Alex and Maddy

Alex and Maddy

Sunday, April 21, 2013

Testing

I realize I never updated on Thursday about Alex's testing. It was a much harder test then we had anticipated. As I had mentioned on Wednesday while Alex was under anesthesia he had probes placed throughtout his stomach and small intestine. Early Thursday morning those probes were hooked up to a computer that monitors the pressure and thus contractions in the GI tract. Alex was hooked up at 7:30 to start the test. At that point we had to stop draining his stomach like we always do and have done for the past 5-6 years. The first 3 hours of the test was supposed to be watching his GI tract at rest. Alex was extrememly uncomnfortable. This should have been the "easy" part of the test, yet Alex lay there with tears running down his face complaining of pain. Dr. O had the GI nurse tell us to go ahead and drain his stomach again. They also discovered that Alex had displaced a tube the night before when he had gotten sick and it was in the opening of the esophagus. They had to pull that tube out about 10 cm. Alex was so upset and worried about this, but he was a trooper as we got the tube correctly positioned.  After that he was okay and the rest of teh 3 hours went without incident. At 10:30 they gave Alex the first of 2 medications (erythromyocin). This is a medication that some mito kids and Alex specifically don't do well with. We had tried it in the past with probelems, but Dr. K had okayed a one time dose to see if it would help his motility for the testing purposes. Several minutes into the infusion Alex became violently sick adn was puking bile over the end of the bed from laying flat. He was also having trouble with choking because he wasn't allowed to sit up. He was miserable. He was shaking uncontrollably for over an hour after this medication. I checked in with Dr. K who felt like it was probably from the medication, but seeing as it was just one dose it should be fine. I was shocked as Alex is just not a puker at all. Once that med was done they administered the second medication (octreotide) which also caused major wretching and vomiting. We were glad when the medication portion was done! He was given about 45 minutes to be sure that the medications were out of his system and then the plan was to give him 200 cc's of formula over 30 minutes into his stomach. Any of you who have followed us for a while know that we don't use Alex's stomach because it simply doesn't work. After the morning we had had neither the nurse or myself were optomistic about teh feeding portion. We started the feed and watched as Alex became more and more bloated and uncomfortable, but never vomited. They watched him for an hour after the feed and then we could stop the test. We just needed to put in a new tube and we could drain his stomach again. Unfortunately, it was not our day and his tube wouldn't fit as his stoma had closed around the smaller tubes used for the test. We had to stick a catheter in temporarily while the nurses went to get a smaller button to place. He was certainly happy when a tube was in place and we could drain his belly again. As soon as we hooked up the ferrell bag (drain) all the formula we had fed 2 hours earlier came out. Dr. O came by that evening and let me know that he would have full results for me early this week. The one thing that definitely jumped out at him is that Alex never had stomach contractions the whole test except when we gave the erythromyocin. Even the feed didn't generate any contractions which explains his extreme bloating and lack of vomit. I have to wait to figure out what else we learned.

Last night, I was lucky to get to spend the night with some girl friends. Alex also had his friends over. It was a fun filled evening. I had a Lia Sophia Jewelry party. I have decided to leave the party open until next Saturday. If any of you that aren't local or couldn't come would like to look at the catalog i will post the link here. There jewelry is really pretty adn affordable. If interested you can go to
www.liasophia.com/seejengo.  Click on Browse Jewelry. Then click on find Hostess adn search by my name. Once I am listed as the Hostess you can click on the spring summer catalog. There special right now is by 2 full price items and get up to 4 at half preice. The cool thing is that you can use your least expensive items as the full price and your more expensive items as the half price!

I will update this week when I hear from Dr. O with the remainder of the results.
Ali

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