Children's Hospital Update

Sorry it has taken me so long to update, we are feeling so blessed to have the support and prayers from everyone! Your calls, texts, messages, and meals have been so helpful in this whole process!

So this week has been a little crazy, but here it goes... (long and detailed, for my own record purpose)

We had our clinic appointment at Children's Hospital on Tuesday, Chris was suppose to go with me, but to make this whole process even more interesting he came down with Swine Flu (yes we have all been vaccinated). So Monday night we sent Chris to his parents' house so we could keep the other kids away from him. So Chris' mom took the day off of work to watch the boys at our house and my mom drove me down to Children's.

During Kyler's appointment with a GI Specialist he screamed the whole time and was cramping, and was so hungry, and very much in pain and couldn't be consoled. At this point the doctor was very concerned and wanted Kyler to be admitted to the hospital because he had lost weight, he wasn't eating, and he needed quite a few tests to be done to figure out exactly what was wrong with our little guy since we had tried so many things. I was pretty scared at this point because going into the appointment I thought we would be coming home that day with some answers, and I really hadn't thought of the possibilities that it was going to be something on this scale. Although I also knew that being down at Children's was the best for Kyler knowing he would have great care and doctors.

Tuesday was a horribly long day, after blood tests, ultrasounds, x-rays, and getting Kyler's feeding tube in, we finally had him getting formula by tube feed at 8:00 pm. His last attempt at a bottle was noon and he only had an ounce to eat. You can imagine how hungry and exhausted he was, and I was. The part that was very frustrating and annoying was the fact they had to start really slow so he was only getting feed 1/2 ounce every 3 hours on continuous feed. WHAT? The kid was starving, and screaming! So over the next 12 hours while the feed was increasing every 4 hours I was holding him and trying to console him until his food intake was actually satisfying any hunger pains. Once they figured out that he could tolerate this special formula they stopped the tube feeds mid day on Wednesday and started letting him drink out of the bottle.

Since his blood, x-rays, ultrasound tests all came back within normal range (praise God!) we were in the process of looking at other factors. So throughout our 48 hour stay, here is what the team of doctors basically said were the contributing factors:

1. Severe Food Allergy to formula: since we had tried nursing (cutting out dairy), soy formula, and both kinds of hypoallengic formulas, they had to give him a very specially made formula called Elecare. This formula is the only formula that no baby can be allergic too. Both of the hypoallegenic formulas we had tried normally satisfy 90% of babies with allergies. So Kyler is in the 10% of allergic babies that need to be on Elecare. The interesting thing with Elecare is it is not sold in stores, or pharmacies. It is only available through a home delivery option through the hospital. This is a very expensive formula, but you can't put a price on the health of your child.

2. Severe Acid Reflux: when swallowing it burns on the way down (causing him to scream during feeds). Although he does not spit up, he still refluxes and it goes back up and he swallows it again. So he has been put on prevacid for that.

3. Colic: he also might just be a little bit more sensitive and could be considered to have colic like symptoms on top of the allergy and reflux.

4. Hunger!: That past couple weeks he was not getting enough food because of pain, so he could not be settled and consoled for very long periods of time without his body fighting it.

After treating those factors over the next 24 hours we saw a lot of improvement in Kyler and the doctors and I were very happy. On a side note I felt like I was on Grey's Anatonomy because of all the doctor teams, residents, nutritionists, ect. They would always include me in on there meetings with 10+ people and it was pretty cool to know how well Kyler was being taken care of and the amount of care he was receieving.

Since Chris was still home with Swine Flu, and I didn't have any clothes but the clothes I wore down there, Courtney came down on Wednesday and one of Leslie's friends that is a nurse at Children's also brought me a few things to get by. Also somewhere along the line I lost my voice and still can not talk very well...

So by Wednesday evening Kyler was on full bottle feeds, eating 3 ounces every 3 hours with little or no crying during eating, he was still having some cramping and discomfort after, but was able to get settled and sleep for longer periods. That night though he did have a few bad feeds, so when the doctor's came around for rounds on Thursday morning, we had to discuss why this might be happening and what to expect when taking him home. That morning though he did great with his next two feeds so they sent us home with a plan we all felt comfortable with.

Chris arrived just in time to be discharged, and we were so happy to have some answers finally!

Hoping the worse was behind us when we got home on Thursday afternoon, we got a little concerned when Kyler did not have a very good afternoon, and that night was a carbon copy of what we dealt with the weeks prior. We were very frustrated and with no sleep we went into our pediatrician for an appoitnment Friday morning. They called down to Children's and we talked to our doctor down there. They were surprised that he had gone back to his "old" ways after his success while being there. So if he continues to show theses signs they will have to do a scope of him, which means putting him under. Which would not be able to be done until Monday.

So we have a plan in place for the weekend, if he is not eating, he needs to be at the Bellingham hospital for tube feeds until the can have further tests on Monday at Children's. So I am counting ounces and keeping a record on how he reacts to feeds, etc. Praying, praying, praying!

Friday was a long day, but after a very long, much needed nap from Kyler that afternoon, he finally took another full feed, an through last night stayed on track with being able to eat 3 ounces, every 3 hours, with little or no discomfort during eating. I am so HAPPY to say the least! I am hoping that he stays on track and his body continues to adjust to the changes that were made and we will not have to back to Children's! His doctor from Children's called me last night and I feel a lot better about things this morning, PRAISE GOD!

Well not sure if you made it to the end of this very detailed report, but we are so happy to be home, and to have some answers for Kyler. This morning has been great, Crew and Brody actually got to interact with him a little bit with out Kyler screaming. Although we don't have a "perfect" baby since he will continue to struggle with somethings he can only outgrow, overall he is much more happier and is EATING, and sleeping some(more sleep would still be nice)! Maybe now we might be able to get some pictures of our sweet baby :)

Thanks again for everyones support and prayers, please continue to pray for Kyler and hopefully we can stay away from the hospital!