Game Plan Time

First I apologize for not posting anything last night, I know alot of people are wondering what's next. We actually had Adam's work company dinner last night & didn't get home till later, so I was exhausted & went to bed! They had it scheduled in December but we were still in the hospital so they so kindly changed it to January, go figure we're back in here. We didn't want them to cancel again, but we also didn't want to miss out! Thanks to Adam's sister Shannon for coming to sit with Logan, who was not a happy camper, poor kid needed a new iv put in and they wrapped his hand that he likes to suck on (this made for one miserable baby!). Unfortunately we ended up being late because we waited until 5:50pm before a doctor finally came in to see us! So, Adam wasted another day of just sitting in the hospital waiting to speak with the doctor and they didn't come till dinner time. We also were about 40 minutes late for dinner! BUT, at least we have a game plan!!

Dr. Brille sat down & chatted with us. We found out that "pyloric spasms" isn't actually the term they use - which I kinda figured since you can't find it when you google it! They are diagnosing Logan with what's called "Gastroparesis", which you can read up more about here: http://voices.yahoo.com/pediatric-gastroparesis-7003994.html

Bonnie Slaa came to visit us yesterday afternoon for which we are so grateful! She's a hardcore researcher like us when it comes to things like this, she goes to school here at Mac. She was able to research some things through the Mac library for us on her laptop. We found out alot of interesting things about this syndrome, we also discussed proper treatment for it. Our options aren't that great. Obviously the first is by using medication. He is on the max dose of domperidone and he could go on something a little higher up call Erythromycin which does similar to what the domperidone does. We decided to skip this step seeing as Logan should have had this dealt with 3 months ago already so we need to move on to a quicker treatment for Logan. We will be starting with the botox injection into the muscle. Dr. Brille will put Logan out and do another endoscopy (scope) to go through & find the muscle, he will then inject a needle into the 4 corners of the muscle in hopes that this will relax the muscle and it won't be so spazzy (sp?!). He has never done this procedure before, and although I fully trust Dr. Brille to be a great doctor, it makes me a little nervous that Logan will be his first. Botox, being used for things other then cosmetic, is just becoming more recent and there aren't super high perctenage's of this actually working. If it does work it can last anywhere from 2-6 months. Our hopes are if this works, maybe by the time he needs another injection he may grow out of this. We also had the option of giving him the g-tube at the same time since he is put out anyways. The reason being because if after 2 weeks Logan still can't handle the high volumes then he will need a gtube anyways to feed him on continuous until we can get his weight up & things are getting better. That means coming through the E.R. and going through this whole rigmarole again and waiting 2-3 weeks to have a gtube surgery. It will not be fun and given everything we've been through the last few months the doctors totally understood if we want to do this all at once. In the off chance he doesn't need the gtube it will be a matter of taking it out and he has a scar for the rest of his life. This was not an easy decision for us but after much talking and praying about the matter we've decided to go ahead with it all at once. Adam pointed out that had this been Olivia, maybe we'd be hesitant as she may be self conscious about a "second belly button" scar when she's older, Logan will probably look at it as just a cool story to tell! :) We also really feel in our hearts Logan will still need the gtube as there are not great results in botox working. There is a really nice mom here who is willing to show me her little ones gtube and talk about how it works, how to take care of it, etc. I will get a head start on learning about it before the nurses teach us when we go home!

I also spoke before about the surgical option of doing what they would do if he had pyloric stenosis. It involves cutting through the muscle to widen the area and let food pass through. The risk with this procedure is that we have no idea how weak that muscle is. If they cut it and it opens too wide Logan could get a condition called "gastric dumping syndrome" - a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. People with this syndrome often suffer from low blood sugar, or hypoglycemia, because the rapid "dumping" of food triggers the pancreas to release excessive amounts of insulin into the bloodstream. This type of hypoglycemia is referred to as "alimentary hypoglycemia." Unfortunately if that happens there is no way to fix the widen hole and we run the risk of Logan getting diabetes. This option is our very LAST option. If nothing else works for Logan and he needs this then so be it, but Adam & I are trying very hard to avoid this. It sounds like we & Logan already may be dealing with alot & we don't need this on top of it. We are also going to be continuing to work with Dr. Matt at New Life Chiropractic as he has treated a baby before with this same condition seeing great results! Because this is something neurological (Logan isn't getting the right messages to the brain to get his muscle to function properly), there are high hopes that over the next 3-4 months Dr. Matt can work on those nerves along the spine to correct them. So thankful for all the different medical care that God has given us to help take care of our bodies & heal!

So, as you can see we had to make some hard decisions yesterday, and this wasn't easy on us. We prayed to the Lord for wisdom & feel confident with the decision that we've made. Now we wait. Logan's name is on the waiting list for surgery this week. When a spot opens up they will put his name on the board, he will be NPO (no food passes orally) for I believe at least 8 hours and we will proceed with the surgery. If Logan does well after 1-3 days they will allow us to go home! If not then I will be staying here longer with him until they decide what to do next. Dr. Brille from GI &  Dr. Flagyl from general surgery will be working together to complete the botox & the gtube. I'm tearing up already as I write this because I just want it to be over with (I'm not good with big procedures like this, it makes me nervous!). We pray the Lord grants the doctors wisdom as we entrust Logan into their care, but ultimately we know that Logan is in the Hands of our Great Physician! What a comfort it is to know that though we may not be able to be with Logan through this, God will never leave his side. "Whenever I am afraid, I will trust in You. In God I will praise His word, In God I have put my trust; I will not fear..." - Psalm 56:3-4a

Another long post I know but I'm trying to be thorough, & I think I've covered everything up until now. We will let you know as soon as we do when the time for Logan's surgery will be. We ask that you continue to uphold our family in your prayers. Thank-you for all the continued support that is shown from each & everyone of you. We are so thankful to the Lord for the blessings of family, friends & our church community!