We've known for weeks that our Monday in Cincinnati was going to be rough, but nothing, I repeat NOTHING, could have prepared me for today.
I woke up early this morning to prepare for the day ahead. Avyn is still not feeling well (double ear infection, cough, snot factory, etc.) and needed another breathing treatment and her antibiotics. Paul helped me dress the kids, and took London downstairs for breakfast while I finished packing a toy bag to occupy Fisher during his millions of appointments scheduled for today. We made it to the hospital, said some prayers, and Fisher and I gave hugs and kisses to everyone and set out on our way to "concourse C." The Cincinnati Children's Hospital is ginormous. It is it's own city, split up into at least seven buildings (that I know of), with each building having at least six stories, plus basements. Fortunately, the program scheduler made impeccable notes on our itinerary and we found our first destination with very little trouble.
I almost wish that we had gotten lost and missed the entire GI appointment entirely. The first couple of hours were a complete whirlwind, chaos personified. We met the doctor's nurse, gave an extensive medical history, and proceeded on to meet the program's research specialist. We were asked to enroll Fisher into one of their research programs, which I happily agreed to - hey, anything we can do to make this horrible disease a little more hopeful - and signed the consent forms. Next I met with the EGID (eosinophilic gastrointestinal diseases) program coordinator. We spoke for a while about the parent education class on Wednesday, and then it was time to meet Fisher's new GI. Since Fisher will see a few doctors this week, let's call the GI "Dr. A." Dr. A was great. Very personable, VERY thorough, and a little scary with all of his medical knowledge on eosinophilic diseases. He also mentioned that Fisher will most likely need speech therapy for his food aversions. Great. More therapy. Physical therapy twice a week isn't enough, evidently. After our visit with Dr. A the nutritionist stopped by to get a little more information about Fisher's current nutritional habits. What a mess. I wasn't prepared to meet with him until Friday, so I hadn't properly briefed myself on the sixteen food avoidances we are currently following, as well as the other half dozen foods that Fisher WON'T eat. Poor nutritionist. I'm not sure I was too much help to him, but promised I would be on my game at our meeting Friday. He was very gracious, and even made a remark about my information being very helpful. Nice guy. After all of this, Dr. A's nurse informed us that we were running late for Fisher's dexa scan, and that we needed to move along to another building. So, off we went.
Dexa scan - check. Potty break -check. Cart Fisher off to pre-op - check. Cry in the corner for a few minutes while Fisher is watching Meet the Robinsons while awaiting being wheeled into the OR - check.
Dr. A came to talk to me right after the procedure as Fisher was recovering in post-op. Not good news. Not good at all. Because of the wonderful magic of technology, he was able to hand me a semi-gloss 8x10 of Fisher's esophogus. He explained that the images showed Fisher's esophagus to have significant narrowing and thickening, something you don't ever want to happen to your esophagus. Just imagine trying to push food down the middle of one of those swimming pool noodles. Doesn't work too well, does it? That's Fisher's esophagus. That's why it takes him such a long time to eat. That's why he has very little appetite. That's why he complains that he's hungry but won't eat the food that you give him. He's literally afraid to eat.
We wait for the anesthesia to ware off, Fisher downs a couple of popsicles, and we are off to have a bone age study in radiology. We finish up and call Paul for pickup. He's running a little behind schedule because Avyn's fever cropped back up and he had to give her some Tylenol. Piece of cake, like trying to convince an adult to eat dog food.
We grab dinner, bathe children, and settle them down for bed. I proceed to tell Paul about who said what about which medical thing, and he hands me one great piece of news for the day - we get to move into the Ronald McDonald House tomorrow. Thank you, God. Just when I thought the world had given up on us altogether, something good. And a great reminder from an even greater friend today...Fisher may have a lot going on medically, but he is so fortunate and blessed to be receiving the BEST care in the COUNTRY right now. God provides. Our family, friends, and church family got us here. They took it upon themselves prayerfully and financially to make sure that Fisher receives the best medical care possible. I cannot offer enough thanks to everyone helping us. My baby's quality of life will be a little better because of you. God bless you.
Monday, February 8, 2010
Posted by What can I say? at 6:58 PM