Tuesday, April 13, 2010

Rough Week

So, our first official day of the protocol was last Saturday. We were able to successfully feed Noah through the J-tube at a rate of 85 for the first several days and he was tolerating the meds great. We also started the Miralax for the stool impaction as well. After a few days we had to stop the Miralax as things began moving a little too quickly! Come Thursday, he began retching during the day for unknown reasons but was happy and playful. Thursday night things got worse, he began retching so severely, I wasn't able to run any feeds whatsoever. Friday things continued downward and we took him in for an x-ray to check the placement of the g-j and the location/size of the stool impaction. The x-ray confirmed the correct placement of the tube AND that stool impaction was gone! Good news! However, doesn't really explain the intolerance of his feeds. Despite the protocol instructions of nothing in the stomach, we began to run very low rates of pedialyte and calories through the g-tube and small boluses during the day as well. He still continued retching with everything that went in. We have been communicating with the Dr from New Orleans as well as his pedi and feeding team of what exactly was going on. We are just hoping this is a virus of some sort that needs to run its course and we are trying to keep him hydrated anyway we can in effort to keep him out of the hospital. Last night we were able to run a very low rate (25) through the j-tube and for the first night since Thursday, he slept peacefully. This morning, by huge surprise, he sat and ate a handful of grapes willingly on his own and then proceeded to ask for salad and chicken nuggets at lunch time! Granted, he didn't really actually eat that, but he actually ASKED me for it! We are still keeping our fingers crossed that he just has an intestinal virus and that it will pass that it's not something else brewing, or a reaction to his new meds. I am hoping he is feeling better in the next few days!
I will post more of an update on the rest of boys and pictures soon!

Saturday, April 3, 2010

Back from New Orleans!

Whew...what a week! Glad to be home!! I can't tell you how excited we are about the news that we received this week.
Tuesday - Noah LOVED the airplane! He did better than we could have ever expected on the flights. Especially when our first flight was late resulting in us missing our connection in Detroit. Thankfully, they were able to get us on another flight the same day, but we didn't end up getting to New Orleans until almost 10:30pm! The people at the Ronald McDonald house were absolutely incredible. Some of the most kind, caring, hospitable people we have ever met! Not only did they wait for us and held our room, but greeted us at the door with a new toy and Hot Wheels slippers for Noah.
Wednesday - We arrived at Children's Hospital at 7am to begin the esophageal manomatry. They put Noah under general anesthesia and removed his g-tube and inserted the manometry catheter in it's place. It went as far as the beginning of the small intestine. They also placed a tube into his nose that went down through the esophagus. While he was still sedated, they completed the motility study. The results - normal esophageal motility! They removed the tube from his nose and left the other cath in place in his gastronomy site. This caused him no pain or discomfort. After this, he was admitted into the hospital and we just went back to his room for the rest of the night. Dr Hyman let us in the room during the study and explained everything to us. Later he spent over an hour in his room with us just letting me pick his brain and ask a million questions. He is a wonderfully brilliant and kind man! One of the most interesting things we learned is that he was currently treating 2 CDH babies in the NICU with the medications we would be putting Noah on in effort to avoid the fundo/g-tube surgeries....oh how I wish we could have found this man sooner!!
Thursday - They brought us to the treatment room for the antroduodenal manometry testing first thing in the morning. Noah was awake for all of this and felt nothing. They simply hooked the end of the cath that was in place to the machine and began monitoring him while he played and watched tv. At one point we did a therapeutic meal session with him as we do at home and they continued to monitor the motility through the small intestine...results - normal motility!!! Basically this means all of his muscles used in digestion are working properly. With motility questions out of the equation, we are now able to put the plan of action into motion! Now, here is where it gets super exciting! Dr Hyman was able to determine that Noah has pain from the point the food goes into his mouth and reaches his stomach until it passes through the intestine because of nerve damage due to multiple procedures, learned pain responses from reflux, intubation, altered anatomy due to the CDH, etc, etc...He diagnosed him with a sensory disorder but believes that it is 100% fixable and he feels that using his protocol, he can have Noah completely off of tube feeds in 13 weeks!!!!!
The Plan:
1. Completely bypass the stomach for a full 8 weeks and feed 100% of his daily caloric needs by g-j tube into the jejunum while his is sleeping.
2. Start a combination of Neurontin and amitriptyline for 6 months. These drugs were originally used for pain, seizures, and depression, however, used in smaller doses, they are very effective for pain and will basically change the way pain is transmitted by the nerves.
3. At the end of the 8th week, we will start him on Megase (an appetite stimulant) for 5 days. With every day he is taking the Megase, we will decrease the tube feeds by one hour. By this point, the pain is taken away and hunger is now introduced. The Megase is only for a week and the other meds will be discontinued after 6 months.

This protocol has a 90% success rate when followed exactly according to his direction! If this is true, Noah's life is about to change dramatically!!! We are extremely apprehensive about stopping Noah's therapeutic daily meals, but Dr Hyman stressed over and over the importance of stopping all painful experiences to the stomach until the medicine has time to do its job. If Noah WANTS to eat something, we don't have to discourage him, we just aren't to push him like what we have been doing. Naturally on his own, as the pain dissipates, he will eat willingly w/o the fear of pain. We will restart his theraputic meals in conjunction with feeding therapy when the Megase is started, but between now and then we will just continue to work on his chewing and oral motor excersises to keep up on the progress he has made there. We still need to consult with the feeding team in Evansville for their thoughts on this as well, but I am sure they will be on board.

We eagerly agreed to try this approach and scheduled Noah for a g-j tube placement Thursday afternoon. During the placement, Dr Hyman discovered an area of impacted stool the size of a grapefruit in his colon. (yep, that's a whole lotta poop!) Dr Hyman believes that this is also related to his sensory disorder and that he might be holding it for fear of a painful bowel movement (sorry if this is too much info!) He felt comfortable enough to release him to go home and directed us to use Miralax daily and follow up with an abdominal x-ray in two weeks. He wanted to make sure this is the issue and there is not some sort of other obstruction or underlying issue. They finally discharged him about 8pm that evening. We flew home Friday morning at 7am, so we never even actually saw the light of day in New Orleans (except through the window in his room!) It was a very busy few days to say the least!

Since we have been home, he is doing great, happy and cheerful, and thrilled to be back home! I know that I am missing a ton of info, we just learned so much, it's impossible to put it all down. Dr Hyman just has a totally different perspective on feeding and GI isues, different from everything we have ever been told or taught. We are so very blessed to have been able to go and, if this works, I can't even begin to explain how incredible that would be for Noah!! We wanted to thank eveyone who helped us keep things going at home so that we could go! Elliot and Zane had a great time with Grandma! I don't actually even know that Elliot wanted to come back home with us! Zane is now in Seattle for his spring break with Aunt Kelly and Uncle Jeff! I can't wait to hear all his stories when he gets home!