Heart of Beckett

UPDATE (5/10/13)

This morning began with me approaching Beckett’s room to see his overhead lights turned on full blast and nearly 20 people gathering in front. This is rarely a good thing in the ICU world, however I was affirmed that the Neonatology physicians and the Cardiology teams happened to converge and “round” at Beckett’s room at the same time (#Coincidence). A case was made that they would like to wean Beckett’s fentanyl again today another .25. The rationale was that Beckett’s primary physicians were here all day today, in which I had to politely remind them that if we see any signs of withdrawal it will most likely not be today, but tomorrow and Sunday when Beckett’s primaries won’t be here. However, we decided to proceed with the wean and an understanding to not wean anything this entire weekend, but simply reevaluate everything once again on Monday. They did decide to increase his methadone to help offset his fentanyl wean. That definitely helped me feel a little bit more comfortable weaning him again today…but we’ll see how this weekend will play out now. :-\ If you’ve been keeping track, you’ll note that Beckett is now down to .75 of fentanyl…we want 0. 😉

He has also been up on his FIO2 today (which is his oxygen support we’ve been talking about). It actually got as high as 70 today….that’s not good. This has been a constant hangnail throughout the last 2-3 weeks, and something that has kinda confused all the doctors. His support is high, but not scary high. However, his level of oxygen support is on the brink of “scary high”. This is why Leah and I get so nervous about weaning his fentanyl…we’ve seen this before. His oxygen support will slowly rise, everybody will say “they are watching it”, and before you know it he’s getting reintubated. We are truly on the same team as the doctors in that we surely hope that is not the case and he’ll be just fine, but we are nervous he might be getting underestimated once again.

His crit was low(ish) again today, so they just got done transfusing him again. Beckett has always responded well to blood transfusions, so we hope that is yet the case once again.

I failed to mention yesterday that his scalp IV was removed that other terrible day earlier this week and was replaced by a specific PICC line called dual lumen (or IR) PICC line. This is significant because I can rub his head once again. I always loved doing that because of how much you could tell he loves it. So, as “Barbie girl play-time” as this sounds, I brushed his hair this evening, and it was quite nice. You could just see in his eyes how much he enjoyed it, and it’s definitely nice to be able to do something tangible to him that he so evidently enjoys.

He also did “tummy-time” again today (I’m amazing at all these new words and phrases I’m learning, it’s quite humorous to me). He hasn’t really enjoyed sleeping on his stomach much over the past month or so, but the nurse today must have had the magic touch. He slept for a while, and nearly high-satted the entire time.

Lastly, we had some surprise visitors again today. Brenda, one of Beckett’s previous Respiratory Therapists from St. V’s showed up today and couldn’t help but comment on how big and good Beckett is looking. He’s starting to get a nice double-chin like his Dad. It was great to see her again. Then another friend of my family (from my hometown), Sheri Brodbeck, stopped by and said she had to see this popular baby in person. It was certainly a pleasant surprise, and fun to show Beckett off to her as he just starred right at her the entire time all wide-eyed with those big brown eyes. It was funny.

Whelp, that’s it. In summary, it was a fairly decent day. Yeah, he whimpered here-n-there, but all-n-all, we can count this as a “good day.” Bless you all, and a continual thanks for all the prayers and support. It’s astounding.

Also, please be praying for Leah’s coworker who has recently received news that her unborn baby may not survive. She has been a huge encouragement to Leah and prays for Beckett daily. The least we can do is pray for her, her family, and her unborn child. Miracles still happen, so let’s surround them with prayer.

#ODAAT
#GoBeckett

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.