Sunday, July 17, 2016
Saturday night had been rough. James had been in a lot of pain and was getting up every 45 minutes. I kept trying to feed him but he was in so much pain all he would do was bite and scream. Our nurse let him skip one feeding, hoping that he would eat later in the night, but come 3am he was still in pain and refusing to eat. So, it was back to the NG tube. By morning I was exhausted but James finally seemed to be handling the pain a bit better. The morphine he'd had before bed didn't seem to last as long as it usually does for him but now he was tired so that 6am dose hit him fast.
Saturday night had been rough. James had been in a lot of pain and was getting up every 45 minutes. I kept trying to feed him but he was in so much pain all he would do was bite and scream. Our nurse let him skip one feeding, hoping that he would eat later in the night, but come 3am he was still in pain and refusing to eat. So, it was back to the NG tube. By morning I was exhausted but James finally seemed to be handling the pain a bit better. The morphine he'd had before bed didn't seem to last as long as it usually does for him but now he was tired so that 6am dose hit him fast.
* As an aside, I had noticed that particularly first thing in the morning James voice is very husky and rough sounding. I know this is a normal side effect of removing the the ventilator tube because it irritates the vocal folds and causes inflammation, but it freaks me out because detecting vocal issues is a big part of my job. Vocal folds don't have pain receptors in them so if they're actually damaged and not just irritated you'd only really know by listening. I don't think his is damage but I asked our nurse how long the irritation lasts and when/if I should look into getting a referral for him to a speech pathologist and she said she honestly had no idea. They usually go home before that side effect goes away and no one had ever asked her before. So I'll probably just ask with our pediatrician when we get home since he needs a physical within 7 days of discharge anyway.*
James was finally settled and Chris had arrived just in time for rounds. His JP tubes had basically stopped draining so they put a call in to the surgical team to have them taken out later that morning. And as for the eating, they still needed a full 24 hour period of quality Q3 feeds before we could be sent home. So, they put in the req to have his NG tube removed as well so that no one would be tempted to use that if he wasn't eating right away. They seemed to have a lot of confidence in the idea that he would eat better once the JP tubes were out and I was certainly on board.
Not too long after the team had moved on to the next room for rounds the surgical fellow came up to remove the tubes. For someone with no medical background it's weird to see tubes coming out of your kid, but then to see them unbandaged... it's so weird. I never actually get sick seeing those kinds of things but it does kind of make my stomach turn. And since James was already upset from having the tubes taken out they went ahead and pulled the NG tube too to get it all over with in one go. Just like that my baby was tube free! Just the leads and an IV were left.
While they were doing the procedure the nurse had noticed me taking pictures. She didn't mind at all but was curious to see some of the shots. I told her I was in no way a photographer, just kind of picking it up as a hobby. She liked a few of my shots and made an interesting comment. She mentioned that it was cool to see this experience through the eyes of a parent. She said that how I took the pictures and where I placed my focus was much different than if she was taking the pictures as a nurse, which would still be different than how a surgeon or doctor would compose the photos. It was an interesting idea, and it would be really cool to compare photos from those different perspectives. And if James was older, it would be neat to see how his pictures would look and what his perspective would be on the situation.
While they were doing the procedure the nurse had noticed me taking pictures. She didn't mind at all but was curious to see some of the shots. I told her I was in no way a photographer, just kind of picking it up as a hobby. She liked a few of my shots and made an interesting comment. She mentioned that it was cool to see this experience through the eyes of a parent. She said that how I took the pictures and where I placed my focus was much different than if she was taking the pictures as a nurse, which would still be different than how a surgeon or doctor would compose the photos. It was an interesting idea, and it would be really cool to compare photos from those different perspectives. And if James was older, it would be neat to see how his pictures would look and what his perspective would be on the situation.
