Sooo…..Beckett had a good night. In fact, when I got to his room he was on just a nasal cannula, rather than his VapoTherm! Wow, that was awesome! They had also taken out his IV from his head, which just made me smile.
However, we had a fairly eventful morning. As I walked up to his room (in typical Beckett fashion) Beckett began to cry, yet somehow maintaining a low heart rate in the 90s and 80s (which is not like him). He was sweaty and cold at the same time. It wasn’t something to necessarily freak out about quite yet, but they decided to restart some of his meds and run a bunch of tests.
I stepped out for a moment to update Leah (always nervous to make those calls while she is at work to hopefully appropriately inform her while not freak her out). I text a few family and friends with an update, but walked straight back to his room. There were even more doctors around his room now…which is never a good sign. The Cardiologist was just standing at Beckett’s door watching him closely. They drew a blood gas to monitor some of his “levels” and noticed that a few were off. After the Cardiologist gave specific instructions to the nurses he turned and told me and said that he’s continuing to learn and understand Beckett. He said that he thinks Beckett fooled him (which we know is often the case). Beckett was responding so well to the weaning of his milrinone (IV Heart Med), that he may have weaned him off of it a little too quick and/or didn’t offset the wean correctly enough with captopril (the Oral Heart Med). He said he learned a valuable lesson to go a little slower with Beckett going forward. Though I’m glad they are finally/truly learning this lesson over here at Riley, I can’t help but wish it could have been learned another way. We tried to warn them, but to their defense, Beckett is a little trickster. I guess the proper perspective is to be thankful that this appears to be back under control. They are thinking that he just got out of balance a lil, but they are hopefully back on track now once again. (….it’s just always so intense when there are tons of doctors and nurses all around his room :-\) One of the last things the Cardiologist said before he walked away was that they may need to reintubate him once again for a few days to help him get over this hump. Thankfully that was not the case. Though Beckett has been breathing a little fast today, he looks much better tonight than he was this morning. Unfortunately they put the IV back in his head for some of the meds they restarted today (sooo, no new picture for now :-\).
Leah is back again from work. We had a horrible communication issue today. I had been texting her all throughout the day with updates, and apparently she wasn’t receiving any of them. She then jumped to conclusions that things were so bad today that I didn’t even have time to text her. I just assumed she wasn’t texting me back because my updates were so sufficient and I assumed she may be too busy to actually respond (I mean, she does work in an ER). I eventually called her simply out of curiosity as to why she hasn’t been responding and to give her a verbal update, and I guess she had to walk out of a room from a doctor saying “My son is in the hospital, I have to take this call”. Apparently he wasn’t very familiar with our situation….sooo, oops. To make it worse, I guess this lack of communication drew Leah to tears multiple times today. This just breaks my heart. These “little things” in addition to Beckett’s day only magnified our stress. Today was supposed to be a make-up day for me with my schooling…and that didn’t really happen. Beckett and my family are my priority, but my schooling responsibilities are relentlessly looming and hardly feel like an opportunity right now (though I wish I could assume that perspective). I just want to finish strong and properly prioritize my responsibilities…whatever that actually looks like.
Soooo, lets just continue to praise God for his faithfulness (even in these hard times), and pray for continual healing.
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
I am glad to here things were figured out with Beckett and you did resolve the texting issues.
Praying for LESS stress and elastics on your minutes.
Oh my bless your hearts…what a roller coaster ride of emotions – and bless your hearts even more for your continued faithfulness to our sovereign Lord through it all…wow! that phrase just reminded there is a wonderful old song with that title. Bebe Winans has a beautiful version on You Tube. The chorus says “Through it all, through it all, I’ve learned to trust in Jesus, I’ve learned to trust in God. Through it all…I’ve learned to depend on His Word…“ And it is so obvious that you and Leah are doing just that. I thank God for your testimony. Praying fervently for Beckett and your family. Keep hanging in there!
Just want you to know you’re in my thoughts and prayers. Also want you to know Ball Memorial has caught Beckett fever too. I check to see how he is doing when I’m at work and EVERYONE comments on how cute he is.