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Showing posts from July, 2011

Still doing fine

Have I mentioned before that sometimes progress is frustrating to me? It is. I like to understand things. I want to know why things are the way they are and why they work or don't work. I like to have reasons. But you know what? When it comes to Raya, I don't usually (EVER) get what I want.
When things started to go wrong with her shortly after she was born, I wanted to know why. I wanted to know why she cried for hours at a time every evening no matter what we did for her. I wanted to know why, even though I had narrowed my diet down to 8 mild foods (try getting enough calories to breastfeed from 8 foods!), she still couldn't keep anything down. I wanted to know why the spitting up turned into forceful projectile vomiting. For 18 months now, I have wanted to know why all these tests keep coming back normal or near normal when it is quite obvious that there is something wrong. 
And now, to add to my list of unrealistic demands that will most likely never be met, I want to k…

So far, so good

Aside from a few episodes of crying in her sleep last night, things went fine with the first overnight feed. She's being fed slower than she was with the GJ tube because her stomach isn't used to having formula in it, so if she continues to tolerate it, we'll increase her rate so she's not on the pump for as many hours.
I was surprised at how relieved I am about not having the GJ tube anymore for the sole reason that if the G tube comes out, I can put it back in myself. GJ tubes have to be placed at the hospital. Peace of mind? Yes, please.
Oh, and in other news, I finally got a copy of the letter from the neurologist who diagnosed her with cerebral palsy last October. Nobody had ever told me what type she has or given me a copy of the letter. Anyway, her diagnosis is spastic diplegic cerebral palsy, which means that it affects primarily her lower extremities. For once, I googled something and it actually helped instead of creating unnecessary paranoia. :)

We're out of the club

We are no longer in the GJ tube club. Normally with a statement like that, I would put an exclamation point but I don't feel like it. I still have very mixed feelings about this change, which has led me to the realization that I have become a cynic and/or pessimist when it comes to making changes with Raya. Why? Probably because she has a history of difficulty adjusting to ANY kind of change, especially big ones like where her food goes. NG tube=lost all desire to eat orally and really got the puke-fest going, G tube=turned a 24 hour hospital stay into a 5 day hospital stay because of increased vomiting & fever after surgery, started bleeding into stomach, started vomiting blood, kept vomiting blood for 2 months, etc. GJ tube=stopped vomiting blood but started vomiting bile, started requiring almost continuous drainage of stomach, retching replaced vomiting, etc. etc.
So yes, I am a cynic. I don't expect this transition to go smoothly. I will be putting towels around her …

Today is the day

We are back from our 2 weeks away from home and the much anticipated/dreaded day is here. Today, we will be saying goodbye to the GJ tube that Raya has had for the last 9 1/2 months and going back to a regular G tube. I have very mixed feelings about this. On one hand, I know it's a big step forward towards normalcy. Being fed directly into one's small intestine is not normal. :) It will also mean that she doesn't have to walk around with a bag of bile hanging from her stomach anymore, which will make it possible for her to do some things we haven't let her do yet, like go to nursery at church. Bag-o-bile isn't something to mess around with, you know. :) The theory has been that the J tube passing through the pylorus (opening from stomach to small intestine) has been responsible for the excessive bile in her stomach, so if that's true, removing it should alleviate that problem. I hope so because while we were gone, she started spitting up again and bile was wha…

Having fun in Idaho

Aside from all the meltdowns, Raya has been having some new and fun experiences in Idaho.
  







She's warmed up to people a bit since we got here a week ago and she's doing a little bit better about not clinging to my leg and whining every second of the day. She absolutely LOVED the little wading pool. I think she was in it for a couple of hours before I finally dried her off so she didn't become hypothermic. The water was cold and they were in the shade with a breeze blowing. Since she has NO sensitivity to cold (unless it's something cold touching her teeth or tongue) she would have just kept on playing all day. I couldn't find her swimming suit so she just played in a swim diaper, and one of her cousins was a little intimidated by her tubes. She was a little afraid to get in the pool with Raya until her mom explained things to her. Then she was fine with it and the kids had a great time. I'm SO grateful to have plenty of people to be around who do…

Just might have to move to Boise...

After the most efficient and pleasant Walgreen's compounded prescription refill process we've ever had, I'm finding myself contemplating moving to Boise JUST so we can keep refilling prescriptions there. The fabulous weather might have something to do with it too. :)

Road Trippin'

Well, we survived the 13 hour day of driving. The kids and I left at 7:00 Thursday morning (yes, just me and the kids, Daddy has to teach his class at the college until next Thursday) and drove ALLLLLLLL day and got to my grandparents' house exactly 13 hours later. That was in spite of having to make an extra diaper changing stop, several stops for road construction, and car trouble that turned out to be a result of one of the things the mechanic we took the car to to get it ready for the trip did to it. Oops.
Anyway, I'm happy to report that I didn't have to use my vomit clean-up kit that I put in the car before we left. There was no vomiting the entire way here from any of the 4 kids so I was thrilled. Raya did great pretty much the whole drive. She got upset about 3/4 of the way when I went to strap her back in the carseat but she got over it pretty quickly. For the last 15 minutes of the drive, she kept repeating, "Dee-OUT!" and was very excited when she got …

Here to stay for now

After much contemplation and my husband reminding me that he was leaving town for the weekend on Thursday, we decided to keep the GJ tube for a little bit longer. (remember how last time he went out of town, she got admitted to the hospital the next day & stayed for 2 weeks?) We're going to keep the GJ until we get back from our road trip at the end of July. Kind of like how last summer, we decided to keep her NG tube for 2 extra months rather than have her G tube surgery a week before we left for a 2-days-of-driving-in-each-direction road trip. We're pretty good at troubleshooting what we've already got so we'll just stick to it for now. We'll rock that boat when we get back into town so that if there's a problem, we can have it taken care of at our own hospital with our own doctors. Just to be on the safe side, I've already located the hospital where we're going that could replace her GJ if it had a problem or came out, and a compounding pharmacy …

The weekend

Here's a rundown of Raya's weekend:
Thursday- drained her stomach for 4 hrs total, 245ml
Friday-3 hours total, 175ml
Saturday- 7 hrs total, 205ml
Sunday- 3 hrs total, 250ml
Monday- 1 hour 20min, 180ml
Tuesday so far- about 6 hours, 135ml (I drained it all while she was asleep though and she doesn't usually have much coming out when she's asleep)
Not so sure if the EES has been worth it. I don't know if it's really helped reduce the amount of drainage at all or if it's just because I've kept her clamped more so the bile has been going through her instead. I've been draining her for about 30 minutes after she wakes up in the morning and then for a few minutes at a time throughout the day if she starts to act really crabby when it's not naptime or really hyper (either can be indicator that something's off with her GI system). I also drain her for a few minutes before I let her eat because the food stays in her stomach for at least 2-3 hours aft…

More eating

We always kind of figured it would go like this. As long as there was vomiting, there would be strong food/oral aversions, and as long as there were aversions, there would be no eating. We hoped that we'd be able to get the vomiting under control, she would overcome her aversions, and then she'd start eating. The part we weren't sure about was the time frame.
Since it took 18 months for her to stop vomiting, I expected it to take a while longer for her to gain interest in food and then a while longer for her to actually eat. She has really surprised me with her eagerness to try things. Once she had gone for a week or two without throwing up, her interest in food started to increase almost exponentially. It was like a light bulb went on for her and she suddenly realized that all that stuff everybody else puts in their mouths really isn't so bad after all. She is doing extremely well considering that it wasn't more than 2 or 3 months ago that she couldn't even han…