Feeding clinic update...

We had a great weekend with all of the boys. Brian and Elliot came down on Friday and left, along with Zane, this afternoon....:( We were able to get out and about alot this weekend I think the boys all had a great time. I just hate it when they go!
I met with Dr Clawson on Friday and we talked alot about what they have been seeing and thinking since he has been there. She noticed a big difference in the fact that he does actually WANT to eat. He no longer needs the positive reinforcement between bites and never refuses. His main issues are endurance, volume, and his ever-present gut pain. He can only comfortably eat 4 oz before the pain starts, but again, this is a small improvement from last year. He gets soooo tired while chewing that he will actually fall asleep. They also think his small lung reserve has a lot to do with this. I have never actually thought about how much this would affect him from a feeding aspect. She said many CDH'ers struggle with this. Noah is just going to need lots of time and practice. She agreed that it was very unfortunate that Dr Hyman's approach in New Orleans didn't have more of a positive outcome, but she does agree that the g-j tube is best for him, for now. It will be a long time off before he is ready for a tube feed wean. There are only so many calories that you can fit into a 4oz meal. He still has the edema issues when he consumes the higher calorie formulas or juices, but they are experimenting with some different things for supplementation. We are going through his pallet of foods to find the ones that he does the best with as far as chewing and eliminating those that he just isn't ready for. We are hoping to go home on meals that consist of 2 soft chewable foods and one puree along with a drink. The more he works, the more weight he is losing, so we are trying to consider that as well and keep an eye on the weight gain. We will continue to do his chewing and facial exercises before each meal.
We have met some fantastic people both here at the RMD house as well as the feeding clinic. I was talking with a woman that was serving breakfast here this morning at the house, only to discover she also had a little boy born with a CDH and he and Noah are only a week apart in age! We are going to try to get our boys together one day this week.
Thanks for checking in on Noah and I hope you had a great weekend!!

Evansville feeding clinic take 2!

We are so very blessed and lucky to be back at feeding clinic for another 3 weeks! This was always kind of in the plans when we left last year, but we just weren't sure when it would happen. We are only a few days into it right now, but so far he has fallen right back into the routine. He remembered all the therapists and we've only had a few meltdowns heading to the treatments rooms. He is still retching at small volumes, even with the medications, and 4oz seems to be his comfort zone. I remember when it was only 2oz though, so there is some improvement from last year. He is still about 85% dependant on tube feeds. I think this go round we are really hoping to work on texture grading and endurance with chewing skills. Since volume is such and issue and we have learned the hard way that pushing him to fast too soon is not the way to go. It would just be great to see him eating some more age appropriate foods without tiring so quickly. Today he ate part of a waffle during one of his meals that was cut up very fine and his OT made sure every bite was properly chewed. In between bites of waffle he was fed yogurt for a break from chewing. He retched just over the 4oz mark and was so fatigued from chewing he actually fell asleep afterwards - at 9am! It just takes so much out of him! It is going to be a slow, slow process, but when we look at where he was last year, it really is amazing! They have said it is still clearly obvious that he has pain when he eats, but I do think the Neurontin has helped some with that. It was a little discouraging to see that he has only gained 1 lb from last year, but we did find out that he is now in the 50th percentile for height!
Since we are here in the summer, Zane was able to come with us this time and I have loved having him here. Elliot is home with Daddy and getting lots of love from his Grandma's during the day. We are, once again, so very thankful for their help!! The RMD house opened in January, so we are so blessed to be able to stay here this time. It is BEAUTIFUL!!! It's pretty small, only 10 rooms, but everything is brand new and it's within walking distance from the hospital! Oh and of course we don't do anything without drama, Noah was able to make his presence known the first day when he got his hand stuck in the elevator door as it was opening. Right as the words, "please don't do that" were coming out of my mouth, the door opened and his hand slid right in. The door wouldn't open or shut because his fingers slid right in. It took a few people to "unstick" him, but other than a little emotional trauma, he was not hurt.
Thanks for checking in on us and I hope you are all having a great summer! We will update again soon!

I blame it on the kids...

for my blog slacking!! Sorry that we have been so out of touch! We are still here, doing great, just soakin' up the summer. We've been busy with vacations, the lake, and all the other great stuff that comes along with decent weather!!
Noah and I are actually getting ready to head to Evansville for 3 weeks of intensive feeding therapy. I PROMISE to put up a decent update when we get there next week!! Pictures too!!!

