Things here have been busy busy busy! Both babies have had a ton of appointments and have a ton of appointments coming up.
Last week they both had cardiology and genetics and Amber had G.I., vision therapy and dental. This week they both had chest x-rays. Amber had a swallow study and Charlie had knee x-rays. We also started Amber's schooling process and Make A Wish process. Next week they both have ophthalmology and Amber has her appointment with the augmentative communication clinic. In the next couple of months Charlie will be seeing orthopedics and have a therapy evaluation. Amber will be having another swallow study, GI follow up and be seeing a feeding specialist. Not to mention our usual weekly early intervention therapy, monthly vision therapy and weekly hospice/nursing visits. Oh and any other additional specialist visits they throw in there.
On top of all of this Amber is unfortunately sick again. She seemed off on Tuesday and was having issues in her car seat. The chest x-ray she had on Tuesday showed some additional atelectasis (meaning the air sacs are not fully inflated) than her usual amount in her left lung. Normally we would assume that it's just a progression of her disease. However since we were/are hearing a lot of "crackling/wet sounds" in that area and she had/has a lot of congestion and a very high fever (up over 103) it was safe to assume she has a respiratory infection (most likely her usual pneumonia). Thankfully we caught it quickly and started her on an antibiotic Wednesday night. I think because we were able to catch it so quick she's not as bad as she was in November (I've only had to use one comfort care med once) but she is still struggling a lot and her heart rate has been really high. We switched her to a stronger medication for her secretions and increased her O2 flow which gave her a better night sleep last night. The lower part of her right lung is now sounding a little wet today but she's in a much better mood so hopefully we're on the road to recovery.
It's been non stop here lately. We unfortunately had to let our night nurse go so we'll start interviewing new ones as of tonight. Luke was in a snowboarding accident last week and got a pretty good concussion. He was laid up for a few days but is doing much better. Amber was seriously unhappy with her lack of "daddy time". I'm gearing up for arm surgery at the end of the month. I'll have a plate and screws taken out that have been giving me some trouble. It will be interesting to see how the babies will do with less "mommy time" for a day or two and how mommy will do with less baby time! When it rains it pours! Thankfully Charlie seems to be doing alright and thankfully Amber was not sick last week and should be healthy for my recovery.
I'll definitely have updates about their latest appointments in the next couple of days because I'm righting them up right after this :)
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