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.

Saturday, August 21, 2010

Released from Cleveland Clinic

While I was in Cleveland in the hospital, the doctors scheduled a date to talk about my case and how they were going to present it to the board. They were to all gather together on August 4, 2006 and decide if they could do a double lung and liver transplant. If they couldn't do both, in the very least, I would need a double lung transplant as soon as possible. After the meeting, it would be about 10 days before we would hear from the board.

At this point, the biggest concern, from the doctor's point of view, was infection control. The infectious disease doctor was concerned about all of the antibiotics that I had been on since February 2005. Since that date, I had pretty much been on IV antibiotics for 3 weeks and off for one. Another doctor said that if they could keep the infections at bay, he wasn't too worried about weening me off of them. But, if infections keep setting in, and I have to go on stronger antibiotics, it could be a really bad thing.

On a good note for that day, I talked to Ally (girl I saw on Deal or No Deal) for about 45 minutes. It was good, I needed that. She was sweet and she answered all of my questions.

On August 4, 2006, we were told that there were about 50 doctors, nurses, coordinators, case workers, etc. in the meeting. They decided unanimously that they would go ahead with the double lung and liver transplant. The next step was to go through the Ohio State Board, but the doctors didn't see a problem with getting through to them, because the hospital requirements were higher than the board requirements. So, we took this as an almost definite yes, that I would soon be listed.

I was released from Cleveland Clinic on August 8, 2006 to finish IV antibiotic treatment at home and was to return for follow-up appointments in September. My Mom and I left in Grandma and Grandpa Croop's vehicle and almost immediately, it started making a weird noise but Mom wasn't sure what the noise was. We had just gotten over the Ohio boarder, into Pennsylvania, when we had to pull off the road into a rest area because the noise was worse and the vehicle was pulling to the left with the steering wheel turned completely towards me (the passenger seat). When we got out of the truck, it was smoking and the driver's side front tire was about falling off. We also noticed that the oxygen tank, that was given to me from the clinic, and was supposed to last until we got home, was almost empty. The total drive was about 6 hours and we were only about an hour into the drive. The oxygen wasn't going to last.

We tried calling Grandma and Grandpa, but Grandpa wasn't around and Grandma was in Canada with Aunt Kate and Uncle Tommy. I called Nate to let him know what was going on and Dale and Gina gave us their AAA number to try to get help. AAA would not help us because Dale and Gina were not with us and it wasn't their vehilce. Then, I ran out of oxygen. It was the one thing I desperatley needed, and it was gone.

I dialed 911 and told them that we were broke down, I have Cystic Fibrosis and was being evaluated for lung transplant, and I was out of oxygen. They sent EMT's and an ambulance. The EMT's got me hooked up to some oxygen and took us to Brown Memorial Hospital in Conneaut, Ohio so I could stay on oxygen until we could get a rental car or until someone could come get us. Grandma and Grandpa's vehicle was towed to a repair shop, where someone would pick it up when it was fixed.

When we got to the hospital, my Mom tried getting a rental car, but most places were closed, and the one that was open was 30 miles away, in PA, and they wouldn't travel state-to-state to bring a car to us. The ER doctor (Dr. Namey) did everything he could think of to help us. He tried to help Mom get a rental car, he got me in the hospital and hooked up to oxygen quickly, and he found a way to get me some food even though the cafeteria was closed. He was really a wonderful man, and eventually, we learned why he was so willing to help. He told us that he had a CF patient a few years prior who eventually got really sick and passed. He wanted, more than ever, to see that I was okay and that I made it out of there safely. Mom eventually got Barb (my sister) and her husband to come get us. In the meantime, Mom slept in the waiting room and I was on a stretcher in the ER. Dr. Namey kept checking on me to make sure I was okay and I slept on and off.

My sister and Corey got to the hospital around 2 in the morning and I finally made it home safely at 9 in the morning. What was supposed to take only six hours or so to get home, ended up being an 18 hour trip! I was exhausted, but glad that things worked out. I dreaded another trip to Cleveland, but I knew that it would eventually happen.

