Thursday, July 29, 2010

Week 2...

Hard to believe that we are at the end of week 2! This has been a frustrating week...Noah got sick on Sunday and it almost immediately went to his lungs. Poor guy has been coughing and wheezing non-stop. Round the clock breathing treatments and steroids for him! After still not getting any relief, they got us into the after hours clinic to discover that he has two pretty significant ear infections. They went ahead and started him on another antibiotic. The next day he was back into the Dr for a possible UTI. He is having lots of abdominal pain and what appears to be painful urination. They did a quick xray to check his bowel and all looked well. He is already on the antibiotic, so we are waiting for him to improve!
As for feeding that we know that 4 oz per meal is Noah's limit, they have really been trying to boost his food as much as possible to get as many calories into each meal. This backfired and he started to retain a lot of fluid and all but stopped peeing. At home, we boosted with things like tahini, oils, peanut butter, cream cheese, etc, so they have stopped boosting with formula and gone back to the those for now. He has lost quite a bit of weight and they have suggested we go back to bolus feeding along with his meals during the day. I am hoping that over the weekend he will start to feel alot better and hopefully start to pee off some of this extra fluid. When we go home after next week, we will still attempt to give him both spoonable and chewable foods with each meal, it's just going to be a wicked circle of weight gain and calorie balance. The chewable foods are really just for practice and most of his calories will come still come from the spoonable foods, but not necessariy the texture of a puree.
Since Noah loves to share, he was happy to share his germs with his little brother, sending him to the Dr this week as well. Same respiratory stuff along with allergies. Thank you Grandma B for taking him to the Dr! Since Noah and I are coming home next week, I think we are just going to stay down here for the weekend. It's such a long drive and with both kids not feeling well, I don't think either one would do well in the car! Zane seems to be healthy and is having a great time with MiMi and Pappy right now! I am so extremely ready for us all to be under the same roof again! I don't know why, but this trip seems to be longer than the 8week clinic we did last year!
Despite all the sickness and germs, we were able to get out and have some fun this week. The Vanderburgh county 4-h fair was going on so we went out to see the tractor pull with some of the therapists from clinic and their familes. Noah LOVES tractors, so was in hog heaven (no pun intented, there were actual hogs there too:). After so many days of tears, it was great to see a smile on his face again!
Not sure what next week will bring, I would imagine if he doesn't feel any better, we will pack up and come home early. Time will tell!

Saturday, July 24, 2010

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!!

Tuesday, July 20, 2010

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!

Saturday, July 10, 2010

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!!!