Tuesday, January 29, 2013

Raising Money for Ronald McDonald House Charities

As most of you know, Zed and I stayed at the Ronald McDonald House the last 6 weeks Wendy was hospitalized. Since Wendy was born Zed and I said we want to donate money to a good organization every year. Last year, I raised over $1,500 for March of Dimes. This year I want to give back to RMHC. I’m going to raise money until March 30 and then sometime in April, I want to get a group of people together and we can all go to the RMH in Atlanta and cook for them and help out for the day. (We can all wear our tie dye Wendy shirts!)

I added a donate button on the right side of the page if you would like to make a contribution. I am in the process of making a webpage for donations, but in the meantime, the donate button can be used, as well as PayPal (wendys.mom7.10@gmail.com).

For those of you wanting to order shirts, here’s the website:

Please feel free to share this blog with all of your friends. I hope to raise $1,000 in honor of Wendy to donate. Every little bit helps and the Ronald McDonald House Charities is a wonderful organization. 

Wednesday, January 16, 2013

GI Doc.

This morning Wendy went to see Dr. Pilzer, her GI specialist. The test results from the pH probe were back and even though Wendy wasn’t vomiting that day it was clear that she had quite a bit of reflux, but not enough for a GJ tube or fundoplication. She is going some days vomiting only once or twice, and other days she may vomit every feed. We’re still not sure if it’s from the reflux, or one of these horrible viruses that have been circulating.

So for now, we continue with the medicine (Prevacid and Bethanechol). We are also moving from 26cal Neocate to 30cal Neocate and every other feed we are going to mix in a tablespoon of baby food. If she tolerates the tablespoon of baby food every other feed, then we’ll move to every feed, then to 2 tablespoons. We are just working on getting her a more diverse diet. We are also needing to help her gain more weight. Tiny princess weighed only 13lbs 13oz today (from 14lbs 4oz at her heaviest before the vomiting). 7oz may not seem that significant, but for Wendy it is; it takes her about a month to gain half a pound so it’s going to take some work to get her caught back up to where she was.

All of these notes were sent to Dr. Wulkan, Wendy’s surgeon, who we see on January 30. On January 30, we hope to schedule her colostomy reversal for sometime in February. While she is in the hospital for her surgery, we are to have another suck swallow study done. Dr. Pilzer said NPO until after the suck swallow study because her eating by mouth is not worth risking a bad choking spell, especially with all the vomiting she’s had lately. But if she passes the suck swallow study, we should begin feeding therapy sometime in February. We’re beginning to wonder if Wendy has a sub mucous cleft palate. Another child with a similar chromosome deletion to Wendy’s had one and that’s why it took her longer to learn to eat. Since they’re not always easy to detect, sometimes it can go unnoticed, but once we start feedings by mouth, we are definitely going to have it checked.

It’s a lot going on at the moment, so we just take each thing one at a time. First getting her to tolerate higher cal feeds, then the reversal surgery, then the swallow study, and finally the feeding therapy. Also, as soon as Wendy gets approved for Medicaid through the KB waiver (I pray she does get approved) we will begin physical therapy as well. Right now, Babies Can’t Wait doesn’t have a therapist that can work with her and no where around here accepts TriCare. Which, of course, as sick as Wendy has been lately therapy is about the last thing we could concentrate on. Oh, and once all of that is done, we need to have her kidneys checked again to see if she still has kidney reflux because if it’s corrected itself, then we can take her off the Bactrim and I’d be happy to see her on one less medication.

I hope I didn’t leave anything out. My brain has been in a bit of a whirlwind, so if I remember anything else I will add on later! As always, please keep my sweet girl in your prayers :)

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.