James has never been a fan of all the tubes and wire and taken out his own NG tubes in the past. He especially dislikes being intubated or having a nasal cannula so he's had his hands tied to the bed more than once during his various hospital stays. But this time around something that really helped were those hospital gowns we had bought from Itty Bitty Baby. Honestly, we'd bought them because we thought they were cute and liked the idea of him wearing his own clothes with a soft material better than a hospital gown or going naked. What we hadn't anticipated was how helpful they were in keeping him from tugging at his leads and tubes! Out of sight, out of mind for this monkey. We didn't even really recognize what a difference it had made until one day he had to spend the afternoon with just a blanket because he had made a mess on both gowns and Chris had brought them back to the hotel to clean them. Oh my goodness. This squirmy little guy was pulling at everything! You could cover him up with the blanket but 30 seconds later he'd kicked the blanket off and was back at it! Those gown really helped to make our job a little bit easier.
And speaking of making things easier, the reason I wasn't able to blog as regularly as I had during his initial surgery in January is that James is more active and requires way more attention to keep him happy and occupied in bed. As an infant if he wasn't in pain he was probably sleeping. But now, anyone who knows James can tell you he's a very social and active boy. He LOVES to play and interact with people. That made our job a lot more hands on this time around. And it also meant that I had a lot less time to write. My intention had been to write at night after he went to sleep, but I was just too tired most of the time and needed the sleep myself. I know it sounds crazy to go to bed at 9:30pm but with how little sleep I was getting and the number of times I was getting up in the night, I needed it.
Feeling Better
As soon as James had a moment to catch his breath and the pain from removing the JP's had subsided, he instantly began to perk up. Hour by hour he became more like his old self! It was like night and day! He was allowed to go off the monitors in between his 3 hour check-ins for vitals and was already much more mobile. He was rolling on to his sides (not on to his tummy but on his sides), reaching over his head for toys, scootching all over his crib to explore the space... it was incredible! He was even able to sit up without pain now which made for a much happier boy. And since we were able to get him off the monitors for longer periods of time, we'd been given the go ahead to take him for a walk outside! Fresh air and sunshine do a person good and I think it was just as beneficial to Chris and I to be able to take him outside as it was to James himself.
As soon as James had a moment to catch his breath and the pain from removing the JP's had subsided, he instantly began to perk up. Hour by hour he became more like his old self! It was like night and day! He was allowed to go off the monitors in between his 3 hour check-ins for vitals and was already much more mobile. He was rolling on to his sides (not on to his tummy but on his sides), reaching over his head for toys, scootching all over his crib to explore the space... it was incredible! He was even able to sit up without pain now which made for a much happier boy. And since we were able to get him off the monitors for longer periods of time, we'd been given the go ahead to take him for a walk outside! Fresh air and sunshine do a person good and I think it was just as beneficial to Chris and I to be able to take him outside as it was to James himself.
I'm glad we were able to get outside for a bit too because with the Q3 feeding schedule I basically wasn't allowed to leave his side. And as beautiful as this hospital is, and even with having a private room (we got lucky on that one), that feeling of being stuck in one place really gets to you. I had been going for lots of walks of course and the sunshine is wonderful, but hospitals are busy and noisy, and if I'm not able to get some quiet I like to at least get in a workout to let off some steam. Since that wasn't an option I had to improvise. I did about 10 minutes of intervals on the stairs switching between sprinting, skipping steps, and leg lifts, then with baby in tow I did some goblet squats and then lunges down the hall. And apparently I did a pretty good job because my legs were actually sore the next day. Win!
All that excitement of being a human weight for his mum had helped to get James good and sleepy too. I was hoping that the night would go better than the previous one since our discharge was hanging on things going well. I wasn't looking forward to getting up every three hours to feed him since he basically sleeps through the night at home, but I knew what I had to do. We gave him his Tylenol and a fresh diaper, I set my alarm for midnight and we were off to bed... or so we thought. James was wide eyed and just wanted to play! We put on his star light that makes this cool night sky on the ceiling, we put on the mobile for music (since it doesn't actually spin) we rocked the crib... nothing. So we let him play with his toes while Chris and I decided to watch some Buzzfeed Try Guys videos on Youtube since Netflix wasn't working on the hospital wifi. I casually looked up at one point and saw James, fingers sticking out of the crib, arched back, watching Youtube with us! It was hilarious! Chris and I couldn't help but laugh which made James laugh, and then we knew we were in trouble. No more Youtube. Also, at this point James had decided he didn't like the orientation on the crib and scootched himself sideways so that his head was towards me and his feet were towards the bed. We're not sure why this was his position of choice, but whatever, it worked for him!