We still hadn't gotten in contact with Grandpa by mid-morning, so I okayed the repair shop to fix the vehicle and I gave them my credit card number to pay for it. The vehicle needed new ball joints, the axle broke, and it needed an alignment. It came to just over $1,000 for the repairs. All of my and my Mom's stuff was in the truck and we didn't get it back until that Friday when Mom, Nate, and Alex (Nate's cousin) went to get the vehicle.

It was all quite an adventure, that I didn't care to take again. I was happy to be home and see Nate and Brady. I felt better after my admission to the hospital, but I knew that it would take the transplants for me to really feel better and get back to living my life. I continued on my antibiotics at home for another week and I scheduled my next appointments in Cleveland for September 8. The doctors were positive that I would be listed and have the transplants by that time...but it just wasn't to be.

Friday, August 20, 2010

The months following the birth of Brady.

This entry is taken from my journal, written August 4, 2006....

"It's been about a month since I wrote in here and Brady is doing great. He now weighs over 15 pounds and is over 25 inches long. He has been growing so fast. We eventually found out that he does have a right eye, but it's underdeveloped and he will not be able to see out of it. He goes to Strauss Prosthetics in Rochester for work-ups for a prosthetic (glass) eye. We have also been told that even though he has a couple of things wrong with his left eye, his vision should be okay.

Anyway, for his right eye, Michael Strauss put that whey call a conformer in there to help the socket form around the eye so that a prosthetic will fit properly when they make one for him, which should be when he's about a year old. Brady got his first conformer in April and a month later, he started pushing it out of his eye all the time. We went back to Strauss in June and Michael made another conformer that was more than double the size of the first one. In the beginning of July, Brady started turning the conformer the wrong way in his eye and made his eye really red and irritated. We were told to take the conformer out and leave it out until the new one could be properly fit.

He had an appointment on July 14 to go under anesthesia so that Michale could make a mold of his eye so they can properly fit a prosthetic. The whole procedure took about 15 minutes. Dr. Merriam was there to get a better look at Brady's left eye and he determined Brady's vision in that eye is fine for now. We have the Oneida County Early Intervention program working with Brady on his vision and also doing occupational therapy because he wouldn't open up his hands or reach for toys. Jamie is his OT and she is excellent with him. Brady's hands are opening more and more, he's learning to roll over, and he's "tracking" more things with his eye, especially toys with lights. He's so smart and his smile brightens my day. He's beginning to look more and more like his Daddy.

As for me, I feel like I have been on a roller coaster ride since I became pregnant with Brady. I cannot believe that it was one year ago that we found out that I was 9 weeks pregnant. Anyway, since he was born in January, I have had a lot going on. I started going back out to Cleveland for more tests in March. Those tests were for my lungs and I had to go back to Cleveland in April for more tests for my liver. I took copies from the PFT's in March and sent them directly to the disability office so they could see the current results of my lungs function. That must have helped, because I was approved for disability in the beginning of April.

While I was in Cleveland in April, not much happened. My Mom came out there with me that time. We were watching Deal or No Deal on TV and there was a girl named Ally on there who had just had a double lung transplant at the Cleveland Clinic in January. She, like me, also has Cystic Fibrosis. She looked really well for only having the transplant in January. I so want to feel like that again! Ally ended up winning $124,000!!

In June, Brady went to the genetic doctor and everything is fine genetically. They did chromosone testing and that came back normal. I joke with people saying that Brady is the first in the Prince family with papers stating that he is "normal." This is the appointment where it was determined that he could benefit from Vision and Occupational Therapy. I was also back out to Cleveland in the end of June with my Aunt Sally and my lung function was down from March, but I still wasn't placed on the list. They wanted me to come back out during the time that Brady was going to have his eye procedure, and there was no way I was doing that, so I cancelled those appointments and they were re-scheduled for August (this month).

