Saturday, December 5, 2009

More questions than answers...

We've had such a busy week! Laura, Noah's OT from home, as well as other friend Laura (also and OT), came down last Wed night and observed a session on Thursday. Miss Laura did one of the feeding sessions so that Noah would be used to that routine when she saw him at home and he did great with it! Thanks again for coming guys!
Brian and Elliot came down Thursday evening and hung out at the clinic with us on Friday morning. We scheduled Noah's upper GI, swallow study, and small bowel follow through for Friday afternoon. I was so nervous, yet hopeful, that we would finally discover the reason for some of his issues. I was so proud of him, he did AWESOME for the test! Both the good and bad news of the situation, was that the tests were "normal". "Normal" meaning that his anatomy is different due to his CDH, but nothing pointed to why he is only able to tolerate such a small volume in his tummy. While I was so relieved to not see something wrong with him, it was very depressing to walk away with no answers. I seem to deal so much better with problem/solution, than "this is just the way he is". We have always been told that the anatomy of his stomach is different due to developing upside down in his chest, but I guess we always wanted to presume that, other than reflux, it would function properly. We have been trying to stretch his stomach for weeks now and keep running into the same issue. Dr Clawson said that if we continue to push the volume past his limits, he will eventually begin to associate meal times with retching and pain. For now we will continue to feed him up to his limit while we work on "plan B". "Plan B" is getting to work on finding a good pediatric GI doc that specializes in motility issues as well as chronic abdominal pain and retching issues. Dr Clawson highly recommends a Dr in New Orleans. Trust me, traveling to New Orleans isn't high on my list of ease and convenience, but we are soooo tired of trial and error at this point, I am just ready to have him comfortable and feeling well. He is doing so well with his eating at this point and everyone agrees that the sky will be the limit, if only we can find a solution to his GI issues. Dr Clawson is going to try and contact this Dr directly for his advice and opinion. As far as his metabolic workup, we still don't know 100%. We did get the blood work back and there was nothing that jumped off the page at us as far as his swelling and maple syrup smell. The inital urine came back with some protein and high PH, but we have yet to hear results on the amino acids. I really don't expect any surprises and feel strongly that this will all come back normal.
Noah is still eating 1oz of baby food and drinking 2oz of formula per session. This is still right around 25% of his total daily caloric needs. We are working on introducing a variety of foods and hope to move away from the baby food and over to thin puree of table food in the near future.
I am so so ready to be home! Overall, these past 7 weeks have gone by so fast, but as we are nearing the end I am really starting to feel the strain of being away. I am so ready to have all of my family under one roof again! I know that his schedule of eating and therapy will be crazy, but I am ready to get started!


Weylin and Tori said...

I can only imagine how frustrated you are! I really don't like the answer "this is just the way it is." There is a reason for everything and sometimes it just takes a lot of persistence and pushing to get an answer! I hope that you are able to get some of the answers. Noah has come so far! Children's Hospital in Milwaukee supposedly has some fantastic pediatric GI docs. The one we were referred to is a motility specialist and works with the feeding clinic there. Just a suggestion, since Milwaukee is a little closer than New Orleans! We miss you guys tons and are so sad that we won't be seeing you next week after all!

The Douglas'

bikurgurl said...

We love you guys and are sorry that the doctors haven't found the solutions...yet. I have faith they will. I have faith that years from now we'll be able to look back and at least chuckle because of the amazing progress he's made as a young man and adult....but while he's still working through his issues, we keep praying that God will heal him. Whether He heals him miraculously or heals him from the touch of a doctor, we have faith he will be healed!

I have a friend in Louisiana, not New Orleans, but if you go that route and would like me to reach out I'd be happy to do so.

Take care of you and give hugs to all your boys!

Love, Kelly, Jeff, Xander, and Xaveb