Sunday, January 10, 2016
Since I mentioned my brother-in-laws birthday a few days ago I have to start this post by mentioning my BFF and "sister from another mister"'s birthday is January 10th. Funny story, back when we were, I dunno, maybe in grade 11/12, I called her on January 8th, and profusely apologized for missing her birthday on the 6th. She paused... then said that January 6th isn't her birthday. "Oh... then Happy Birthday today!" - "It's not my birthday..." - "is it tomorrow?!" - "No, it's on the 10th!" - "I never called *click*". Now I never forget her birthday. lol. Plus it helps that 10 is her favourite number and I'm pretty sure if was her jersey number when she played soccer too.
Since I mentioned my brother-in-laws birthday a few days ago I have to start this post by mentioning my BFF and "sister from another mister"'s birthday is January 10th. Funny story, back when we were, I dunno, maybe in grade 11/12, I called her on January 8th, and profusely apologized for missing her birthday on the 6th. She paused... then said that January 6th isn't her birthday. "Oh... then Happy Birthday today!" - "It's not my birthday..." - "is it tomorrow?!" - "No, it's on the 10th!" - "I never called *click*". Now I never forget her birthday. lol. Plus it helps that 10 is her favourite number and I'm pretty sure if was her jersey number when she played soccer too.
It was another day of waiting and slow improvements for James. In rounds we found out that his hemoglobin and platelet counts were roughly the same as they had been the day before, maybe marginally up. He still is unable to pee on his own without lasix and still isn't pooping, but is getting progressively more gassy which is a sign of activity in his bowels. Though he had been borderline clinically necro, radiology had negated that diagnosis. But my poor little peanut wasn't sleeping at night. Between the pain he's in and the hunger he's feeling (he STILL hasn't eaten), he's been very fussy at night. We've discovered that he HATES a wet diaper, but hates being changed almost just as much! And yet he calms right down when Chris and I are at his bedside, and especially when we're holding him. You can literally see his entire body relax when you put him in our arms.
In exciting news James made a BIG step forward today! While he had been draining about 70-80ml of chyle fluid every 24hours (which compared to some of the other baby's we met in PCICU is low), the past 24 hours he'd only drained 11ml! This was huge! After they double checked his chest cavity by X-ray to make sure the tube just wasn't draining properly, they approved him to have his tube removed! He earned a "Wow Moment" bead for this one. And if things went well over the next 24hours and his chest X-ray on Monday morning went well they would give him a small test feed of breastmilk through the NG tube (nasogastric intubation - a small tube that passes through the nose into the stomach for direct feeding and aspiration of stomach contents - removal of stomach secretions or air in his tummy). Things are looking up for our little guy in terms of recovery and we couldn't be happier! He did still have an echocardiogram booked for Monday to let us know if he would require another surgery to repair the third VSD and possibly the tricuspid valve regurgitation, but things were going well.
In exciting news James made a BIG step forward today! While he had been draining about 70-80ml of chyle fluid every 24hours (which compared to some of the other baby's we met in PCICU is low), the past 24 hours he'd only drained 11ml! This was huge! After they double checked his chest cavity by X-ray to make sure the tube just wasn't draining properly, they approved him to have his tube removed! He earned a "Wow Moment" bead for this one. And if things went well over the next 24hours and his chest X-ray on Monday morning went well they would give him a small test feed of breastmilk through the NG tube (nasogastric intubation - a small tube that passes through the nose into the stomach for direct feeding and aspiration of stomach contents - removal of stomach secretions or air in his tummy). Things are looking up for our little guy in terms of recovery and we couldn't be happier! He did still have an echocardiogram booked for Monday to let us know if he would require another surgery to repair the third VSD and possibly the tricuspid valve regurgitation, but things were going well.
Support in Unexpected Places
Back when we had first learned James' had been diagnosed with d-TGA I had joined a Facebook group for parents and patients with TGA. Honestly, it was too much for me at the time. I couldn't really handle it. It was too overwhelming. So I left the group because I didn't want to scare myself, seeing the posts and updates on my newsfeed everyday. But now that we're in the thick of things Chris suggested I rejoin the group and post my blog, just in case someone else going through this needed someone to relate to. So I did. I rejoined, and posted my blog. I couldn't believe how many people wrote to me to encourage me. Some even said they had already been following our journey via Instagram! But one mom in particular reached out to me with a message. She had been through this whole process at the Stollery a couple years ago, but her baby had many complications and ended up living here for a year! I can't even imagine... but it was really great to have someone message me to say " I know know what you're going through". And maybe when we get settled in at home I'll be able to meet her! Who knows!
New Friends and Good Food
My parents had stayed with some friends out here in Edmonton while they were here for the surgery. I hadn't met them myself, but they offered to take us out for dinner and we accepted. It was a nice opportunity to get away for a little while and talk about something other than hospital life and updates. Don't get me wrong, it's very therapeutic to tell others about what we're going through. It helps us to process it all. But it's also nice to talk about something else every once in a while. And luckily for us, Arthur and Laurie were excellent conversationalists and we had a great time with them. They took us to this place called Highlevel Diner just a few blocks away from the hospital. We had actually come across the restaurant last week when there was a long wait at the sugar bowl, but we weren't really sure what kind of fare they served and we kind of had our hearts set on the Sugar Bowl that night so we decided to just wait. Turns out Highlevel Diner had been featured on You Gotta Eat Here and was really good! We shared a Greek inspired appetizer platter, and our enters were delicious. Of course I had to have Root Beer with it. lol. It was a nice break.
When we got back to the hospital we spent a little more time snuggling our little peanut. But then when we went to put him back in his Giraffe Bed for bed he was NOT happy about it. Apparently he REALLY likes to be held. But Chris and I tag teamed it to calm him down and actually got him settled in only about 5 minutes. Between a diaper change, a tight swaddle, some containment, rocking, and a soother, we finally got him settled. We slowly and carefully took one hand off at a time until we were able to very quietly back away from the bed. It felt good and we were really hoping he'd be able to sleep well.
So things are looking up! I'm cautiously optimistic at the moment. We've had a few really good days in a row so I'm not sure whether this means the end is nearing, or if it means bad news is coming. There are still issues that will need to be followed up and dealt with as James grows, but at least we're almost done the first chapter of this crazy journey. We'll see what this week brings.
So things are looking up! I'm cautiously optimistic at the moment. We've had a few really good days in a row so I'm not sure whether this means the end is nearing, or if it means bad news is coming. There are still issues that will need to be followed up and dealt with as James grows, but at least we're almost done the first chapter of this crazy journey. We'll see what this week brings.