I tried to get Addy to stand for a cute picture since it's been awhile since I posted a happy, smiley pic. in her new favorite shirt that she picked out. She kept walking off. That is definitely a good thing!
Addy had a good week considering she is fighting three different infections! I took her to the doc on Wednesday due to her g-tube had that lovely green gunk and her eye was red and she still had blisters on her mouth.
She was diagnosed with Stomatitis (the blisters around her mouth), g-tube infection and her eye was infected due to having an issue with her sinuses! She did NOT have hand/foot/mouth (which many people told me she did even though I kept saying it was not like it at all) or pink eye (which I also knew was not the issue) :) So she is now on Omnicef to help with the g-tube infection and an antibiotic eye drop for the eye. The Stomatitis could be caused by many things. Fortunately she just had her iron level checked last week and it was 13.1 so she is fine there. All of her nutrition doesn't change since her formula is her sole form of nutrition at this point. So not sure what caused it, we brush her teeth every day so I'm hoping that poor oral hygiene isn't the issue! She goes to the dentist soon so we'll make sure nothing is going on there.
On to the g-tube. I have found out that I think we are the only family that gets ONE g-tube per year. Yes you read that right, ONE! It is NOT an insurance thing, we can have 4 paid by our primary insurance. If we would need more, her supplemental Medicaid would kick in. It's the Nurse Practitioner that is in charge of g-tubes. She doesn't think tubes need to be replaced more than once a year unless it is broken. She has been with Addy since we brought her home. She was involved in all of Addy's surgeries (jg tube placement, analplasty, colostomy takedown etc.) I really trust her with the care of Addy. However, this whole one tube thing really gets to me. I know MANY of you change g-tubes yourselves at home all of the time!!! I have beyond capable nurses in my home all week that could change them too. Another thing... when Addy needs a new tube, we have to be checked into the hospital. Yes admitted! Then we go up to the PICU, yes the Pediatric Intensive Care Unit to have the button replaced. It takes forever sometimes and who knows what we are exposed to when we are in the unit. Fortunately we are a little separated, but still. When I took Addy to her pediatrician she didn't know who the NP was in charge of her tube because she's in a different network. She immediately got on the phone to talk to her about Addy's seriously infected stoma and the nasty looking tube. The water in her balloon is constantly turning a nasty yellow. The NP said that sometimes the water in the balloon can be black and it's fine. I totally don't agree with this. Fortunately my ped told the NP that since Addy has an infection she wants a few days on the antibiotics and then a new tube placed. So we will be going in next week to get it changed. I am praying for the day that we say bye bye to this tube :)
Addy had a great first week of school and is jabbering up a storm there! She didn't really say anything at school last year. Her teacher told me she's pretty sure Addy told her off about something :) Fortunately she couldn't understand her! I hear it's a real trip to watch Addy lead the Pledge of Allegiance, can't wait to video that! She loved music of course and is interacting more with the kids, being vertical is helping SOOO much! I'm so proud of my girl!
Look how well her hair is already growing back!
2 comments:
regarding the g button, we see gi at children's about that, and they have a standing order that we can get them anytime we want. I can't remember if you guys saw gi here, but I might talk to them about writing the order for her buttons so that you can change it whenever you want. and the water in the balloon should never be any color but clear. Gi has been very specific about that. If it is any other color, it is being exposed to things that it shouldn't be. And there is a defect. braska will sometimes have a button in place for 9 or 10 months, before the button starts to lose water and we will change it. But the water is always clear even after that much time.
and going to the hospital to be admitted to change a button that takes all of 30 seconds is crazy, I agree. I would definitely be looking for a different situation if it's possible.
That is the Addy face I have been waiting for.
Well,since we talked about the g-tube at length,the other day, I won't repeat myself but crazy how they make you do it ... me, bing-bang-boom,no time at all!And as far as changing it,I think I told you, it varies. Like RK said can be 6 months but shorter if I see leakage or intense color change.
Loving the hair regrowth and just plain loving your girl.
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