I dread this question. Well meaning people ask all the time, and I pause for a while unsure how to answer. How is she? Compared to what? Compared to a week ago when we were battling an respiratory thing? Compared to a couple of weeks ago when we were battling a stomach thing and dehydration? Compared to a couple of months ago when she had to fight so hard just to stay alive? Compared to your normal, average 9 month old? So, the answer I have settled on is “OK.” She is OK. She is my amazing, sweet, smiling, fighting, loving, little Bella and she is doing OK.
On Sunday I went to church and someone asked how she was. Pause. OK. Oh good, when is she coming to church? Ahh…in a year, if we are lucky. shock. Oh well. So I retreat back to my medical world where I am beginning to feel more comfortable. :) Crazy thought that I would ever feel comfortable here. Case in point. I now search the web looking for medical supplies to make our lives easier. :) My latest find, the adapta-cap from Baxa, no more losing even one drop of precious compounded medicine that’s only good for 8 days. We are at that pharmacy every day it seems like for something.
Bella is doing so well. Dr. Louis didn’t want to say anything, because she didn’t want to jinx it, but Bella has been out of the hospital for a month! A month! Wow. She is amazed. These kids, she says, have a very high re-admission rate, and here we are one month out! WAHOO!!! She congratulated us and lectured me on taking care of myself. :) I have been sick since I got home. Stress, it’s just stress. We’ll get through. :) She cautioned us that Bella is still very fragile, but that we are doing a good job. :)
Bella is now taking inhaled gentamicin. She was on gent many times before, but never through the nebulizer. Fun! That way it goes straight into her lungs where she needs it.
Her collar trials are going well. She is totally on her own during them – no oxygen anymore (HUGE). And she is doing it. She is keeping those sats above 90. Sometimes only for 30 minutes, sometimes for an hour. But she is doing it. Way to go baby girl!
Her PT came out to do her eval and was pleasantly surprised by how well she is doing. Yeah, Bella! She has more head control than she expected. Again – yeah for the strong girl!
I found out that her OT’s specialty is oral issues – wonderful! And everyone that knows the therapists in the area is thrilled and shocked that we got this one. She has an excellent reputation and is very hard to get into. Not only did we get her, she comes three times a week. Yeah again.
So, how is Bella? She is OK. She is getting over this respiratory thing OUT OF THE HOSPITAL. Her therapies are all lined up. She is the cutest little bug. And we love her. So I guess she’s more than OK, she’s fabulous.