So we had a pretty good weekend overall but there are some crappy things going on for Raya too. We'll start with the good. First, while the big kids and Daddy were gone to karate Friday evening, we got to enjoy a wicked thunderstorm. It was so close that we could feel the thunder and it rattled the house. It was fabulous. I love thunder!! It rained pretty hard & fast too, as is typical with an AZ monsoon storm. The power went out too, so since it had cooled off a lot outside (from about 116 in the late afternoon/early evening to about 85), we opened up the doors so we could enjoy the storm. She then announced that she really REALLY needed to put on a warm jacket because it was raining outside. Never mind that it was still 85 degrees with 100% humidity.
She had a great time playing, even though it meant she was able to successfully fight off her sleep meds for the night. The power was out for about an hour, which gave me plenty of time to think about the fact that although I always encourage other people to make sure they always charge the feeding pump every night, we had not charged hers the night before and when you're using it 14-17 hours a day, the battery charge doesn't last more than a day or two. I have repented and we're being vigilant about charging the pump now.
Saturday night we had another storm with more lightning and before it rained, I snapped a few pictures and got this pretty one:
Well, as pretty as it can get with a garage and another house in the way.
Ah yes, and I also snapped this awesome picture during her OT session on Friday:
Instant classic. I love that picture. :) She was thinking REALLY hard to try and answer the question her therapist had asked. I think it was "name 2 parts of a building" or something like that. Good stuff.
There was also this precious little moment while Daddy & the big kids were gone:
Raya has no shortage of pet names for her baby sister. About 20 times a day, we hear her use her high-pitched baby talk voice to say, "Hello, my angel cutie bug! How are you? You're such a cutie angel!" and so on. It's sweet. :)
What's NOT sweet is that things aren't going as smoothly with the GJ tube as I had hoped. It's going about the way I expected, but not the way I hoped. We've had vomit this weekend (which I was kind enough to not take pictures of. You're welcome.). Thankfully it's only been in the middle of the night and not late at night, first thing in the morning, and throughout the day like she used to do, but it's still not okay. The thing about GJ tubes is that while it allows us to feed directly into her small intestine at a faster rate than her stomach can tolerate, the J portion of the tube holds the pyloric sphincter partially open and partially blocks it. This equates to bile backing up into her stomach and to her delayed gastric emptying being even MORE delayed. Last night, she vomited at midnight and threw up refried beans that she had eaten at 10 am. It absolutely should not be in her stomach 14 hours later. If anything, it should be at the other end of her digestive tract by then. She threw up Saturday night and needed a quick bath, change of clothing, change of bedding, and a drainage bag connected to her stomach. Sunday night, she threw up and was on complete and total sensory overload when I was trying to clean her up. She had her ears covered the entire time I was trying to wash the puke out of her hair and off of her body, and could not/would not sit down in the tub because she couldn't handle how the water felt. It was the perfect temperature, but she couldn't handle how it felt for some reason. Once I got her cleaned up and drained her stomach (which I was trying to avoid needing to do by using a Farrell bag to vent her stomach, but that apparently was not enough to keep her from puking), she was fully awake and back to her normal personality. That out-of-sorts, sensory overload mode is a little worrisome to me so it was good to see her get back to normal within an hour or so.
Our other adventure this weekend was a new one for Raya. She has had some itty bitty molluscum bumps on her arms & a couple on her legs for a while now. (FYI, molluscum contagiosum is a skin virus that causes little bumps on the skin and can take a year, more or less, to go away) The molluscum bumps themselves are not a big deal. They're tiny and you barely even notice them, but she woke up in the middle of the night a few nights ago feeling itchy all over, and she scratched at one of them that was on her arm. I caught a little glimpse of it on Friday afternoon or Saturday morning and noticed that the skin around it looked a little red. Saturday evening around dinner time, the redness had spread, so after her bath, I drew a circle around it with a pen so we could see if it spread more. Here's what it looked like Saturday evening:
The red bump in the middle is the molluscum, which previously had been skin colored, not red at all. By Saturday evening when I took these pictures, it was a little bit swollen and the red area was a little bit hard but not hot and she didn't have a fever or anything oozing out of it, so I decided that it didn't warrant a late night trip to urgent care or the ER. (I avoid the ER like the plague.)
