We have passed 3 weeks since surgery. The road to recovery has been long and slow. We are grateful that Lyla's heart function is good. But her lungs and chest tube have been a bit frustrating. It seems like every time her lungs kind of clear up, they fill back up again. She is on several different respiratory treatments (at least 3) that are helping but not making huge outcomes. They have been able to bring the high flow down to 6L. But I think because of her lungs, her breaths seem to pull in her stomach right at the bottom of her sternum. (As opposed to stomach going up and down) this means she is working harder to breathe. The extra air coming through her mouth from the high flow, is not as gusty, but she is constantly moving her tongue and making bubbles and/or foaming around her mouth. I think that would drive me crazy! The treatments today have been pretty successful in getting some clear breath sounds. Hopefully it stays that way! There was some blood in the secreations after being suctioned. and after Lyla's second treatment while I was there (treatments are every 4hours) Lyla got super upset and blood clots came up from her gtube (tummy). Not sure why yet. Her voice is still gone but you can see her trying to scream. It's heartbreaking.
She is losing a ton of important things, like proteins and vitamins, from her chest tube drainage. The output has lessened, but it's still too much. It should have stopped two weeks ago. And because of this drainage continuing, she has not gotten any milk in the last 2 weeks. And that just Sucks.
She also seems really unsettled. She's not as squirmy as she usually is when feeling unsettled/uncomfortable, but she is awake for really long periods of time. Anywhere between 2-6 hours! Something has to be bugging her. It's likely some of it is because of withdrawal, but I really don't know what else...maybe because she's hungry? I just want her to sleep and not be awake in this hospital for very long. It was very frustrating today. I can see her eyes so sleepy. And she's yawning (which apparently is something they measure as a sign of withdrawal). It was almost like she was trying to keep her eyes open, and not fall asleep. It just makes me so sad. I don't want her to be there anymore, getting bugged by the nurses, alarms dinging, people loud in the hallways, respiratory therapists, X-rays, high flow blowing so fast... Just want things to be normal, and it's just not going to be that way.
Since Lyla was born she never was able to really focus on an object. Her eyes move constantly. Lately they've been moving faster and more consistently faster. We aren't scheduled to see the opthamologist until May and that is just too far away. So Cheryl mentioned something to the attending and hopefully opthamology can come sometime next week and check her out. On the list of things to worry about with Lyla I suppose this is pretty low, but I'm concerned and I really want to know what's going on. I also worry that her moving her eyes back and forth so fast could be giving her a headache or making her feel sick. Because I think that's how I would feel.
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