The good news... well GREAT news, is that Rachel has gained weight. In fact, she is back up to 39 pounds, which is what she was back in December before she lost so much weight. Her skin is looking amazing. Her eyes are no longer sunk into her face. She doesn't have dark yellow-ish circles under her eyes. She is looking so healthy. It's been really awesome.
The downside to this is that she gained weight faster than her medical team expected. They only expected her to gain a pound or two. Not five pounds in one month. Because of this weight gain, her g-tube is now too small. They expected us to go three months before they would change out her bard button tube to a mic-key button. It's not recommended to replace a g-tube this soon after the original placement and surgery. Her body is still healing from having the tube placed in the first place. Usually the tube can be replaced during an office visit to the GI clinic. Since we're replacing the tube so soon, she has to go under anesthesia again. I'm bummed but I know it has to be done.
Her tube is so tight that it's really bothering both physically and emotionally. She has granulation tissue growing all around it and wakes up with "goopies" every morning. (meaning it's red and crusty and I have to clean it)
It's awful watching her get so upset over it. The last few days, she has been asking me to "take her tubie out" and to "go to the doctor and fix my tubie." It's tough. How do I explain to her that they don't have an opening in the OR until the 22nd. Ugh! She was crying last night and was complaining of pain in her tubie so I tried emailing her GI doctor. Of course she is out the office until Monday. I am really hoping we can get her tube replaced ASAP.
Other than this issue, she has been doing so well adjusting to being tube fed. We're no longer do night feedings. She gets a tube feeding for breakfast, eats normally (you know, the 2 foods she will accept and milk bottles) during the day, and then gets another tube feeding for dinner.
There's other news about therapy and school, but that will have to wait for when I am not a zombie. Now I must sleep!
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