So I know I was going to tell you all the things that were messed up yesterday but if I do that then I won't get to the update. On that note--here's the update.
Last night was very difficult and frustrating. She was running a fever most of the night and struggling to get any decent breaths. She did sleep finally and that helped enormously. This morning she was unwilling to get up and was very sore so we just took it slow all the way around. By noon she was drinking apple juice and was able to sit up on her own. We then set out to walk about 2 minutes down the hall and oh boy that was fun. She was so sore and unsteady that it was upsetting to see her even try. She did try, and she did make it, and she was okay.
The rest of the day was a lot of the same, tears, smiles, sitting up, sitting down, etc. By 5 p.m. she was able to eat some apple sauce and then she worked up to some mashed potatoes and that was enough for her. Tomorrow it sounds like we are going to try and start a feed through her new tube and see how it goes. I know the cleaning of it and rotation of it 2x today was torture. This had been by far the most painful thing she's ever had done. Yes, worse then her lung biopsy and chest tube.
Moving on though. The fevers have been waxing and waning today and we are in the waxing part right now. Yesterday was a lot of the high respiratory rate as well as the high heart rate, well tonight it is the opposite. Both those rates, RR & HR are scary low tonight. They've already called the doctor and there's really nothing we can do about it at this point besides keep a close eye on her. She is sleeping, soundly at that, so that's good news.
I don't know what tomorrow will bring, going home? Staying? Feeding? It all depends on if they think she can be managed at home I suppose. It's something that brings me no joy, no sense of security, that we are to the point that her set of kooky medical things are things that are okay to go home with. Things that no other "typical" child would be allowed to go home dealing with are things that we must. I know it's late, and I know that I should be in bed instead of typing this and having yet again another weak moment but it just is. It just really sucks.
Tomorrow will be better than today and tomorrow will also mean she's another day healed.
2 comments:
Oh Jess,
the first thing I want to do is fold you in a huge warm hug. I have no words, only deep emotions that maybe come close to yours but I have my grandson just her age and I imagine how I would feel if it were him and the emotion is so strong it almost feels like drowning.
Know many of us all over the world have candles lit, send prayers and healing energy to Alana, to all of you during this "yet another" difficult time. I send my love, my light, and everything I can to help her get back home with her family, tube and all. I know this decision was so hard, just hold tight...today will be a bit better, then the next day....kiss her for me? Love Debs (Sage)
I'm sorry its been a rough recovery. I hope today she has shown some improvement- it really is wearying to have a child with no diagnosis. I truly understand and I know how tired you feel after hearing the drs come back with the same lack of explanation time and again. :( We never talk about Eithene being "well" or "better" anymore- we just talk about when her care is stable enough to transfer to home. Hugs hun. Its an adjustment for sure.
Jessica
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