Monday, July18, 2016
The rest of the night had actually gone really well! James had needed another dose of Advil at midnight but otherwise had an uneventful sleep. I got him up for feeds every three hours, and he was able to go right back to sleep afterwards without any issues.
Come morning we were excited to hear what they would say in rounds. I mean at this point we'd checked all three boxes. He was on room air and wasn't desating lower than 80, he had exclusively breastfed for 24 hours and had a good poop, and all his tubes were out! But of course being Monday morning, rounds got off to a slow start. It didn't help that we were also one of the last rooms on rounds. So while rounds started at 7:30am, they didn't actually get to our bed until 9:45! The good news was they were happy with his progress! It sounded like we might even be discharged that day! The last thing we needed to do before that could happen was an echocardiogram, a chest x-ray, and a physicians assessment. Chris had taken James for the echo earlier that morning while I waited for rounds, and we were now off to the x-ray lab. I don't know if it's because the technician was different but this time around they let both Chris and I in the room for the chest x-ray. I can't imagine that was very comfortable for him postoperatively, but it needed to be done. Interesting thing was we got to see that he now has 6 chest ties instead of 5 like he had after his first surgery. But things looked good as far as we could tell, so we headed back up to the room to wait for results.
After a few hours with no update on the situation we decided to bring James down to the cafeteria for some lunch. By the time we got back they informed us that they had received all the medical reports back and he was cleared for discharge and flight, but we still needed the physicians examination and our doctor had just left for a meeting. She handed me a folder and told us she would come get us when he was ready. So we headed to the beach to pick up the treasure life beads to add to his collection and then waited in the labyrinth for our call.
The folder had the medical reports from hematology, the echocardiogram and the chest x-ray. I don't know if we were supposed to get this the first time around and just didn't but I have never been more grateful for paperwork in my life. It was the actual reports that they give to the doctors with all the terminology I'd been wanting! This was fantastic! Even though I may not understand everything in the report, at least now I have it in writing and can look things up rather than try to remember what the surgeon said in layman's terms after coming out of a stressful situation. But an hour and 30 million pidgey's and ratata's later, our nurse came to get us for the physical.
The exam was a little bit slower than usual but that was because our doctor had a medical student with him who was getting to practice on some patients. It was kind of cool to watch that whole process and helped me to learn some new things too. I feel like I need to pick up an anatomy and physiology textbook... and maybe do more research into echocardiograms... just for curiosities sake. It fascinates me. I'd be a terrible nurse or doctor but I'm endlessly curious about, well pretty much everything. Maybe I'll bug Devon to borrow one of his textbooks when he gets back to Winnipeg...
The exam was a little bit slower than usual but that was because our doctor had a medical student with him who was getting to practice on some patients. It was kind of cool to watch that whole process and helped me to learn some new things too. I feel like I need to pick up an anatomy and physiology textbook... and maybe do more research into echocardiograms... just for curiosities sake. It fascinates me. I'd be a terrible nurse or doctor but I'm endlessly curious about, well pretty much everything. Maybe I'll bug Devon to borrow one of his textbooks when he gets back to Winnipeg...
But with that, we got the final approval and we were DISCHARGED! I still can't believe it! Only 6 days after open heart surgery, one full week in the hospital, and we were cleared to leave! My heart is so full of gratitude right now I could burst! The prayers, the messages of support, even emails from complete strangers who had found my blog one way or another who wanted us to know how our experience had helped them even if it was just gave them someone to relate to, it has been incredible. The medical teams were outstanding, and the care we received was fantastic. The littlest gestures make a big difference. When we first got to the ward and our nurse offered us water... every little thing makes a difference.
To celebrate we headed back to the hotel so I could have a nap. lol. Then we got dressed up and headed out to Whyte Ave for sushi and then Menchies on 109 for frozen yogurt. It was just what we needed.
More updates to come but for now, we pack.