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The inevitable

I had predicted that within the first 4 weeks of school, Raya would catch some kind of bug. I was right. She's caught a cold. Her eyes are watery and she's got wicked post nasal drip. She's nice and crabby all day long and then coughs and gags all night long. There's not much coming out of her nose most of the time and what does come out is clear, but I think most of it is running down her throat into her stomach. Blech.

Wednesday was her first night with her new medication. (it's the one we started after more "natural" remedies failed, to try and help with her anxiety so she can sleep better) It was AMAZING. She started to get drowsy about an hour after I gave it to her, which was exactly what one of the doctors had said would happen. At that point, she crawled up on my lap and went to sleep. I was almost giddy. First because it's VERY rare for her to snuggle with me or anyone. If she does snuggle, you're not allowed to touch her with your hands. Once she was sound asleep, I didn't want to put her in bed so I just snuggled her on the couch for a while. Unfortunately, this was the day she'd woken up with the stuffy nose and post-nasal drip so she was snoring like a chainsaw and her feeding pump was making this noise:

Isn't that nice? Apparently that's what happens when a pump bag breaks and fills the pump with Peptamen Jr. So between the snoring kid and the dying mule sound coming from the feeding pump, I wasn't getting much studying done so I put her in bed. She got upset and started coughing but still wasn't really awake so I left her. Then around 10:30-ish, she started coughing and gagging a lot and it scared her so I ended up bringing her out to the couch so she could sleep propped up. She and I slept on the couch, which sounds nice but was terribly uncomfortable. I didn't dare move because I didn't want to wake her up. When Donny was leaving for work at 5:15, she popped her little head up and said in a loud, clear voice, "Bye bye, Mommy!" and then promptly laid back down (with her back against my legs, head on my knees, and her feet against the back of the couch) and was out cold again. I actually didn't think she'd make it to school yesterday because she was still asleep at 7:00 and we have to leave for school at 7:35. At 7:15 she woke up and when I asked her if she wanted to go to school or stay home, she said she wanted to go to school. The whirlwind commenced and we made it there at 7:46. Luckily for some reason everyone else was late yesterday too so we didn't feel too bad. Actually, I didn't feel bad at all. I was rather proud of myself for getting her ready that fast, especially given how she hates to be rushed.

Things are still going okay with her stoma. Just okay, not great but not awful either. When she first got the new tube put in, it felt really snug. It has felt progressively less snug since then and she's had a TON of green snotty gunk coming out of it. I called the surgeon's office and left a message for the nurse a couple days ago because she was getting new granulation tissue. That's what got us into this mess to begin with so I reeeeeeeally want to avoid new GT, so I was hoping to get a prescription for Kenalog cream. When I called, I asked the receptionist to let me speak to a NURSE. She said she'd transfer me to our surgeon's medical assistant (whom I've had very negative experiences with in the past) and I told her I would like to speak to an actual nurse, not the MA. We went back & forth for a minute and she finally let me leave a voice mail for the nurse. Her return call was very disappointing. She was just as condescending and snippy as the MA. She wouldn't listen to me, told me everything I already know & was already doing or planning to do, and made me just not want to ever call their office again for anything. Then she had to argue with me when I told her I had heard that you're not supposed to use petroleum-based products on a G tube because it can damage the silicone. (It's true, I checked with the manufacturer...) I finally ended up telling her to just forget it and I'd talk to the surgeon next week. She told me I could email her a picture of the stoma and she'd show the surgeon and see if he thought anything needed to be done. Then she didn't bother to email me back so yeah, I won't EVER be calling the surgeon's staff for help with anything again. SO irritating and disappointing. It's sad when you like a doctor but can't stand their staff. If that's the way their staff treats parents, then I'm really grateful that all we're dealing with here is a G tube and not some major surgery.

Anyway, I knew the tube seemed loose so I checked the water in the balloon. Unless the surgeon only put just under 5ml in the balloon when he put the tube in, the balloon has lost water. I added almost 2ml so it's just under 7, which is the maximum recommended volume for that size tube. That has helped the leakage some. I've also been using Calmoseptine ointment, which acts as a moisture barrier to protect skin from leakage. I got that at Walgreens right in between 2 packages of adult diapers, in case anyone wants to know where to get it. It's really good stuff. Unfortunately, although adding water to the balloon and using Calmoseptine has helped the leakage & skin irritation, it's not doing anything to help the granulation tissue, which was the reason I called the surgeon's office to begin with. I've also been using Mepilex AG, which is a foam wound care dressing with silver in it to promote healing. I had hoped that the Mepilex would help the GT enough that we won't need to use silver nitrate sticks to cauterize it but I'm pretty sure that's what we're going to end up doing when we see the surgeon next week.


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