Happy Mothers Day to this amazing mother. You make these boys feel so loved and safe. We’re so thankful for you!
I apologize there was no update yesterday, but after suffering all day with a migraine, I went home and went to bed. Beckett too had a little rougher day. When I arrived he was wide awake and playing games with his nurse. Her first words to me were, “I think I see the real Beckett”.
We spent a couple hours playing potato head on the floor until around 11 when Beckett got hiccups, which unfortunately can be very painful. This led to about a 30 minute coughing fit, lots of crying, and eventually a dose of dilaudid. (They stopped his ibuprofen today, which had been working well for him, due to his renal labs) By 11:40 Beckett was asleep in my lap on the floor mat. We got him into bed and he slept for almost the next 6 hours.
In the evening, Beckett didn’t feel too much like playing so we rocked in the chair watching How to train your dragon. It wasn’t long until it was time for his nightly bath routine and then bed.
After what I can only hope was some much needed rest, today should be better. I am already at the hospital this morning and Beckett is currently sleeping very peacefully.
Beckett had a great day today. He spent the morning playing in the playroom with Jonny, myself, and my parents. He was even able to walk a significant amount while pushing a toy mower. He spent the evening playing on the floor with us, tickling and goofing around with Jonny and then playing “potato head” while watching Toy Story before bed. When I tried to take a picture he turned the potato heads around and told them to say cheese. He was so much more himself, and is gaining his strength back more each day.
They have been giving him high doses of diuretics for the last few days and today his kidney function labs had doubled. So they dialed his meds back and have been watching his urine output closely. They aren’t overly concerned, but want to prevent an acute kidney injury, so they will look at his labs again in the morning.
So the main road blocks to going home are the renal labs, making sure oral diuretics are working well rather than IV, and getting off the oxygen. Each day we see a little more of the sweet, fun-loving boy we know and are getting very close to taking him home. It is hard to believe it had only been eight days since his surgery. God has truly brought him this far, and we could not be more grateful!
Beckett had an overall great day today. Upon arrival this morning they thought Beckett was potentially being transferred out of the ICU. They have to be kidding right? Well they are still changing over some medications and ramped up his feedings today so they want to give it another day or two before he transfers. We were able to see the surgeon today and he said he was very pleased and Beckett was actually doing better than he expected. He had an echo to look at the surgical repair and things look great!
He was awake most of the day except for nap time which is so good. He spends most of his time watching movies, which will be a rude awaking once returning home. 🙂 We were able to play a lot and he was laughing and giggling just like he always does.
This evening, however, was a little rough. He had a pretty big meltdown during his nightly dressing changed. Once he was medicated they let my mom and I hold him to help settle him down. While he did eventually stop crying and doze off a little, he still seemed uncomfortable. We washed his hair in the chair while being held and when we moved him back to the bed, meltdown number two began. Sadly when asked where he hurt he pointed directly to where his chest tubes and right atrium line enter his chest. He required a dose of Dilaudid to settle down and we were finally able to finish his bath. We got him all freshened up and tucked into bed and within seconds of turning out the lights he was asleep.
Jonny went home today in ordered to put in a couple days work so my mom is here with me. Thank heavens, because Beckett likes to choose her over me. This is also a very good sign because it means Beckett is doing well enough that Jonny felt comfortable to leave. So please pray that he will not struggle being away.
I just want to say thanks again for all the support we are receiving. We couldn’t do it without you!
Whelp…..it finally happened. Roughly 20 minutes ago we said “bye” to our son again (or, more accurately, “see-ya-soon!”). You’d think this would get easier over time, but I assure you it seems to get more difficult. The only thing that is easy is knowing the environment, the emotions are heightened each time.
Anyway, with all that said, they were going to be taking Beckett back around 9:00am, but it didn’t happen until around 10:50am. I’d be lying if I said that each minute after 9:00am a little more doubt was creeping in that this was even going to happen. However, it began to pick up steam around 10:00am, and eventually we began walking him down in this little red wagon. As we began to hand him off Beckett said, “Daddy coming?” Which didn’t help me contain my composure in front of the whole O.R. team. They wheeled him away and Leah softly said, “I thought I was ready for that.” 😕
Sooo….here we sit in the waiting room for the next 6-8 hours trying to occupy our brains with books, movies, games…whatever needed. There’s no turning back now.