Monday, January 14, 2013

Cold, Virus, Reflux? I just want ANSWERS!

I have been so busy that I haven't had a chance to update sweet Wen's blog lately. I just want to do a little recap on what's been going on with her.

It all started back in November, with what I thought was a cold. She had a runny nose and when she vomited it was a thick, foamy mucus. I attributed the vomiting to sinus drainage, and didn't think much of it. A few days later she had a low grade fever and was coughing/sneezing and still vomiting, all of which I assumed was part of the cold that I thought she had. The fever went away, but all of the other symptoms continued through the end of November. Also, on November 30, I noticed she had a yeast infection around her stoma, which is not uncommon with a compromised immune system as well as her being on antibiotics daily.

On December 3 Wendy began vomiting every feed. She had no fever and no cough. She could keep down Pedialyte. After seeing her pediatrician on the 5th, we switched to a soy formula thinking it could possibly be a milk allergy, or a virus that triggered a temporary milk allergy. All the mucus she had went away however the vomiting did not stop or slow down. Many times with a milk allergy, children can also be allergic to soy, so on December 10, we switched to Neocate.

December 19 we saw Dr. Pilzer, a gastrointerologist. She suspected reflux, since Wendy had previously been diagnosed with it as an infant, so we switched the Pepcid to Prevacid and was told to add Bethanechol in 3 days if the Prevacid alone wasn't enough, which we had to do. Within the next few weeks, Wendy had some days she vomited constantly, and some days she didn't vomit but once or twice or sometimes not at all. December 31 we stopped all medication for reflux.

January 4 was Wendy's pH probe study. We went to Scottish Rite (which can I say, the experience there was a million times better then Egelston, so I will be requesting to go to SR for her next surgery; of course even SR was not close to Vanderbilt, but it sucked much less than the crappy care we received at Egelston). They put the probe in her nose, took an x-ray to make sure it was in the proper place, then sent us on our way. I had a journal that I had to keep which said when she was sitting up, laying down, when she cried, when she vomited (which of course she went the full 24 hours with no vomiting), etc. I took the probe out the next morning when the recorder said it was stopped.

The next night at 2:00am she began vomiting profusely. She vomited every single thing I gave her, even Pedialyte, which is not normal. Her ostomy output had turned light green/yellow and water-like. (Everyone we had been around caught this mess within a day or two, so everyone was really sick.) The next day, she didn't vomit at all. She did really well and didn't vomit much (maybe once a day) until January 10. The 10th and 11th were rough. But for the last few days she's been doing better. Her ostomy output is still runny and not it's normal color. I'm wondering if her tiny body is still trying to fight off that awful virus.

We see Dr. Pilzer on Wednesday. I have had some parents suggest a blended diet, so that's going to be something we discuss. We'll also talk about the test results and whether a GJ or fund is needed. I really don't want to resort to either of those, but I want a solution because there is obviously a problem. The suck swallow study is another thing I am going to push for because Wendy wants to eat. I will try to update again on Wednesday after we see her GI specialist.

It's been a tough few weeks, but we'll get through. We always do. This is just another unexpected bump in the road, one of many I'm sure we'll face.

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