Still Fighting the Vomiting.

For those of you who follow me on Facebook know that we are stilling battling the vomiting. The Prevacid and Bethanechol didn't work. The PH probe is scheduled for Jan 4. I'm not sure if we'll do the whole study in the hospital or if we will be coming home with the probe in her nose. We have to be at Scottish Rite at 8:30 Friday morning. I'm just ready to get this figured out so we can continue to move forward. I knew when I had Wendy that life would consist of constant battles for her health and I'm okay with that, but still as her mother, I can't stand seeing her vomit up everything I put in her tube and her losing weight (she's right at 14lbs now, which means she's lost about 4oz total, but that's a couple weeks worth of gaining for her).  However, on a brighter note, Wendy had a wonderful second Christmas. It completely wore me out dragging Wen here, there, and everywhere, but she had fun. I hope everyone had a great holiday too and I will update as soon as there is some change or after Wendy's probe study.

Update

First off I want to say thanks for all the prayers and concern for Wendy! I wanted to get in a quick update for everyone. Also, for everyone that isn’t used to the feeding tube/medical lingo, I’ll try to add a link or explaination for all the weird terms I may use.


Dr. Pilzer (who is super nice, btw) fit Wendy in today, thanks to another mom telling her about Wendy. (Huge shout out to Ashley McGee for helping us out big time today! As Dr. Pilzer said, sometimes it’s not what you know but who you know.) Her first suspicion for the vomiting is reflux, since Wendy was diagnosed with it at just a few days old. Our first attempt to fix it will be switching from Pepcid to Prevacid. If in 3 days the vomiting is no better, we will add Bethanecol to her list of medicine as well. If Wendy is still vomiting next week, she will have a PH probe study. We are planning on doing that between December 31 and January 2, which also means we will be canceling our surgery appointment. (I’ll touch more on that later.) If the PH probe study comes back showing Wendy has severe reflux and that is indeed what is causing all of her vomiting, she could possibly need a GJ button in place of her G tube button or she could have to have a fundoplication.

GJ stands for gastronomy-jejunostomy. It’s a tube that’s placed in through the stomach (where her current button is) and extends through her stomach into the jejunum (small intestine).  I’m not exactly sure if/how her intestinal malrotation will effect this, but I suppose we’ll deal with it, if/when it becomes an issue. This also means, if Wendy can only survive with the food being put in her intestines that she will never eat anything by mouth.


The fundoplication is a surgical procedure that is used when medical therapy fails.  In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped around the lower end of the esophagus and stitched in place, which reinforces the closing function of the lower esophageal sphincter. If a fundo is needed, it will have to be done prior to her having her final surgery of removing the colostomy. Dr. Pilzer also said, before we remove the colostomy, we need to get Wendy on a diet of a lower calorie formula and see if her muscle tone improves. She said with a child with low muscle tone and high calorie formula (which already can cause constipation) can cause severe, life-threatening constipation once the ostomy has been reversed, which often results in them placing a colostomy again. So for now, the ostomy reversal is being put on hold (since it’s not a life or death situation right now) and her keeping her food down is.


With all that being said, Dr. Pilzer was not at all concerned about Wendy still being on formula or her small size (which those were two things I was concerned about with taking her to a gastroenterologist). She said children with other common chromosome abnormalities have their own growth chart, so we are just having to make our own chart for Wendy, since her anomaly is one of a kind. She also said Wendy was not considered a “failure to thrive” because she is proportionate, growing at a steady rate, and she has baby fat rolls. Dr. Pilzer said Wendy is just considered extremely short statured.


All in all, I’m not wanting to have to go to the extremes of having another surgery, and I am hoping that the Prevacid (and if needed the Bethanacol) will fix the problem. However, I am very happy we got Wendy seen about today and I feel much better since we are working to figure out and fix this issue.

A Beautiful Boy, Taken Too Soon

Nathan’s Facebook Page: Pray For Nate

No parent should have to bury their child. It’s unfair; it’s heartbreaking; and even though I never met Nathan in person, he and his story have made a difference in my life.

