Yikes, I'm really not doing well with my blogging lately!
Theres some changes to Amber but I've just been too busy to update!
Amber has been pretty sick on and off since January. Some of this sickness her Dr's are thinking is the I-Cell progressing and the rest is just that her body has a hard time fighting off a simple cold. It's hard to really tell because her labs show (for about a year now) that she's fighting some "infection". From birth her body has not been great at regulating her temperature, usually she has random fevers or just a higher regular temp. Also, from birth she's had a lot of mucus/secretion/snot. So you see our predicament; it seems she's always sick so it's hard to tell when she's really sick.
Not only has she been hit pretty hard this cold season when she's not fighting off something she's been having episodes of respiratory distress. Meaning when she's attached to her pulse-oxygen monitor her oxygen levels are dropping to bad numbers, to say it the easiest way. When this happens you can also see her get paler and working harder to breath. Unfortunately this has been happening more frequently and it's getting harder to get her to recover.
We've been discussing this with all of her specialists. Unfortunately it seems that we're already doing everything that we can for her. We've added a prophylactic (meaning daily) antibiotic to her daily plethora of medications. It really made a difference she was really healthy and acted like a whole new baby! Unfortunately (word of the day) she's sick again. We've also added a nasal steroid that will hopefully reduce the size of her adenoids, they are thinking that might be the explanation of the random distress. Unfortunately (are you counting) she would need another sleep study to confirm this and like the MRI we wouldn't be able to do anything with the information from this test (it would be a surgical fix which is a no).
The other stinky news is it seems like she's needing more oxygen to recover from times of distress and needing it for longer. Her pulmonologist believes that the oxygen might actually not be helping her anymore or not as much. It could also be a reaction to oxygen and some of the medicine she's on but we won't know more until she sees her cardiologist (May 2nd). The only fix she can have for this would be to play around or to add medicine.
Our other new news is Amber has been approved for 32 hours of nursing a week. Part of me feels like this is admitting defeat. I'm trying to convince myself that it's important (since we're seeing her get worse) to get someone in now to learn her baseline (how she is not sick) so they can help more effectively in assessing a situation when she gets really sick again or progresses more. They'll probably start within the month or so once we pick the person or company that we want to work with.
I think that's it. This Thursday Amber has a GI appointment and hopefully she'll be getting a new g-tube button. They're supposed to be changed every 3-6 months and she's had the same one for almost a year. We will not be keeping it as a memento let me tell you it's gross and starting to get stinky!
Her cardiologist appointment is her last follow up and then we'll be on another break from Dr appointments until the fall! Of course then we start summer adventures, showers and wedding season!
Maybe by next spring time we'll have some down time!
Tomorrow is Early Intervention not sure how it will go since Amber is sick but we'll be discussing her walker! And I think I'm officially done now!! I'm also waay to tired to re-read/fix this so sorry in advance for any grammatical errors or incoherent babbling!