She is still very sick :(
This picture is from last Tuesday on our way home from her appointments.
She fell asleep while she was trying to eat the tag on her doll.
This Tuesday she did not want to get out of bed!
The pneumonia Amber was fighting last week is gone but unfortunately over the weekend she came down with a viral infection. For Amber viral infections are bad news. There really is not much we can do for them medically, no antibiotics it just has to run it's course. This one has hit her pretty hard, it didn't help that she caught it at the end of having something else, it's been rather touch and go all week. We have her on the highest flow of O2 she will tolerate. We're keeping up on her medications to help fight secretions, fever and we have her on one of her comfort care meds to help with breathing and heart rate. We've gone to all feeds through her g-tube and feeding her only pedialyte. So far things have been going alright, it's been a struggle for her but we've been managing.
Last night and today she went back to demanding a bottle and tolerating it pretty well. She seems like she's getting over the viral infection but unfortunately her poor little body is so tired from fighting that now she's having breathing issues. All day today she's been very lethargic and having episodes of her O2 levels dropping and some mild cyanosis. At this point we're concerned that her CO2 levels are on the rise again. There isn't much we can do for this. We could bring her in and put her on a CPAP machine, something we've ruled out before because we don't think she would cooperate with it and could make her more upset. Her levels were elevated last spring but came down on their own once she was feeling better. We're really praying that this is what's going to happen this time around. We'll be keeping an eye on her tomorrow and seeing how things go.
Feeling a little better yesterday, playing with Daddy.
This also means the appointment I made a year ago for her with the augmentative speech clinic will have to be canceled. This is really a bummer to me because I have been fighting since she was 1 for her to get speech help of any kind. I was so excited to get her into the clinic and so excited to see what they would be able to do for her. I can't explain how hard it is to not be able to communicate with your child, especially once you start to see how frustrated they get in their inability to communicate. Hopefully we can get her appointment rescheduled soon and not have to wait another year.
Hopefully we can just get her feeling better and back to her fully happy self!!
And here is a non sick picture from a few weeks ago. Daddy with his two babies! Amber's telling Charlie some sort of story here, I know she doesn't look too happy but she was!