August 20, 2013

UPDATE (8/20/13)

Beckett has had a very busy day. Beckett was an add on today for his G-tube conversion, so Jonny and I were planning to be there earlier than normal to be safe. Well, I got a call before 8:30 this morning for consent because they were taking Beckett down already. Yeah, we didn’t think he would be that early since he wasn’t actually on the schedule. Turns out there was a cancellation and Beckett’s procedure was finished before we even got there. It went really well, and Beckett behaved like such a good boy. We were told they would probably need an IV to give him sedation, which meant putting one in today, but they gave him some medicine through his g-tube and that was all he needed. He literally played almost the whole way through. Not needing to have and IV put in was a huge plus! However, the conversion didn’t end up exactly how we thought. We were expecting a GJ-tube so he could be fed into his intestine, but still get meds in his stomach. This would also allow us to slowly try introducing foods back into his stomach once he was ready but still have a tube in his intestine should we need it. Long story short, that is not what Beckett ended up getting. He got just a J-tube. So now he has a tube going just into his jejunum without a port into his stomach. We were informed they tried to put the other one in, and it was simply too big. They didn’t want to run the risk of forcing it and potentially perforating his bowel, something the cardiologist said might be the very thing to send him over the edge where he might not recover. So, they went the safe route with the smaller j-tube, which we definitely appreciate. When Beckett gets bigger, and we are ready to try putting food back in his stomach, we will simply come back and they can exchange the tube for a GJ. Beckett has spit up some stomach acid today, but it is nothing compared to the volume of milk he was throwing up before. Beckett also had an Echo today, but we are still waiting for the results. We continue to trust that no news is good news. Of course we always look forward to hearing that his heart function is still doing well, and we believe they will tell us nothing less.

We spent lots of time loving on Beckett and then Jonny had to head home to do some things for school. Jonny leaving afforded me lots of snuggle time with my son. I can never get enough of just holding and rocking him. We also went for a wagon ride around the unit and Beckett absolutely loved it. He just looked all around and was perfectly content. We put him in the bumbo and the exersaucer because we are trying to do as much therapy as we can. He seems to enjoy it for a little bit, but he of course gets tired. He is getting stronger every day, so we continue to work on it.

Finally, it is official…Beckett is getting his first tooth! We could totally see it about to come through tonight. I can’t believe he is old enough to be getting a tooth. Although sometimes the last eight months have seemed like forever, it is times like this it seems as though it is flying by. I will try to get a picture and share it as soon as it comes through. Until then, pray that Beckett has minimal discomfort, as his belly is also probably sore from the procedure. We just never want him to be in pain, even if it is something as simple as a tooth.

I also want to share just how good our God is. Our little friend Henry, whom we met when we had just arrived at Peyton Manning Children’s Hospital, has taken his last big step in his fight against leukemia! He officially has gotten his trach out! What a huge answer to pray. He just has to spend a night or so in the hospital to be watched, but seriously, this is incredible. I can remember days of talking with his mom Kim, and honestly, she only had her faith to cling to because it was unsure if Henry would ever recover. Now, today, he has made a complete recovery! God is so faithful!! May our boys forever bring praise to his name!

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

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