Let's say that things haven't exactly gone according to plan, the New Orleans plan that is. As I mentioned in my previous post, about a week into the trial, Noah started having major retching and this continued for over 3 weeks. He lost a lot of weight and wasn't tolerating any of his tube feeds. I was communicating with Dr. Hyman throughout this ordeal and he became very skeptical that this was NOT from a virus and was more inclined to think that Noah is not a candidate for his trial after all. He stated to me that Noah was the first in 50 trials to have a poor reaction. He was insistant upon the fact that Noah should no longer be retching and should be able to tolerate much higher rates of feedings now that he was desensitized and on the medications. His last correspondence with me was to say that he thinks there might be something else wrong with Noah that he is not seeing, and it is too difficult to diagnose via email. His only suggestion was to add more pain meds to the ones he is currently on, one being lydicane, that would have to be administered in the hospital for safety. This is NOT something we were willing to do. He stated since we are not in the New Orleans area (or remotely close for that matter) that he wants to call off the trial and put the ball back into our local medical teams court. We were heartbroken, that he put an end to things so quickly and strongly felt that he simply gave up on him too soon. Brian and I spent the last weekend doing alot of talking and reviewing all of the things Noah has been through and tried in terms of feeding. The first thing we both agreed on, is that Noah's behavior has been out of control since we started this. His anxiety and meltdowns have been at an all time high. I think not feeling well, having significantly less nutrition, no structured mealtimes, and adjusting to new medications have all played a role in this change. The feeding team in Evansville and his OT here in town have been AMAZING at helping us troubleshoot. Dr Clawson wants to stick as closely to the Dr Hyman's protocol as we can, but within limits that Noah can handle. We have been able to work him up to his regular (pre-New Orleans) feeding rate at night (still through the J) and we have brought back 2 structured meal times during the day. He is currently getting about 75% of his nutrition through the tube and 25% orally. He is still retching with larger volume meals, usually anything over 4oz. We have discontinued the Amitryptaline but are going to continue on the Neurontin for the time being. He has had some very good days and some very bad days. He still tires very easily when eating or chewing anything more than smooth purees and tends to swallow things whole. We are still working on strengthening his jaw and facial muscles. I think we have just accepted the fact that this is going to take a long time, and that there is no easy button or magic pill that is going to take this all away. I am so very blessed to have some amazing CDH support families to share ideas, suggestions, and advice with. We are all going, or have gone, down the long and winding feeding road. As one mom recently pointed out to me, CDH kids have such complex issues, it's almost impossible to pin it down to just one thing. For now, we are sticking with what we know works for Noah and are accepting of the fact that it's going to take lots of time as well as practice, to overcome these feeding complications. I remind myself that not quite a year ago, he was almost 100% tube fed. We've learned to celebrate all the victories, not matter how big or small!

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!

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!

Lots to talk about....

We've been busy the last month or so planning some things for Noah. We haven't said much about it yet because we were still trying to make some firm decisions.
First of all, and super exciting, Noah is starting school in the fall! He will age out of First Steps this summer when he turns 3 and because he still qualifies for services such as OT and ST, he will transition to the school system. Zane's school offers a special education preschool program 4 days a week for 3 hours a day. We went over for our first transition meeting and I was able to see the classroom and meet the teachers. This is going to be wonderful for Noah! The other children in the class are very close to his level in terms of delay and special challenges. The bus even comes to pick him up and bring him home! Not to mention he will be at the same school with Zane! This being said, we have ALOT of work to do this summer to get him ready for this. His anxiety is still a huge issue and I won't get to go with him to school, so we are going to try and participate in as many activities as we can this summer to get him ready.
Our other big news is that we have been talking with a pediatric GI specialist from Louisiana Childrens in New Orleans. He had been mentioned to us a few times while we were in feeding clinic, but we truly hoped that his issues would resolve and it wouldn't come to this. After Noah's last g-tube catastrophe along with the continued pain and retching during meals and no forward movement in this area, we made contact with Dr Hyman. He has been very open with us and we have been communicating alot through email and phone. He specializes in motility, chronic pain, and severe feeding disorders. He recommended a two-day admission to Louisiana Childrens for antroduodenal mamometry, esophageal study and gastric sensations studies. This will detect abnormalities in digestive strength and coordination, and the threshold for which he has sensation in the stomach. Basically they are going to study his complete digestive system. These studies will be completed under general anesthesia. This was alot for us to digest when we first started considering it. We began talking to other GI's in our area and neighboring states, but could not find one that used they types of studies and treatment methods that Dr Hyman was using. We did get the blessing from his surgeon at U of M, who thought it was a good approach and is curious to see the outcome. It breaks my heart to see him go through another round of procedures, but if it gets us closer to making him feel better on a daily basis, maybe it will prevent further procedures down the road.
This being said, we leave for New Orleans on the 30th of March. He will be in the hospital on the 31st and 1st, and we will fly home on the 2nd. Dr Hyman truly believes that he can help Noah and we are praying this is the answer for him!
I also wanted to thank eveyone for the awesome donations you have sent us our CDH project to Mott Children's hospital! We can't wait to deliver these! We hope to deliver after our trip to New Orleans!