Throughout the summer, Brady has continued to do well and is getting bigger. He has had a few more appointments with his pediatrician and eye doctor, and Jamie continues to work with him for occupational therapy. Sarah, my cousin, has been staying with us to help me around the house and with Brady. I'm getting too sick to do it all by myself during the day. She has been a great help so far.

In the end of July, I was admitted to my CF hospital in Syracuse for coughing up a lot of blood and running fevers. Dr. Sexton didn't feel comfortable doing the embolizations in Syracuse anymore since my lungs were getting worse, so I was flown, by medical flight, to Cleveland Clinic on August 2, 2006. My Aunt Sally had already headed out there and was there when I got there. She kicked butt and got the doctors moving on a lot of things. They had their huge meeting to talk about my case and they sent my case to the Ohio Board for approval to be listed for the transplants. The Interventional Radiology team in Cleveland did the embolization to stop bleeding in my lungs, and after a few days, the blood was gone again."

So, now you can see some of the stuff I started to go through as I was getting sicker. Taking care of Brady was not easy. I had too many infections, I was couging a lot, bringing up a lot of mucus, and overall not doing well. It was only to get worse from here.

Thursday, August 19, 2010

Newborn Brady! You may need tissues.

I know that it has been over a year since I have written on this blog. What can I say other than I have been really healthy and busy since I had my bilateral lung and liver transplant in 2007?! I am going to continue where I left off and talk about immediately after Brady was born and the months following.

After the doctors finished "tying" my tubes and closing me up, I was taken to recovery. There, the nurses monitored me to make sure that I started to heal and that I had no fevers, bleeding, heart issues, and whatever else after this major surgery. I had family memebers come in to tell me they had seen Brady and that he was doing great and that he was a tiny, handsome baby who looked like a little man. My sister, Barb, had taken some pictures with her digital camera, so other than seeing Brady before the doctors took him away, my first time seeing him was in a camera screen. I cried, I wanted to hold him so bad. He looked perfect, he was my and Nate's creation, and I wanted to hold him close to me and never let him go. Yet, I had to wait, while everyone else got to see him.

Once I was recovered enough, I was taken to the NICU to see Brady. He was so precious and looked so fragile. He was breathing without the use of oxygen or a ventilator, which is great for being seven weeks premature. I got to hold him for about 10 minutes before I had to put him back in his little bed, with the lights that were keeping him warm and keeping the jaundice at bay. He was so tiny, I had never held a baby that tiny before. I couldn't believe that he was finally here and that things turned out much better than expected. I cried, any mother would. I'm actually beginning to get teary just writing this because I remember the feeling all too well. Some of it was fear of the unknown...I didn't know what was going to happen to me, if I would get listed and get the transplant on time and get to be a Mother, or if Brady would just have Daddy to love and care for him. Either way, he would be loved by many, many people.

After just staring at him for a little while longer, I was taken to my room to get some rest. I know that I layed there, but I don't remember if I slept or not. I remember that it wasn't much longer and the nurses had me up and walking around. They thought that they would just have me walk a few feet, but were surprised when I walked around the whole maternity ward. I wanted to get stronger, I knew that I had to. When I got back to my room, I was starving from not being able to eat. I ate some food and wanted to go back to the NICU to see Brady. I didn't want to be away from him. After a brief visit, I went back to my room for the night, and fell asleep crying. Not because I was worried about Brady, but because I wanted him by my side like all the other mothers had.

The next morning Brady was not in the same nursery. He had been moved from critical care to a "less care" nursery in less than 24 hours! Sometime during my visit with Brady, Dr. Sexton came in because I wasn't in my room when he went to check on me. He looked at Brady and got teary-eyed. I'm sure he was happy that things turned out so well, when just a few months earlier, he had told me not to go through with the pregnancy. I spent as much time as I could with Brady in the next couple of days. People were allowed to come see him but we could only have 2 people at a time in there. The only people allowed to hold him were parents and grandparents, and it wasn't even for more than a few minutes at that. When in the nursery, you would walk in and see Brady in the "incubator" with this little cloth thing over his eyes that looked like sunglasses, to protect his eye from the lights. He was hooked to monitors and had an IV in his arm for nutrients. He wore only a diaper, so clothes didn't get in the way of the monitors and IV. He looked like a little old man, with wrinkly skin, who had room to grow. He was tiny and he was handsome.

