Monday, August 23, 2010

Brady's eye and getting listed!

After my hospitalization and the adventure we had on the way home, I was happy that I still had my cousin, Sarah, at my house to help out with Brady. I was able to get the sleep that I desperately needed. I was on pins and needles, waiting to hear if/when I would be listed for the double lung and liver transplant. However, life still went on. On August 24, 2006 Dale (my father in law) and Sarah took Brady to his appointment in Rochester for his right eye. We thought that Mike was going to make another conformer, but to our surprise, he started preparing a prosthetic eye for Brady. Before leaving that appointment, Dale made another appointment for Brady to actually receive his prosthetic eye on September 18. This was about 4 months sooner than we had originally anticipated. I couldn't wait to see Brady with an eye instead of a conformer!!

On that same day, August 24, 2006, I got a phone call from someone at Cleveland Clinic. I had finally been placed on the double lung and liver transplant lists!! I was informed that the decision was made that the lungs and liver would all be done at once and the organs would come from the same donor. That meant that the donor had to be perfectly healthy for me to get their lungs and liver. I was told that my LAS (lung allocation score) was 35, which was pretty close to the top of the list, but it wasn't the very top. Since I was to be a multiple organ recipient, it would also move me closer to the top, we just weren't sure when.

My appointments in Cleveland on September 8 didn't bring any good news. I didn't do so well on the PFT's, I was running fevers, my six minute walk distance had decreased, and I was still losing weight. The doctors wanted to admit me to the hospital. I was told that if I didn't get the transplant soon I would be taken off of the list because I wouldn't be healthy enough to remain on the list. If this happened, I would have no hope for recovery, and of course, that scared a lot of us. With this news, I wanted to be home with Nate and Brady as much as I could because either I wasn't going to live much longer, or I was going to be gone for a while when I finally did get the transplant. Dr. Budev put me on Cipro for 2 weeks and I went back home.

When I returned home, Sarah had returned to her home because school had started. I was back to taking care of Brady by myself and that had been my biggest challenge thus far. He was getting bigger and was needing more attention to keep him occupied and happy, and I just couldn't do it on my own. My crappy CF lungs wouldn't allow it. Sometimes just changing his diaper was too hard and it made me so unhappy to think that I couldn't even care for my own son. I wanted to be the mother and wife that I knew I should be, and I was getting so frustrated that I couldn't. I was hoping that I would get the transplant and be home for Christmas and Brady's first birthday, which meant that the transplant had to happen immediately...but it didn't.

On September 18, 2006, Dale, Brady, and I left the house around 8:30AM to go to Rochester to get Brady's new eye. We went in for Brady's appointment and almost right away, Mike had the eye almost finished and put it in Brady's eye socket to test the size. Since it wasn't completely finished, it looked a little weird. Mike took it out and gave it to Michelle to finish painting it. We sat there and watched her paint the eye for a little while and then went to lunch at a small diner while it was being finished. While we were out driving around, we found Brady a new friend. It was a HUGE snapping turtle! No, we didn't bring it home, I just took a picture of it and left it where it was.

When we got back to Strauss's, Mike explained how to put the eye back in if it were to fall out and then we watched him put it in Brady's socket. From that day on, I had a new baby boy! He looked so different and even more handsome!

The next day, Nate, Brady, and I had an appointment at the Picture People to get family portraits done. Most of them turned out really nice, even though Brady was cranky because he was a little tired. We were going through the poses we wanted to order when I started crying. I was just thinking about being away from Brady when I have the transplant. It was something I wasn't looking forward to (leaving Brady) but I knew it was for the best. The best part was, the people who did the pictures asked why I was crying and we told them what was going on, and we think, because of that, the check that Dale and Gina wrote for the over $300 that the pictures cost, was never cashed!! We got all of those pictures for free. If they truly did just disregard the check, and not lose it, I thank them with all my heart for what they did.

With Brady having his new eye, and the family portraits being done, there was only one thing I wanted done before the transplant, have Brady baptized. My Aunt Kate worked on this for me and found a lady from the Clinton Episcopal Church who would perform the baptism for us. She came to the house to do his baptism on September 24. His Godparents were officially name. We chose people who have always been there for us and have one child and had decided not to have anymore because of the complications the wife had while she was pregnant. We were so proud to name Larry and Mandy Pealo as Brady's Godparents. We knew how much they would love him and take care of him if anything happened to us and no one else could take Brady. The people who were at the baptism included Me, Nate, Brady, Dale, Gina, Aunt Kate, Uncle Tommy, Alex, Barb, Makayah, Destiny, Cobey, and the Pastor. The Pastor included Makayah and Destiny by having them help our and bless the water. It was a very nice ceremony and Brady was a good boy thorughout the whole thing. We received Godparents certificates that I gave to Larry and Mandy at a later date, because they couldn't make it that day. With all of this done, I was now ready for the phone to ring, and for one of the doctors to tell me to head and meet the plane, because they had organs for me.

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