Jack had his post-op check up this morning. When I told him we were going to the hospital he got upset, told me he didn't want any pokes and tried to talk me into going to the hospital with the fish tank that changes colors (Riverton) instead. I reassured him that we would come back home in a few hours and we were not having a sleepover this time.
The good news: His xray looked nice and clear and his incision is healing nicely. He finally got to enjoy a nice bath tonight rather than the shallow splash that I've been letting him have trying to keep his chest dry.
The less good news: His sats on o2 were 92, but when we took him off he was hovering around 84. That may not seem like a big difference, but with the way his anatomy is working now, sats below 90 mean there is too much pressure in his lungs and therefore too much blue blood is passing through the fenestration (hole) back into his heart. The result is that he is still on oxygen. They said he can be off when we go out or if we are playing outside, so that will make it easier, but when we're home and at night he needs to have it on. As soon as he can stay around 90 on room air we can discontinue the o2, so I think we'll be checking his sats a lot more often.
He was able to discontinue 1 of his medications which is good, but we had to do a blood draw to check to make sure it was ok. I'm usually a good tough momma when it comes to holding him down for chest tube removal and iv placement, but today this little blood draw made me pretty sad. He was so upset and terrified. It took me and 3 lab techs to hold him down. Among HLHS kids he has been a rock star and sailed through all his surgeries, but for a 3 year old kid, he's been through a lot. He's had more pokes, pains and medications than I've had in all my 33 years. We got done and he got to pick out a doughnut from the Rainbow Cafe, then fell asleep on the way home.
He's taking his medicine so much better now, and after a really rough day on Sunday, he is now doing better and better each day, both physically and emotionally. I hardly gave him any pain meds today. Overall, we're getting there. I just have to remind myself that it hasn't even been 2 weeks since his surgery and really it will just take time to fully heal.
Wednesday, May 16, 2012
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4 comments:
I've often wondered if at times you struggled with everyone refering to Jack as a rock star in the heart department---its almost like I would find it hard to complain about seeing him go through all he does. But you are right, despite how he has done compared to other HLHS kids he has been through way too much. Hang in there with the O2--its a pain, but helps them recover.
Deanna
Yay for being down one med, but boo for keeping the O's. Hopefully some extended time on his oxygen will help to lower those pulmonary pressures as his body adjusts and keep Jack from having do deal with any potential effusions. Hang in there. Hopefully he will continue to relax and feel a little better with each passing day and you will have him back to normal with plenty of time to get out and enjoy summer. Thanks for the update!
I'm so glad your updating your blog! And also so glad that I never had to learn about all of this stuff you talk about! You are a tough mom with a tough kiddo and I think you're pretty great. If I can help with anything, please let me know :)
poor guy!but glad he is doing well. that is alot to have to go through, for him and you :)
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