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Breaking in the new insurance

Our insurance changed on 1-1-11 and I was just grateful that we didn't have to use it until January 3rd. :) After a really rough day on Sunday (as in, back to vomiting 4 times that day, all the G tube drainage being bright yellow & green again, not napping at all or only for 15-20 minutes at a time in the stroller, waking up screaming and vomiting, and sleeping the entire night in the stroller in the living room) I emailed the nurse late Sunday night and told her that we would love to come in before January 13th when our next appointment was scheduled. I listed the reasons why, among which was my concern that the new GJ tube she had put in while we were in Ohio is smaller than the old one and asked her if there had been any cancellations between now & the 13th. She emailed me back yesterday morning and asked if we could come in at 4:15 so we did. Luckily I have nice friends who let me pawn the other 3 kids off on them on very short notice. :)
Whatever progress we had made towards Raya getting over her hatred for doctors' offices/hospitals/medical facilities/medical personnel pretty much went down the drain during our hospital stay in Ohio. She's back to hating them all. I wish she could understand that they really are there to help her. Someday. :) As soon as I started taking her clothes off to measure her length & weigh her, she started crying & screaming. (BTW, she's up to 10.57kg/23lbs 5 oz which is HUGE compared to our other babies and we're very happy that she's got some meat on her bones) I can't say that I blame her for getting upset though, it was chilly and we laid her on a cold, hard plastic board to measure her and then sat her nekkid little bum on a scale in the cold drafty hallway. Luckily she calmed down after they left us alone in the room to wait for the doctor. She was happily playing on the bench next to me when the doctor suddenly knocked on the door & walked in & said hello. Raya was startled and climbed up me like a scared cat runs up a tree. It was kind of funny but kind of not.

Here's what we discussed:
  • Increased discomfort, especially at bedtime & when she's waking up puking & dry heaving
    • We're going to increase the 2 neurologic meds she's on but we have to do it slowly & do it one at a time
  • Lack of naps & difficulty getting her to bed at night
  • Big increase in reflux symptoms
    • We'll increase her Prilosec again since it's been a long time since we increased it & she's gotten really big since the last time (should help with comfort level in the early morning & help get her to be comfortable enough to go to sleep)
  • Possible need to change her GJ tube back to the slightly bigger size she had in before
    • I'll give it a few more days & see if I still think we need to change it or not (we'd all rather not have to do that yet)
    • There's granulation tissue around it again so that might be what's bothering her and not the actual size of the tube.
  • What did the Dr. in Ohio say?
    • He wants us to try Periactin or Zofran. Raya's Dr. says no to the Periactin because it's an antihistimine and the American Academy of Pediatrics says not to give antihistimines to children under the age of 2 because of the risk of cardiac complications. Zofran (anti-nausea med usually given to chemo patients) is a possibility but we may have a difficult time getting insurance to approve it because it's typically only given to chemo patients & sometimes to pregnant women.
    • Pretty much everything else in the letter was stuff he had discussed with me before we left.
  • What's our game plan?
    • The goal is to make her comfortable enough to sleep all night long & not wake up vomiting & dry heaving. I would LOVE that. So the plan is:
      • First, adjust her medications to a point where she's comfortable & her symptoms are minimal.
      • Then after that, we can start trying to do bolus feeds into her stomach a little bit.
  • I asked about the possibility of introducing real food that has been liquified in the blender. I would LOVE to see how her body handles real food compared to her formula.
    • She surprised me with how on-board she seemed to be about having us visit with a lady in Tucson who is very well-known for helping food aversive kids eat and helping parents with introducing a blenderized diet for tube-fed kids. She even said that in Raya's case, she would be okay with Raya losing a little bit of weight in the process. Normally, she doesn't agree with that philosophy when it's a low-weight child but we've done a great job putting some cushion weight on Raya.
    • BUT (there's a but) we need to make all the other adjustments we talked about first and be patient. Raya's body has always had a difficult time coping with changes so we have to take things slow with her. Besides that, one of her neurologic meds can only be adjusted by a certain amount every 2 weeks so hopefully we won't need to adjust it too much.
  • DIAPER RASH of all diaper rashes! The poor girl. The term "diaper rash" doesn't even begin to describe it. On days when her body drains more bile out of the G tube, she's ok but now that most of it is going through her instead, the second she poops, there are blisters forming. We've used Aquaphor, which used to work on her, and Ammens powder, which also used to work on her and on our other kids, but neither one of them has made it go completely away. She wrote us 2 prescriptions (one for Aquaphor+something and the other for Nystatin because she said it looked a little yeasty) for the diaper rash and also told me to use something called Balneol to cleanse her diaper area with instead of wipes. I'm still trying to find the Balneol though.
Well, I think that's pretty much it. This morning I took her to the initial eval for OT, which I'm VERY much looking forward to moving ahead with. I was worried about how she'd respond to her OT but she seemed to really like her (WHEW!) and crawled all over the room playing the whole time. Hopefully soon she'll feel the same way about her PT that comes to our house because so far she cries for at least half the session every time. I filled out a sensory profile about all Raya's fun little quirks, and then I sat down at the computer tonight and emailed the OT another long list of all the things I forgot to mention when I was there today. Like how she frequently throws up during and/or immediately following car rides. I noticed today when I yanked her out of the carseat in the garage so she'd throw up on the floor and not in the car that there's actually a large stain (with many other smaller stains on top of it) from all the times I've yanked her out of the carseat so she could throw up on the floor instead of in the car. :) But I digress. Anyway, I'm hoping that DDD will approve Raya for OT very quickly (pipe dream, I know) because I need guidance. :)


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