Heart of Beckett

UPDATE (4/29/13)

What a goofy day…but all-in-all, a good day.

Today began with me walking up to Beckett’s room seeing him being held by a women I had yet to meet…and she was singing to him. I thought, “that’s odd.” She immediately introduced herself and said that she is part of Music Therapy here at Riley. Well, that helped make a little more sense of the situation. She had a beautiful and peaceful voice and slowly put Beckett to sleep in her arms…it was pretty cool. At nearly the same time, the doctors walked by to “round”. They stopped at Beckett’s room and began their conversation. A few things stood out as they conversed such as Beckett’s crit being 39 (still) and further discussion about weaning his fentanyl. I politely interjected and shared that I was under the impression we were going to be talking to the pharmacists, Bill, about a weaning schedule. Immediately a hand was stuck out through the wall of doctors in which I then heard, “Hi, I’m Bill.” “Ahhhhh, Hi Bill.” (it was kinda awkward) So, I played it off and said, “Perfect…so Bill, what do you think the weaning schedule should be?” We all proceeded to discuss probable scenarios and agreed that Beckett should be weaned from the fentanyl .25 every-other-day. This, however, will have Beckett off the fentanyl in roughly 12 days! Woah! That would be awesome. However, at that point, we will then need to begin working on weaning him off the methadone, then the milrinone, etc… Please pray that this wean goes well and is completely successful, as this is a critical step in the overall healing process. Back to his crit level being at 39, I had to throw in my 2 cents there as well. We had noticed in the past when his crit (the oxygen carrying capacity in his blood) was on the lower end, and if it wouldn’t get treated immediately, it was pretty much already turning a direction it should not go. I explained how well Beckett responds to transfusions and advocated on his behalf to please watch that number closely. I slipped in a “he may need a transfusion today”, but didn’t want to push the issue (just picking my battles, right?). I later spoke with Cardiology, and they said they personally would prefer the crit to be above 40. Sooo, all this info got tucked into the back of my head until it seemed applicable later. I held and played with Beckett many time throughout the day today, but noticed that his oxygen levels were really goofy. When I first came in to his room this morning, his support was at 42 (we want 21). It has seems to consistently climb and climb over the past few days. I asked the nurse about it, and she affirmed me that they were watching it. At one point while Beckett was sleeping, the nurse turned Beckett’s oxygen down to 30 just to see how he would respond….and he responded just fine. He then woke up and began to tussle around in bed and his oxygen dropped (so his support had to come back up). Sooo, now he was back at around 40 again, but wouldn’t come up far enough on his actual oxygen saturation levels within the desired range. Sooo, the nurse kept turning him up, and up, and up. There was still hardly any change. It eventually got as high as 65 today, and yet, he was barely in the appropriate range we want him. I couldn’t help but inquire how unusual this is. We decided that we need to let the doctors know. They came and observed his current lower blood pressure (it wasn’t bad…just low), his abnormally high oxygen support, and yet how calm and normal he was looking and breathing….so she ordered a blood gas. His gas came back just fine, so the conclusion was made…he needs blood. The order got placed and he will be receiving it later this evening. We hope that by increasing the amount of blood in his body, more oxygen will/can be carried throughout…this, in theory, should/could help increase his stability to require less oxygen support and get that areas of his recovery back on track once again. I don’t know if any of that was easy to follow…but in essence, that was Beckett’s day.

I was made aware earlier this evening by my sister that a couple she knows from Fort Wayne are having their baby life-flighted down here to Riley. Coincidently, I overheard them clearing a space near Beckett’s room for a baby that’s coming down via life-flight from Fort Wayne. It may be them. I stalked their profile and found that they have had a pretty trying time since their little boy was born a week ago, and that this is a pretty scary transfer. Apparently, the doctors don’t really know what’s “wrong”…that’s why he’s being sent down here. The baby’s name is Kye, so please pray for him and his parents as we have and are experiencing many of the same feelings they are right now. I hope to only be a support and encouragement to them (if we even meet them) during these troubling times. Also, Leah and I tag-team once again this evening. She worked all day today, and I’ll be heading back home once she gets here later this evening. Please pray for safe travels and perseverance to “stay the course” and be the support we need for each other and certainly for Beckett. And please pray for Beckett. I ask for each of you to beg for complete healing; even if you don’t believe in a God, my God, any God…please pray and ask for the complete healing of Beckett’s little body. We are believing in a miracle, and have seen many thus far. #GoBeckett! #ODAAT

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