I started to write this out last night but then Riley decided to keep me busy until all hours of the night.... I'll get to that in a minute though. First off, We made it to NC!!!!!! Thanks to everyone who worked so hard with us to make this trip a reality. We couldn't have done it without you!
Our flight up was great. Children's Flight of Hope has been wonderful to us and we were able to quickly and easily get up here with no hassle what so ever. Let me tell you, small planes definitely aren't as bad as everyone makes them out to be. Having all the leg room you want and not being squeezed between two fat people is the best! What's priceless though is not having to drag our entire hospital and pharmacy we carry everywhere with us through security! I'm sure you can imagine how fun that is. I got to take anything I wanted and no special packing.Woo Hoo It's the little things in life that make me happy now a days.
The hotel we stayed in the first night was nice and Riley enjoyed roaming around somewhere new. The next day it was off to our business bright and early. We met Dr. Fortunato at his office for our initial appt. at 9am. He was everything we expected and more. He was very nice and patient and had a wonderful bedside manner. He listened to everything and had some good ideas. We then went to have all her Momometry testing started. They took her to the OR to do an endoscopy with biopsies and place the probe for the mamometry. Since she has a stoma they were able to use that to put the probe thru they also placed a small foley catheter beside it to use as a G-tube. Riley did great although he had some difficulty getting it to stay down straight. He laughed about it being his OCD, and something about sending it off (the probe) to have it fixed if it wasn't better next time. Little did he know.... LOL
The only problem we encountered was that the probe was not secured in place by anything except the tape we had used. Due to a lot of pressure in her belly she kept leaking out around the stoma and popping the cap out of the end of the foley. The machine was next to the bed and hooked to the probe that was inserted in her belly. It reminded me of a EEG machine. It had like 6 different lines with wave forms on them. About an hour being hooked up her dressing was soaked and fell off before we noticed the probe managed to slip out some.Not to bad though. Around midnight it happened again but only worse. It seemed to slip out quite a bit this time.So, Dr. F got woke up at midnight..... That's when we got the whole, "I've never had this happen before...." thing. The other weird part was the stuff pouring out of her stomach was really gross, unlike anything we had seen before. Everyone seemed to agree that it really looked like poop, although we don't actually know what it was. It was thick and brown though. So, he had the resident push it back in and we hooked her g-tube up to drain. This helped to reduce all the pressure she had and we were able to keep the probe in for the rest of the study although it wasn't exactly in the right place but, we do think we have enough data to make this all worth while. We were also able to give her the meds to stimulate the gi tract and watch it and we got to feed her some at the very end and it captured everything.
Bottom line is.... We wont know anything officially until he reads the entire study since they do a lot of editing and that type of thing. Anytime she was moving it would jumble the test but they have ways to pick out the important pieces of info. Just from the prelimenary glance he took he was happy since he saw some movement in her stomach so AT LEAST it's work in some fashion. The problem is we think it's just not working together properly and this is what we are hoping to determine from this test, and why we came. Just from what he has seen so far, the history he has read on her, and what we have told him he did say, he is definitely AGAINST THE SURGERY! Omg, just hearing him say this made this entire trip worth coming for! It confirmed everything Wil and I knew was right and her GI at home too for that matter. Everything happens for a reason! If Riley wouldn't have gotten that horrible staph infection in May she would have had surgery two days after. Not to mention she also had the huge blood clot in her heart and I'm sure we can all imagine how bad that could have been. He confirmed though, he thinks her pylorus is just very dysfunctional, she has muscle/nerve issues and in his experience the more you cut the more you further damage the muscles and nerves. Not to mention the chances of making her dumping issues worse are quite significant and outweigh any possible benefits.
He DOES feel she should have a separate J-tube and we need to pursue J-feeds again as he feels this is her only hope of getting off TPN. The problem there in lies what are we going to feed her! I explained this was one of the biggest problems, she has never tolerated any of the 20+ formula's we have tried. So, ultimately this will be for him and Dr. Mehta to hash out. He will get all his testing results together and then track down Dr. M and together they will come up with our plan for managing her. I can not imagine any two doctors I would ever trust more than them handling her most precious issues though! I am very happy with our new "team" !!!
She is scheduled to have her last test tomorrow at 9am. It will be having to do with autonomic issues. This is the whole reason we had to wait a month to come! I don't know a lot about the test but I know it's amazingly luck that Autonomic issues are Dr. F's area of interest just like Dr. M's thing is formula intolerance's involving sugars. HaHa, everything happens for a reason. I will update everyone tomorrow after the testing.
We are to be at the airport tomorrow at 2pm for our flight. Then we will be home!!! Hopefully we will have some time to kill tomorrow before we leave and I can update more then. Until then enjoy these pictures!
Before take off....
Riley's Stomach while doing jumping jacks. Check out
the computer screen,
Dancing in the Window after a much need bath!
My ANGEL!!!! I LOVE YOU!