Yesterday was quite hectic in Ned's little room. We had some issues with the air tube from the vapotherm again. Everytime I looked down, that tube was in two pieces and poor little Ned wasn't getting any support. I tried to hold him and the airway tube, but he had already gotten so worked up working so hard to breathe that he was moving way too much causing the nasal cannula to pop out of his nose which didn't help matters at all. I finally put him back in his bed and called the respiratory therapist to replace all the tubing. It turns out that the nasal cannula he was using didn't match the vapotherm tubing and that's why it kept popping off.....good to know! They had also been trying to wean him off the vapotherm yesterday, but with all of that going on and the weaning reductions going a bit fast in my opinion, he ended the day back up at 5 liters (he'll need to get down to 1 liter to transition to the regular oxygen/nasal cannula).
After we worked through all those respiratory issues yesterday, Ned had some vomiting problems last night. Around 8:00 he began acting really unsettled and uncomfortable. He was just jerking around in the bed, his heart rate and respiratory rate were on the rise and then he started retching and throwing up. It definitely wasn't spit up like I used used to with Jack. You know, that kind of comes out of nowhere. One minute you have this smiling happy baby and the next second, spit up is everywhere, but the baby seems to be totally unware that the event has occurred. This was more like an adult would wrecth down deep before being sick with a stomach virus. His little body would heave and heave and then just a little bit of milk or medicine or whatever would come out. They finally stopped his feeds for a couple hours to give him a rest. They were going to restart them at a reduced rate until this morning when they plan to lower his feeding tube past his stomach into the upper most part of his intestine. When I spoke with his nurse last night around 1:00, she said he had started acting very agitated and uncomfortable again, so she gave him an extra dose of ativan and he was resting fine after that. I am really praying that the lowering of the tube will help him today because it is terrible to watch a child his size hurt and struggle.
Ned's personality doesn't help me feel any better either. I am learning that Ned is a very serious child. He gives me this furrowed brow look all day whenever anything isn't going well. He doesn't really cry much at all, he looks more perplexed and concerned over his current condition. Even when he's feeling good and I try to play little games with him, he gives me that same look of complete disinterest? I even noticed yesterday that when he smiled in his sleep, he immediately caught himself and replaced the smile with a disconcerted frown. I, of course, found that extremely funny.....but he, of course, didn't.
On a kind of positive note, at the moment the PICU is full. If any emergencies come in, Ned will be transferred to the NICU. That is promising because that means he is the least sick child in the pediactric ICU at the moment. I'm just in such a routine and comfort zone there, I hate to have to leave. The vacancies may change at any minute and that plan may go out the door (sadly to say), so we're just taking it as it comes at the moment. They didn't call me last night, so I assume he'll still be in his same room when I get there this morning?
Hopefully, a speech therapist will be by today to start working with Ned on learning to suck and swallow- that would be a huge progressive step for him. The surgeons are wanting to postpone his final surgery until he is absorbing more of the food he is taking in. They made adjustments to the breast milk yesterday and believe this will help him. I don't think he output as much yesterday either so hopefully that problem may soon be corrected!
Our same issues still remain, breathing and eating. Please continue to pray that God will begin to allow Ned's body to function in the way in which it was designed. I have no fears that God can't or won't heal Ned's body, I know it will all be in His ordained timing. I believe that timing is for purpose and I'm just praying that I'll be able to seek and find His purpose in His plan. I don't want to leave this place in my life and feel like I missed any of what God had in store for me, but sometimes I get caught up in the medical here and I forget to look for God at work around me. Today I am praying for clarity, so I can discern God's call from life's distractions. I have to remember that I can't fix Ned, only God can, but He will use me for other good if I allow Him.
Much love and many blessings to you all!
Betsy, Travis, Jack & Ned