On Sunday morning, it had spread pretty significantly and was harder than it had been Saturday night, and was pretty warm to the touch.
Since the urgent care we always go to doesn't open until noon on Sundays, we decided we might as well go to church and take her in afterward. While we were at church, it looked a lot better. It was barely even red anymore. By the time we got home though, it was more red than it had been in the morning and had spread farther, and was hot and hard, so it was time to go in. I was afraid it would be one of those times when I take her in to urgent care and they tell me I'm overreacting and she's fine, but it was not worth the risk of waiting.
It was our fastest ever urgent care trip. The MA called us back before I even finished signing paperwork and the doctor came in before the MA was done taking medical history & writing down meds & allergies. It happened to be my favorite urgent care doctor. (and yes, I realize that it's kind of sad to have a favorite urgent care doctor) He's awesome. I had told Raya they wouldn't do anything that hurt (which I later realized that I shouldn't have told her because it usually ends up being a lie) but he did his best to make it quick & painless for her. They used a J tip to pop it open. (J tip = little thing that looks like a pen that uses compressed air to inject lidocaine & numb the skin; usually used to numb the skin for an IV placement or labs) It popped that little bugger right open. She cried because the area around it was hard & swollen and painful, and probably more so because she saw blood and blood=pain if you ask a 4 year old. She cried for about a minute and then she was over it. She's pretty tough like that.
The doctor swabbed it so they can do a culture and make sure it's not MRSA. Since it's fairly likely that it could be MRSA though, he prescribed her an antibiotic that MRSA is usually susceptible to. She absolutely needs to be on it, but it really sucks that she absolutely needs to be on it. I feel like we JUST got her gut bacteria back in a healthy place after wiping it all out when she was so sick in February, and this will probably screw it all up again. There's not much we can do other than keep giving her probiotics, which she's already been getting. And pray. Which we've also already been doing. Her GI tract is not in peak condition right now already, so I'd be lying if I said that the prospect of what the antibiotics might do to her didn't scare me. Cellulitis is not something to mess around with though, so it is what it is and we'll just do the best we can to manage whatever the antibiotics do.
We were in & out of there in just under an hour and then we headed to the pharmacy to get the prescription filled. Thankfully we got there before they closed and they were kind enough to fill it for us on the spot so we could get her started on it that night. She was in quite the mood while we were at the urgent care & at the pharmacy, and thought that everything was hilarious, including herself. She was cracking herself up left & right. In an attempt to keep her somewhat quiet, I let her take lots of pictures of herself with my phone.
You know you're the mom of a chronic GI patient when the pharmacist tells you to expect severe diarrhea from the antibiotics and your first thought is, "Ooh, maybe that will increase her gastric motility too!"
Because nothing is ever simple with this girl, we then had to figure out whether it was going to be better to put the antibiotics in her G port or her J port. Long story short, I've had to put it in her J today so that it actually moves through her and she doesn't puke it up, which she may or may not have done last night. I couldn't identify anything but refried beans and bile in last night's vomit. The redness on her arm had spread more this morning and it looks like there is some bruising or discoloration around it too. She felt pretty good today with the exception of a few moments of nausea. I still think she would feel better if she ate a little bit, and I was able to convince her to eat some potato chips when I gave her the first dose of abx into her G port this morning.
I'm getting rambly but my point is that the GJ has not gone the way I hoped it would and if it keeps up like this, we'll probably have to go back to a G tube, which will be very disappointing for me since we'll inevitably have to slow her feeds back down. The idea of having to go back to a G tube and slow her feeds down makes me feel like I'm running in circles. Actually, it's more like I keep trying to run in circles but keep running into a brick wall instead. It's all very frustrating. Sometimes I just go over everything about her in my mind and think, "Really?! Why is it so friggin' hard to just digest food and eat!?!" But we'll keep plugging away just like we always do and I will keep reminding myself that although I try hard to do everything I can do to "fix" this, it is not in my control or my power to do that and I need to just keep relying on the one who IS in control to guide and direct us in what we should be doing.