Aaron's Hyper IgM Journey

Tuesday, November 29, 2011

Our First Day in Cincinnati

Wow! What a day. We woke up, got ready and took Michael to the airport to go to work. Aaron and I stopped at the grocery store to get him some milk, water, and juice. We then headed to the hospital. The hospital is huge with several different connecting buildings. The parking garage is a maze to find the right parking area for the building you are going in to.

Our first appointment was for lab work. However, that was only 10 minutes of the 2 hour appointment. The first person who met us was the transplant financing/billing representative (they need to make sure they get their money). They said it is good that we have Michael's insurance for Aaron because mine has a lifetime maximum of one million dollars and Aaron would probably be dropped before we left the hospital. Aaron is an expensive kid, but definitely worth it.

Next we met with the transplant coordinator, Mat. He is so nice and puts up with me and my endless questions and concerns. We really like him!

Finally, Aaron had his blood drawn. They must have taken nearly 20 tubes. A little frightening, but they said it was only about an ounce of blood. Aaron fussed a bit, but overall was a tough kid. He was rewarded with 2 Thomas stickers and apple juice.

After this appointment, we went back to Ronald McDonald House (RMH) for lunch. I put Aaron down to nap. Meanwhile, I took our food to the kitchen. I ended up locking him in the room by himself. By the time I was able to get another key and into the room, 15 minutes had passed. Thankfully, he was still relaxing in bed with his blanket and pacifier (his favorite things right now).

We went back to the hospital for a pulmonary consultation which also took about 2 hours. This was an initial evaluation for the bronchoscopy with sedation that will occur next week.

When we returned to RMH, we got great news. We had been upgraded to the isolation suite. These rooms are usually given to transplant patients that require strict isolation. We are allowed to have food in these rooms and there is a second bedroom. The second bedroom is great since Aaron is used to sleeping in complete darkness by himself.

I spent 2 hours packing up our things and making several trips back and forth between rooms. Aaron hid one of his shoes and ran around the Ronald McDonald House with just socks on. Thankfully, I found it later in a suitcase. He also pushed the "help" button in the elevator and I had to explain to the Cincinnati Fire Department that all was ok. Aaron is so full of energy and unable to find an outlet. It is too cold here to let him out to run.

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