Friday, July 15, 2016
Thursday had been such a long day that there was nothing I wanted more than a good sleep. Chris took the first night on the ward with James so I was at the hotel by myself. But between the adrenaline and caffeine my mind was racing and I just couldn't settle down to sleep. I got maybe 4 hours before I just gave up and got ready for the day. I was feeling pretty sluggish so I took my time before heading over to the hospital. By the time I got there Chris was already up (unusual for 6:30am since he can sleep through pretty much anything and LOVES to sleep). He was in full dad mode - trying his best to make sure James was comfortable and distract him from the tubes and wires he so desperately wanted to rip out.
Thursday had been such a long day that there was nothing I wanted more than a good sleep. Chris took the first night on the ward with James so I was at the hotel by myself. But between the adrenaline and caffeine my mind was racing and I just couldn't settle down to sleep. I got maybe 4 hours before I just gave up and got ready for the day. I was feeling pretty sluggish so I took my time before heading over to the hospital. By the time I got there Chris was already up (unusual for 6:30am since he can sleep through pretty much anything and LOVES to sleep). He was in full dad mode - trying his best to make sure James was comfortable and distract him from the tubes and wires he so desperately wanted to rip out.
Apparently it had been a rough night. James had gotten up every 45 minutes in pain and was just not feeling very well. Being on the ward is so different than PCICU. In the ICU you have one nurse with your baby the whole time and a second nurse who floats between one or two other patients. Their attention to detail is so crazy it sometimes feels like they record every hiccup in his file. On the ward you have one nurse to every two or three patients and really they just come by if the monitor is beeping or for their 15 minute check-ins. If they feel like the parents are competent and capable they'll give you even more space, or come in to chat if they like you.
If we were well rested this wouldn't feel like such a herculean task, but with both Chris and I running on fumes the hours began to drag and any minor setback felt like we'd never leave. It's ridiculous to feel this way, I mean we've only been on the ward for 2 days, but we just didn't have the energy to think long term. Plus the wifi signal wasn't strong enough to support Netflix so that's no fun. lol.
In rounds the doctors gave us the game plan. As per usual there are three major boxes to check before discharge is possible.
#1: James' needs to be breathing unsupported on room air.
#2: James' must be eating all his meals Q3 orally from a bottle or nursing.
#3: James' must have his remaining two JP Tubes (thanks Rachel!) removed.
Box #1 had been checked. The nasal cannula was out and he was only needing a little bit of oxygen support about once a day for desats below 70. In good news his lips and tongue haven't turned blue at all in a couple days now! Even when he's mad!
#1: James' needs to be breathing unsupported on room air.
#2: James' must be eating all his meals Q3 orally from a bottle or nursing.
#3: James' must have his remaining two JP Tubes (thanks Rachel!) removed.
Box #1 had been checked. The nasal cannula was out and he was only needing a little bit of oxygen support about once a day for desats below 70. In good news his lips and tongue haven't turned blue at all in a couple days now! Even when he's mad!
Box #2 had a plan in place. Keep up his fluids to prevent dehydration via IV and nurse/bottle feed every 3 hours. He had eaten really well the day after surgery but hadn't really eaten since then. He still had a lot of extra weight on him from surgery, but the Lasix were helping to bring that back down. Overall he was looking less bloated and the firm distention in his belly was finally starting to go away. You could almost see his bellybutton again!
Box #3 was a matter of waiting. Both JP tubes were still draining about 12ml each every 12 hours and all we could really do was wait for it to stop so they could be removed.
Box #3 was a matter of waiting. Both JP tubes were still draining about 12ml each every 12 hours and all we could really do was wait for it to stop so they could be removed.
As for pain and medication, he continued on Tylenol and Advil around the clock and they decided to try him on a tiny dose of orally administered morphine around the clock as well. They were skeptical that a dose this small (2.5ml twice a day) would do anything but they decided to give it a try since he's so sensitive to it.
Our day continued rather uneventfully with visits from my parents friends Heather and Doug and Face Timing with my mom and dad - for the record James LOVES to FaceTime with grandma and grandpa Hart. He recognizes them right away and grabs for the phone! It's my go to option for when he's fussy and mum and dad just aren't cutting it any more.
Later that day a cardiac discharge nurse came in to give us some training and information just in case we happened to be discharged over the weekend. We went over the usual stuff like how we can't lift him from under the arms for 6 weeks, no baths for 1 week, look for red flags that may require another hospital visit, etc. But she also mentioned that depending on how soon after the JP tubes come out we're discharged we may need to stick around for another day or two and come back for a chest x-ray before going home. They need to allow 24-48 hours after the tubes come out to check for air or fluids around the lungs before he can get a "cleared to fly" notice.
That night it was my turn to stay with James. Honestly, I was so tired that as soon as he was settled and in bed, Chris went back to the hotel and I went to sleep. I had been fighting a crazy headache all day and could barely keep my eyes open at this point so I passed out fast and hard. Fortunately for me, James seemed to feel the same way since he slept like a champ.
Saturday, June 16, 2016
Morning rolled around and I was feeling good! I'd had a good sleep and while I was feeling pretty gross from spending the night in my clothes at the hospital, I was feeling refreshed. Chris joined me for rounds and got the updated plan and charted progress.
