Not really sure where to start, but I won’t string you along. So I guess I must begin by saying, “It’s been a very crappy day”. Sorry if that’s a very childish way to put it, but that’s just how I’m feeling right now.Leah and I woke up early to head to the hospital so Leah could spend a little bit of time with Beckett before her 2 hour commute back to work. It was a very emotional morning for the both of us, and especially hard to watch Leah drive away from the hospital.
I promised Leah that I would keep her up-to-date the best I can all throughout the day. So I began to text her updates as things would happen. What I wasn’t aware of was all that was about to happen. But before I begin, in my mind (right now) it doesn’t seem like a lot happened, but I can assure you, it was an exhausting day.
Beckett’s oxygen support level has been alarmingly high for the past 24 hours (or longer). We were hoping it would be lower when we came in this morning, but it wasn’t. I think he was at 50% support when the day began (we technically want something in the twenties…21 to be ideal). As the day progressed, Dr. Leys (one of Beckett’s surgeons), checked on Beckett about mid morning and said that his stomach looks good. They were talking about possibly starting some feeding into his G-Tube today (we didn’t really get that far).
Next, he is now getting IV Lasix, Versed Drip, and they turned down his fentanyl drip. Suddenly he dropped his actual oxygen level to the 50s (this is HIS actual oxygen levels, and we NEED them to be between 70-85 or so). That was scary, but unfortunately something I’ve seen before. So here I go, trying to figure out a way to inform Leah of this without freaking her out being 2 hours away….that got tricky.
They decided to check him for infection today (just to be safe), but we won’t hear back from that for a couple days. Then they decided to do another blood gas to try to figure out why he needs so much respiratory support. So, that’s an easy update to relay to Leah….no big deal.
Then he began “throwing” some funky heart beats. They didn’t seem overly concerned, but they are watching it. They just kept reminding me that the Cardiologist is coming in to talk with me soon.
Then our friend (who’s 3 year old son had the same condition as Beckett) we met here visited. This was a pleasant surprise, and a nice break from me somehow trying to do research for Chapter 2 of my Thesis during all of this. We were just chatting in Beckett’s room when all of a sudden Beckett got what they call “a drink”. It’s when the condensation from the ventilator pours down Beckett’s tube into his lungs….it sounds as bad as it is. Beckett began to desat really bad (similar to the last few times I’ve commented on this in my posts, but this time it was worse). It got so bad Kim and I stepped out of the room and a doctor came running in. They had to “bag” him to help bring him back to normalcy. These are the moments where you can pretty much place two finger anywhere on me and “take my pulse”…I’m pounding from head-to-toe. The crazy thing is, once he recovers, he’s fine and usually sleeps really well. Next step…somehow explain this to Leah in a text…
They did multiple X-Rays today, along with another Echo. The Echo takes a good look at his heart and makes sure everything is looking “good”, or “acceptable”. The Cardiologist eventually came in and spoke pretty direct with me. She explained that things could be much worse and that we are not at that point, BUT things could certainly be going better. As in, she is “concerned” for him. She said it’s not impossible (at all!) for a baby with HLHS to recover from set-backs like this, but it is difficult. Those words are difficult to read, but the honesty was appreciated. Again, going to now attempt to inform Leah with an honest update, yet without freaking her out.
They did another blood gas and his Crit was low, so he needed a transfusion (more blood). They also decided to start him back up on milrinone (for more cardiac support). This is not a “bad” thing (because it helps him), yet it is definitely a step backwrds. …text Leah again.
They decided to put him back on Antibiotics (just to be safe). Then at around 4:00pm he all of a sudden needed oxygen support over 70% (that’s a ton!). I tried communicating this with Leah and it provoked a phone call from her. She was justifiably concerned (and so was I). At this point I’m definitely breaking down slowly. I was trying to be strong for her over the phone, but I think she could hear the fear in my voice.
To fast-forward a little, Leah eventually made it back and we had some quality time to cry a little in each others’ arms and just spend time at Beckett’s bedside.
I (oddly enough) ran across this great quote in one of the books I was annotating that I just had to share with Leah. If you are still reading this far, you need to read this. It is from the book “The Call” and it said:
“Does your faith see only what is in front of your nose, or is it also ‘sure of what we hope for and certain of what we do not see’? Does the here and now, the present and the accepted, form a prison cell for your thinking, or are you reaching for more than you have grasped? Has your vision suffered from leakage since you were young, or are you still paying its price and closing it’s gap with reality? Listen to Jesus of Nazareth; answer his call.”
Shortly after that Beckett dropped his oxygen to the low 60s (after a few hours of doing really well). I looked at Leah and touched my nose in reference to the quote above. She understood and just nodded her head.
They literally just decided to also put him back on dopamine to help the contractility of his heart. Most of these meds we said goodbye to back in the PICU only to see him needing them again.
This is how our night has ended, and though we are both worn out, we are choosing to trust in God! This is not easy, and I’m certain we will close the gap of faith with reality at times…but Beckett is worth it, and we believe he CAN come back from this!
#GoBeckett!
#ODAAT
Heart of Beckett 
