But I’m not overlooking the fact that we are one week down!
I got to go home on Saturday! It was so great to see the kids and sleep in my own bed. WE try and cherish every moment together but I also had to go grocery shopping to stock up for the week, run errands for pet food, run to redbox, do laundry.. etc.
It’s just temporary…
Frustrations here at hosptal. The hospital staff changes on the weekend. We were in such a good groove. She was kicking butt and then the weekend hit. she did ok, but I don’t think the feeder did as good as job as the FT staff. SHe was down to 17.4 kilos this morning. Which doesn’t seem like much of a loss compared to 17.7 on Fri but like i said, it is all about the numbers.
Gabi continues to cry and begs me not to go into the feedings. “I’m not hungry.” “I don’t want to eat.” “don’t make me go.” It’s hard but I can handle that behavior because she’s fine after a few minutes with the therapists. But today at her scheduled snack time, for the first time, she refused to eat. She wouldn’t open her mouth for Ms. Sheila. And the fits before the feedings and the therapies are getting worse. She is testing me and testing the therapists. I’m sure she is sick of being here, sick of the food, sick of the work. It’s a fine line for me. A fine line to cross between comforting her enough but also not enabling this behavior.
And I’m struggling. She refused to eat in her dinner feeding also. And now she has lost about 400 calories. And it’s all about the numbers. I measure her urine output and monitor her poop schedule too. I tried to talk with the psychologist to see how what I am supposed to do. But of course, the psychologist already left for the day. Ms. Sheila, her feeding tech, told me this is totally normal. But I don’t want anything to slow down her progress! And I feel like a caged animal in a prison system. Sounds like an exaggeration but I shouldn’t have to request to meet with a member of the team and then have them not be here!
This is all getting very complicated and I just need clarification. It’s not just about her eating, it’s about the behavior and it’s about her extensive medical history. Today in speech, the therapist noticed some crackling in her lungs and heavier breathing. She wanted to get another swallow study last week but then decided not to.
But today a swallow study was ordered.
We head to the main hospital tomorrow to check for signs of aspiration. If she is aspirating, that changes everything. But I do not think she is. Her last swallow study was 4 years ago and there were no signs of aspiration. The results just showed a paralyzed vocal chord. I know 4 years is a long time but I think we would have seen some signs if there is fluid going into her lungs. But it will be good to know for sure.
She is eating a lot of blended foods… including a delicious blended beef stew, blended ravioli, blended mac n cheese, yogurt and still whole milk mixed with Carnation Instant Breakfast. She is doing well with those. But I guess I’m just overwhelmed and confused with what the overall goal is. I am happy with what she has already accomplished which is getting off the nightime pump feeds. But what now? I could head home now and feel like this has been a great success but we still have 3 weeks. I hope to get some answers tomorrow.
The kids were off school and it was hard not spending time with them especially on this beautiful Texas day. Gabi and I did get to get out in the courtyard and soak in some sun and we went for a walk around the block so we are getting out.
Like I said, pity party.
There were a lot of siblings here on this MLK holiday, so the playroom was hopping. But it made me miss my family even more. They weren’t able to come today.
There is a mother here that also has 5 children. She is here with her youngest child, a boy at 10.5 months. They thought he just had some sensory issues and eating issues. He has an ng tube and got here the same day we did. A week ago today. He was literally just diagnosed with autisim this afternoon. She is devastated. She doesn’t know what her son’s future will be, or what her future will be. I could offer nothing to her but a listening ear. We talked about our faith and I know she will be ok.
Everyone has something they are struggling with.
Thanks for reading. Thanks for the prayers, the texts, the emails, the gifts, the dinners, the babysitting, the friendship and the Novenas.
Much Much Love,