Painful update

OK, so after I posted my original blog, I left the office, picked up the boys from school, and waited for Stacy's parents to come watch them while I went down to visit. When I got there, Megan was her happy self, somewhat. I had just missed Dr. Blumenthal, her GI doctor, and everything that we thought was going to happen, did not. We thought she was going to be under observation, have tests run and examined to see if she had any viruses or sign of illness. This would be in preparation for tomorrow's lower bowel exam, and being put under. That exam was supposed to determine whether or not the J-tube would have to come out. After that, another day of observation and then maybe we could come home.

Well, that did not happen. I got there and he had just removed the J-tube after doing a check up and noticing her jujunum was swollen and irritated. Blow number one. The second blow came as we found out they have taken her off of her only medication that mitochondrial kids are prescribed, CoQ10. She was also taken off of 5 other medications including her Creatine. Your initial thought might be that this is a good thing, but it's not. This is a sign that nothing is working. Megan's disease is progressing and we are running out of options. They took the J-tube out and simply left the G-tube in. I know, that has failed in the past, but he wants to give it another shot before making the call to put the permanent IV port in. She is going to be observed tomorrow as she starts on her first G-tube feeds in at least a year. She will be on 75% IV feed and 25% PediaLite. If she does well, that will be increased throughout the day. If she digresses, they may put in a pick line (temporary port) for IV feeds, to send her home. Also, if she digresses she will not be put under for a lower bowel exam. If the exam happens, it will be on Thursday along with an MRI. Plans are fluid right now, so that may change.

So where does that leave us and Megan. The doctors are trying their best to do everything they can for her. Then he said something, that Stacy told me, that will stick in my mind fo a good long while. He said that WHEN the worst happens, not if but when, he wants to be comfortable knowing that they tried everything they could to help her. That hurt. I got a little angry with Stacy, telling her we need to be more optimistic. I apologized later, knowing I was not angry with her. I was just upset. Hearing it over and over can wear on a man. I'm trying hard, praying hard, to keep it together. Not just for myself, but for the boys and for Stacy. They know Megan is at the hospital, and they know she was not sick when she went. What they are questioning is why she is there, if she is not sick. It's hard to explain to them, that she is just there for some tests, and to see the doctors. I'm trying to keep things normal, here at the house. An d that is where I will leave it for this evening. I'm tired. It's amazing how quickly you can go from pretty optimistic to beat down, all in about 3 hours.

Good night and God bless.

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JR