there was fluid around his heart, it turned out that his heart was fine and there was in fact fluid around his lungs. He got some medication to encourage the fluid to be absorbed and flushed out and he was taken off the ventilator.
It was something quite amazing to see him awake after a week of seeing him asleep or sedated. I kept him company while the nurse prepared but I was asked to take a walk while they removed his tubes. The nurses said he definitely found his voice again and was doing fine but would need a bit of pressure assistance which was ok. I jumped and cheered in the ward when I saw him free of the ventilator - such a nerd.
His surgeon said the chest infection and his struggle with breathing was a setback but he was doing really well and all it takes now is some patience to allow him to recover at his own pace. It boggles my mind that he went from being on a ventilator, off the ventilator, on the respirator, off the respirator and then back on the ventilator and off again all in one week. But, all that matters is he is out of danger and improving...little by little he is moving forward.
Got milk?
With Michael receiving a limited controlled amount of breastmilk in ICU, I found myself sitting with a whole lot of breastmilk going nowhere except down the drain. This was fun for the first 2 days because I allowed myself a glass of wine and I could finally eat a bit of dark chocolate.
But then the novelty wore off and I wondered what to do with all the milk I had to continue expressing. And that's when I decided to donate my milk. I called Milk Matters and made arrangements with them to become a new donor. They told me I could collect bottles from them and, by the following morning, I was well on the wagon for milk donation. After just 3 days, I've filled almost 15 bottles and my freezer looks like a milk depot LOL!
So why donate?
It occurred to me that the reason I was continuing this crazy routine of pumping every 3-4 hours was to give my baby the best nutrition possible. For many moms and babies, this isn't possible and there are helpless little babies who would benefit greatly from receiving breastmilk. With my own child in ICU, I wanted to be able to do a small bit to help another baby and all it would cost me is the time expressing which I was already doing. Donating was a win-win situation for both me and Milk Matters.
Now my routine is to express for Michael in the morning and then my donated feeds are the afternoon and evening. I am hoping to continue donating for as long as possible because I only discovered Milk Matters shortly after Wren went on to formula feeding and it's something I have been wanting to do since then. While I never know where this milk will go eventually, it does brighten our situation to know that I am doing just a small bit to help other children grow big and strong.
Breathe
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.
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
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