When Wendy had her surgery this past October and I was at my breaking point, I saw a status update about sweet Nathan, and I remember thinking that there was no way I could continue to feel sorry for myself because Wendy was not facing anything life-threatening. This was the update: “The official update on Nathan: He has aspiration pneumonia. We were faced with intubation, hospital stay and possibly never being extubated since his neurological state is so fragile or... we go home we treat it the best we can with breathing treatments, antibiotics, and prayer. I at first opted for the first choice, but when it came time to intubate him, I couldn't let them do it knowing he may never get that tube pulled out. I couldn't bring myself to let him spend the rest of his life with a tube down his throat just because I wasn't ready to let go, so we have decided to give it to God. His seizures have returned averaging 1 every 5 minutes, which very well could be because he's sick and theres a chance he will overcome this illness and the seizures will go away again. Even if that chance is slim, we remain hopeful and we ask that all our friends and family remain hopeful as well and that you all pray. I have learned through Nathan's journey that the strongest form of medicine does not come from a doctor or a pharmacy, it comes from prayer... it comes from God, so take a second or two or three throughout your day to pray that Nathan can get through this. ~~ Christina”

Nathan never received a diagnosis. His family received his prognosis based on his MRI, but they did not know why or how it was happening. His doctors assumed it was due to some sort of metabolic disorder or neurodegenerative disease, however, they were told there was so little known about both that they would never get a diagnosis. Nathan suffered from intractable epilepsy, failure to thrive, grand mal seizures, go issues, apnea, and brain atrophy. On November 11, 2012, he died from cardiac arrest. He would have been 22 months old today.

Even though Nathan is no longer here in the physical world, he has definitely left his mark. His family continues to advocate awareness and they are keeping Nathan’s memory alive by sharing his story and I want to personally thank his mother, Christina Earle, for sharing Nathan’s medical history with me, so I could write this blog.

Christina’s Blog:  http://www.xtinalynn.com/

Thankful for a Pediatrician That Listens

After almost 4 days of keeping nothing down, I told my pediatrician I suspected a milk allergy. Her first words were, it’s possible, let’s try a different formula. We are both still hoping it turns out to be a virus that was causing Wendy’s vomiting and hoping that the soy is just a little easier on her tummy and that we’ll eventually be able to go back to products containing milk, but for now, I am just thrilled to know my baby is not starving to death and that she can breathe through her nose. The mucus has cleared up almost completely and Wendy has held down her soy formula since 12:00. Every other feed we are still doing pedialyte, and our goal within the next 24-36 hours is to be back on full feeds. We’ll continue the soy based formula (as long as she’s still tolerating it well) for the next 1-2 weeks and after that we will decide if we want to try to switch back to her normal formula. As for now, I am going to try to get some sleep. I’ll have to be up every 3 hours to switch her pump from formula to pedialyte so I better rest while I can. I’ll try to keep everyone updated as much as possible. Thanks for everyones prayers and concern. :)

Vomiting Formula? Keeping Down Pedialyte...

About 2 weeks ago Wendy started getting a snotty nose. I figured it was no big deal, change of season, etc, etc. I ran a vaporizer, used saline and suctioned when needed, and put Vicks Baby Rub on her before bedtime. About a week ago, she began vomiting some. Not after every feed, so I just figured it was the mucus draining on her stomach and making her queasy. 2 days ago, she began vomiting every formula feed I gave her. She kept the Pedialyte down fine. No fever. No cough.


I called her pediatrician yesterday because I was worried when she couldn’t keep down the formula. Her pediatrician said to push Pedialyte for 24 hours then do formula every other feed. She said it was probably a virus and there was no need to bring Wendy in around the sick kids who were coming in with strep and the flu. I gave her straight Pedialyte from yesterday around lunch until 5:00 today (that’s what time we got home from the appointment with her surgeon and I didn’t want to start formula feeds in the car in case she got sick). 30 minutes after her feed began, she vomited it all up and her nose is super snotty again. (Her nose had cleared up completely when she was on the Pedialyte.) I know milk breeds mucus, but this is extreme. And it may be a simple sinus infection, virus, cold, whatever, but I am freaking out. This is the 3rd day she’s not been able to keep any formula down. She is already tiny- 14lbs and 14 months old (she’s only gained 8oz in the past 2 months). I’m beginning to wonder if she’s developed an allergy to milk; she’s on Similac Neosure; or if she’s gotten “food poisoning” from a bad batch of formula. She’s had a virus before and even then she’d vomit a little of the Pedialyte (not as bad as the formula, but this is so strange that she’s keeping every bit of the Pedialyte down). I don’t know, my mind is running crazy right now, and I am taking her to the pediatrician first thing in the morning. (I’d take her to the ER, but honestly, with a baby with Wendy’s extensive medical history, a doctor in the ER usually doesn’t know what to do with her and I’d rather just give her Pedialyte and keep her hydrated until her doctor that knows her history can see her in the morning.)

Prayers please! My nerves are shot and I’m sure it’s going to be a long, long night. On top of my back being messed up (I’m not sure what’s wrong with it, but my lower back is killing me and my legs are going numb; I have an appointment for myself at 2:00 tomorrow, so hopefully I will be able to make it.) Also, Wendy’s appointment today with the surgeon went fine. We continue dilating her anus and going up sizes every 2 weeks and on January 2, as long as she can be dilated at a big enough size, we will be scheduling surgery.