Heart of Beckett

UPDATE (4/26/13)

So, to begin, last night did not pan out quite as well as we would have hoped. Shortly after I posted the brief update, Beckett began to whimper….yes, just whimper. However, something seemed off this time. Leah had just left for home, and I couldn’t help but recall just how good he has been for her over the past few days…reports of him just smiling and even giggling a little. Well, this wasn’t the Beckett laying in front of me at the moment, and I had to resist the temptation that it was his change of scenery….me. 😉 …though that’s certainly probable. But on a more serious note, he just didn’t seem right and the deja vu of the situation was hard to ignore. If you recall, this is kind of how the debacle from last Friday began. I cannot remember if I explained that particular detail in last Friday’s update, but the night before last Friday, Beckett seemed a little off. Similar to last Thursday, this Thursday was the last dose of Beckett’s heart med (milrinone) again, as they have been trying anything they can think of to successfully wean him off of it. Milrinone is an IV med, and they really want to get him on an oral med for many different reasons…one reason is that we can actually take him home on an oral heart med, but not IV! So I mentioned something to the nurse, and then the doctors rounded by Beckett’s room and asked, “How’s it going in here?” I couldn’t help but take that as “my opportunity”. The challenge was explaining that I felt something was “off” with the assumption mainly stemming from a whimper. Yeah, good luck explaining that to a bunch of doctors, huh? Well, somehow I guided my way through that conversation and got them to take a blood gas of Beckett’s levels. Sure enough, his lactate was high…abnormally high. Now, it wasn’t necessarily so high to spark an emergency, but enough so that they wanted to do a few other tests. After consulting with cardiology, the unfortunate decision was made last night to restart the milrinone.

I’m being told that after all that confusion from last night got ironed out, Beckett had an ok night. Unfortunately today has been cumbersome. Beckett will suddenly start to whimper, then he’ll smile, then he’ll cry, then I’ll bounce him, then he’ll fall back asleep, then I’ll sit down and get my laptop out to try to get some work down…and it would nearly immediately start all over again. When Beckett whimpers it breaks my heart…and there is very little I can do about it. In these moments I feel so helpless…and as a prideful man/father, I feel so useless, which doesn’t sit very well with me. And even more troubling, currently nobody really knows why he’s acting like this. They did a few blood gases today and they look much better than last nights. I then requested an X-Ray, and that looked pretty good too. They then did an Echo (2 Echos actually, she had to come right back up to get a few more images per the doctor’s request), and that turned out to be just fine as well (well, “Beckett fine”). Another theory is that its just him being grouchy and/or simply having a bad day…in which he has certainly deserved/earned every once in a while…right? Lastly, there is a possible theory of withdrawal. I proposed this idea earlier today and it seemed to get slightly shrugged aside until a well respected Neonatologist proposed the same idea earlier this evening…..now it’s a viable option. I guess it truly doesn’t matter how, what or who diagnoses the issues, as long as it’s being addressed.

Today was a challenging day…..again. When I’m not getting any work done, it’s because Beckett isn’t doing well. When Beckett isn’t doing well, I’m getting all the more stressed about not getting any work done. My priority is Beckett. Schooling is an after-thought to his wellbeing. However, if he’s doing well, I feel liberated to work. I’m either extra happy about my circumstances or extra stressed about my circumstances. It also breaks my heart that he seems to struggle on the days that I’m here by myself. And it doesn’t really comfort Leah too much because it seems that the days she leaves are the days he struggles. That doesn’t really inspire her to want to go to work. :-\

Well, there’s not much more to say. Please pray for wisdom for the doctors as we advocate for his care in conjunction with their skill and expertise. And as always, we appreciate all thoughts and prayers for Beckett as he continues to fight for his life. We ask for complete healing in Jesus’ Name!

#ODAAT
#GoBeckett!

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.