The doctor on call last night had decided to take him off of the IV fluids and switch him the NG feeding. That way he was getting the calories he needed even if he wasn't nursing. He was getting 80ml Q3 over an hour with nursing as a top up. It was great for over night because it allowed me to get some rest, but now that it was day it felt like he didn't want to nurse because his belly was already full from the NG feeding. So, after expressing this concerned, the doctors agreed to allow me to breast/bottle feed first and only if he refused to eat would they administer the NG feeding.
James' left JP tube seemed to have stopped draining entirely which was great, but was leaking at the incision, while his right JP tube was still draining quite a bit. Because they're rather uncomfortable to remove the doctors suggested leaving them both in another day and hopefully pull them both on Sunday rather than pull one today and one tomorrow.
For pain, the morphine dose seemed to be working wonderfully! He was happy and his pain seemed to be well managed. Plus he was super alert and starting to smile and babble a lot more! When his morphine doses are too high (high for him is still very low for a normal baby) he gets super stoned. So all the medication stayed the same and likely won't change until the JP chest tubes are taken out.
For pain, the morphine dose seemed to be working wonderfully! He was happy and his pain seemed to be well managed. Plus he was super alert and starting to smile and babble a lot more! When his morphine doses are too high (high for him is still very low for a normal baby) he gets super stoned. So all the medication stayed the same and likely won't change until the JP chest tubes are taken out.
But the most exciting news was that we were given permission to get him off the monitors and take him for a walk today! We were finally able to leave the room! It was magic. We explored a whole bunch of the hospital, took in some sunshine, and even took him to "The Beach". They have this great play area called "The Beach" where they have all kinds of toys, books, and activities for the kids to do. They have some really neat teaching toys too that help with learning about the hospital as well like stretchers, dolls in hospital gowns, and even an MRI machine! We had fun reading the Robert Munch book "Moose!"
James has ALMOST 2 out of 3 boxes checked. He ate really well all day, he just needs to keep it up over a full 24 hour period to allow him to "pass". They may even take out the NG tube tomorrow! Fingers crossed!
With all these positive moments coming our way, Chris and I decided to go celebrate by going on a nice date. We got all gussied up (yes, sometimes I have the vocabulary of an 80 year old) and headed down to Whyte Ave to find something nice for dinner. We were walking along and decided to try out a place called &27. It was... ugh... I can't even begin to tell you how good it was! Seriously though! All the dishes were right up my ally. You could go tapas style, build a charcuterie board, or have a traditional entrée. We shared a roasted cauliflower appetizer (which we later found out was ranked as 4th best dish in Edmonton according to some food critic ratings) and as my entrée I had pan seared Jamaican Jerk Mahi Mahi on arugula and quinoa with a hemp heart sauce and peach chutney... It was basically everything I would want to eat on one plate that wasn't chocolate, coffee or popcorn. UGH! And don't even get me started on the decor! It was my aesthetic to the T! I mean, the italian bulb lights, the gray stained wood floors, the dining tables made from slices of large oak trees, the exposed brick... everything! It was perfection. But then we got a call from the hospital. James was being fussy so we needed to come back. From the sounds of it he was mostly just hungry and refused to take a bottle from the nurse so we grabbed our bill and were off.
I don't know if there was just something in the air tonight or if this is normal for Whyte Ave but I want to never leave. It was the greatest walk of life. Seriously. So we were walking back to the hospital and were commenting to each other on all the amazingly executed fashion stereo-types we were passing. We have a goth scene in Winnipeg but from our experience they seem to have gotten suck in 90's grunge goth. The goth on Whyte Ave were so chic it blew my mind! Then we passed a Leonard Hoffsteader's doppleganger - green lantern shirt, glasses, hair cut, comic book and all! We passed probably 3 bachelorette parties too.
And then I hear this music... it was a guitar and it sounded like it was getting closer... I assumed it was just someone's car stereo... Nope, Chris looks back, pulls me over, and this guy with a gold bronze tan, no shirt, and dreadlocks rollerblades past us... playing guitar... and skating to the beat of his own song! He smiles, gives Chris a nod, then does this dancey little kick as he passes us. And just like that he was gone! I lost it! It was THE funniest thing I'd seen in a long time. How does that exist in real life! So for the next 5 blocks I'm just trying to keep it together because I'm laughing so hard. We finally get to the end of Whyte where we turn towards the University Hospital and nearly bump into a man fully dressed in voyageur attire! I mean a legit coon skin cap made from a real animal, fringed suede suit, and a period moustache! He smiled at us and was on his way. I didn't want to stop walking! This was the greatest walked I'd ever had! It was so unusual it could have been straight out of a movie. Is Edmonton always this awesome in the summer?!
When we got to the hospital our nurse told us she decided to give James a feed through the NG tube since he just didn't want to settle but that she made a note in his file that the only reason he'd had an NG feeding was because I wasn't available for that feeding. I had some pretty serious mama guilt after that but then let it go. One NG feeding isn't the end of the world and this date gave both Chris and I chance to finally sit down and talk to each other. It's been hard to do that lately since we haven't even been sleeping in the same building for a few nights now.
But overall things are going so well and we're amazed at how quickly he's recovering. Now we just wait for those tubes to stop draining and we'll get to come home. We can't say for certain but my guess is that we'll be flying home by Wednesday. Anything could happen, we're not home yet, but we're feeling pretty optimistic right now.