Wow what a whirlwind three days! We were blessed beyond belief; we walked in peace and Joy! Even though we walked in peace things were hard; imagine taking a child in a wheelchair with four medical machines, liquid medicine and a feeding bag through modern day airport security that in and of itself is a feet to accomplish. The airport was very great at accommodating our needs. Once we arrived at our hotel in Boston we realized we left a very important cord in a bag on the airplane; we almost had to head to the hospital early. But thankfully in less than a half hour Dustin was on the phone with someone who went onto the airplane found the cord and brought it straight to us! We arrived at Children's the next day for Noel's appointment. I have to say there was a strange peace and familiarness about walking into a Children's Hospital. I felt in my "world", like I can do this; it's crazy I feel more comfortable in a hospital than an airport. We meet with the G.I doctor, Dr.R, he was amazing! He explained so much to us, more than I've ever heard before. He told us that the chances were high that there would be nothing physically wrong with her stomach and intestines but she could be getting the wrong sensations sent to her brain. He said the test he was going to preform would tell us exactly what was happening in her stomach and intestines. She was admitted to the ICU for the night and the procedure was scheduled for 1:00 the next day. Around 12:00 the next day everything was going as planned until the anesthesiologist wanted to see Noel's records from Denver; giving anesthesia to people with Muscular dystrophy is very risky and she is at risk for complications. I appreciated the cautiousness of the doctor, but in getting the records it delayed her going into the O.R. 4 hours to which we were told we wouldn't be able to make our flight out the next day. I wasn't surprised; in booking our flight home I never thought we'd actually be heading home on Wednesday-it was just wishful thinking! I was on the phone in minutes talking to a dear friend about helping change our flight. After her procedure the doctor assured us the testing would be complete in time to catch our flight. We had to trust the Lord that either way it went He would be in it.
In the O.R. Dr.R put two tubes into Noel: one into the hole in her stomach where her g-tube goes, the other went up the other end into her colon. At the ends on the tubes there were 8 sensors each for a total of 16. The sensors were then hooked up to a computer and each sensor was able to measure the pressure and electrical impulses of her intestines. Technology is so amazing! The next day, Wednesday, they began the testing. They gave Noel food and other medications to monitor what her stomach was doing. After a 6 hour test the doctor came back to tell us the preliminary results; it will be weeks before we have the actual results. Noel's stomach and intestines work! Mechanically everything is doing what it is supposed to. The problem is her brain. She is getting the wrong sensations sent to the brain which tells her that she's in pain. These are the best results we could have found. She does not need a transplant, she doesn't need surgery; what she does need is medicine. Up until now we've been treating her stomach with medicine to help it function correctly. But what we really need is to give her medicine to help her brain; I don't know yet what she'll be on but Dr.R talked about mild doses of antidepressants. She needs more serotonin in her stomach; ironic cause serotonin is happiness-joy! She needs more Joy!! (Don't we all?) This will be a long process of blocking the pain sensation from the brain and then re-teaching her that the sensations she feels when eating are normal and not painful. She can be healed!
This trip was amazing I could feel God's fingerprints over every aspect. I was beyond prepared for every possible what if; a friend put it this way: It's like I had to pack a separate bag for every possible what if, and since I didn't have to open all the "What if bags," now what do I do with those bags? In five years of this journey this is the only time things have ever gone according to plan. Even as we drove to the airport I still wouldn't let myself think we'd actually be home, ready to celebrate Christmas as a family. However, I do have to say that even if I would have had to use one, two or even all of those "what if Bags" I would have still felt God's fingerprints over everything. God is not just there when everything is going smooth, good, according to plan. He is there is the hard times, the unexpected, the worst case scenarios. God is good all the time. I am so blessed beyond belief; I went to Boston with Hope and came back with an answer-JOY!!