Heart of Beckett

UPDATE (6/4/2013)
Today was such an enjoyable day. Beckett has been so good, playing and chatting all day. Of course, when he gets tired and decides he has had enough he goes from zero to ten instantly, but he calms down pretty quickly once we settle him in to sleep. We are working hard to give him more interaction and stimulation throughout each day. One, because his head is getting flat and he needs to get out of bed, and two, because he is five months old and wants to play and be entertained. So we go through the bouncy, then the swing, then his tumble form chair, and today he used a play mat for the first time. PT had told my mom last week he needs to start having tummy time on a mat which will help strengthen his muscles, but almost always he absolutely hates being on his stomach. I can understand since this is something completely new (he has only done it about two times), and he doesn’t know what to do quite yet. It is hard to introduce something like that when he is so old and knows what he likes and doesn’t like, but we will keep trying. Even though he was on his back he did thoroughly enjoy the mat and playing with the toys that hang from it. It is so cute to watch him be so playful and entertained. And, I think it’s fun for the nurses to have a baby they can actually play with.
It was a pretty low-key day. Right now Beckett mainly plays and sleeps. We are somewhat on cruse control until the heart cath in a couple weeks and they decide what the next step is. Of course there are little changes here and there such as weaning the Vapo and optimizing some of his meds. Today the VapoTherm was weaned to 2.5 Liters of flow. We are getting so close to him being of it, with the goal to be Friday so he can have his MRV scan to check on his clots. If they are gone he will be able to move down to a very small dose of Lovenox (the blood thinner injection he gets twice a day in his leg). They will keep him on a small amount as long as he has his PICC line in because we don’t want any clots in it. They have also been letting him naturally outgrow his seizure medication since he hasn’t had any since way back the first week after surgery. It looks like they will be taking him off that completely on Monday. Yeah for one less medication!
So all good things to report. There is one funny story from today. Beckett finally had his first “I pooped everywhere” experience today. Luckily Jonny and I arrived after it happened so the nurse had it pretty much cleaned up as we walked in. It was pretty bad and his whole room stunk. Not only did he make a mess just by going, but also when the nurse turned her back to set his clothes aside he started kicking his feet through the dirty diaper and ended up with poop all over his socks. Of course he was wearing a white outfit. It was quite the mess and bound to happen sooner or later. I am just glad I didn’t have to take care of it. Beckett of course thought it was funny and smiled the whole time. What a little stinker.
Beckett is in a really good place, and as always we pray for more days of progress! God is bringing him closer each day, constantly healing him little by little. All praises to His name!

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