Over the next few days, Brady continued to progress, and I continued to hold him when I could, change his diaper when allowed, help with his feedings (which were done by putting a tube down his throat and letting the formula slowly run in, called lavage), and staring at him when I couldn't hold him. He was perfect and I didn't want to leave. That Friday (the 13th no less), just three days after Brady was born, I was taken into Interventional Radiology to replace the port that I had in since August 2001. Both the upper and lower loomens weren't working because it was clogged and we couldn't get the clog cleaned out. The old port was taken out of my right side of my chest and a new one was put in the left side.

I was discharged from the hospital the next day but Brady had to stay there until they felt he was doing well enough to be able to be transported by ambulance to our hospital in the Utica area. I took a little cloth that had been with him in his bed so that I could have something of his to keep close to me as I had to leave him behind. I fell asleep crying that night, with the cloth in my hand. I made the 45 minute trip back to Crouse every day to see Brady, until he could come "home." I think I spent the next few days just crying on and off because I missed Brady so much and wanted him closer to me.

After what seemed like an eternity, he was transferred to Faxton St. Luke's hospital on January 18, 2006. He stayed in FSL mainly for weight gain, jaundice, and he eventually needed to learn how to suck on a bottle. It took a while for his jaundice to go away, and at one point, they tried to get him to suck on a bottle, but he wasn't quite ready for it yet. All the while, we continued to try to see what was wrong with this right eye, because it still wasn't opening. We also found out that he has retinal coloboma (mishaped pupil) in his left eye which would effect his vision but we weren't able to tell how much at that point. It was about a week before Brady was realeased, that we were finally able to see that he did have an eye in his right socket, but it was very small because it didn't form all the way, and he would never have sight in that eye.

The day finally came where he was doing really well with all of his bottle feedings and he was able to come home. After a month of being in the hospital, Brady Michael was welcomed home on February 14, 2006...Valentine's Day! He weighed 5 pounds but he was still tiny. It was so weird not seeing Brady hooked to monitors/wires. My friend Mary came to the hospital with me to pick him up because Nate had to work, and I had to have someone with me. We got him home and it felt so good!! I was so worried that something would happen, that I kept checking on Brady constantly when he was in his crib. That first night of him being home, I didn't get much sleep because he needed to be fed every 3 hours and even when he was sleeping, he made all sorts of noises, which kept me awake. Overall, he did great coming home and he was the most perfect baby anyone could ask for.

Within the next month, we had visitors come and go and Brady continued to do well. I, however, was a different story. I was getting sick frequently and was on IV antibiotics more often than not. With having a new baby, and me having infections constantly, Nate and I decided that it would be best that I do not return to work. I ended up resigning from my position at the House of the Good Shepherd in the beginning of March and I filed for disability. I started going back to Cleveland Clinic for transplant evaluations near the end of March. Pulmonary Function Tests (PFT's) showed that my lung function was down to 20 percent.

When I returned to Cleveland, it was confirmed that my lungs were getting worse and I could tell, because I could feel the effects of it. The lung doctor that I saw that time, was Dr. Mehta. He told me that he was happy that I had a baby. I was stunned to hear a doctor say that to me, so of course, I asked him why. He told me that "Having a baby and a c-section shows how much stress your body can handle." The appointments did not bring much good news about my health, but I was still not put on the list because there was more testing to be completed. I would continue to go to Cleveland every 3 months or so, and would have to complete more tests there and at home, and then I would be able to be listed. I was so ready to be listed, get the transplant, and be the Mommy that Brady deserved.