The official call to notify us that Lonye is listed came at 6:49pm on July 19th. It's funny how that memory is so fresh in my mind. We were told to have a bag packed. We could get "the call"any time. The average wait is right around 4 months. It was right around that time that the docs told us that Lonye needs to be using oxygen full time. He had been using it at night only. The transition was actually easier than I thought it would be. For those of you that know Lonye well, you know that he is a very private person. I was very worried that he would use the O2 at home and not be willing to use it "in public". The doctors made it clear that a lack of oxygen can and will, damage the heart, making a transplant more complicated. So, although he might not like the fact that he has to carry around his O2 tank, it's necessary. And he does it, without complaint.
The most difficult part of this process is the fact that we will need to remain in Seattle for up to 3 months post transplant. There are many complications that can occur and the transplant teams requires that we remain in the area. Shelby will be staying with Chet & Tracy (my brother & sister in law). She is very excited about the thought of staying with them, Aunt Tracy always has tons of fun things going on. She's warming up to Uncle Chet, although she's still a tad bit scared of him.
I mentioned yesterday that we have had two dry runs. Here's my recollection of those:
October 29, 2007 was a normal Sunday. I gave Shelby a bath that night we all went to bed. For whatever reason, she was not able to get to sleep. I went in to rub her back and fell asleep myself (leaving Lonye in our room). We were all sound asleep. The phone rang at about 10:40pm. I woke up a little disoriented, then realized "the phones ringing". I rushed in to our room to find Lonye on the phone. We were both so shocked, scared, excited all at the same time. He said, you'll need to talk to my wife. He handed me the phone. The person on the other end (I think it was Shawna) said, "I think we have lungs". She went on to tell me that we have 5-6 hours to get to UW. So, we were able to drive. We frantically began getting dressed, got our stuff into the car and headed to Seattle as fast as we could. We arrived there at 3:00am.
We arrived at UW and checked in at Emergency (there is no one in admitting @ 3am). We were sent up to the unit. Lonye was taken right away to Radiology for a chest x-ray. Then, back up to the intake area for pre-op tests & blood draws. It took 4 nurses 3-1/2 hours (no kidding) to get the blood that was needed. Then, we were told to wait and try to get some rest. At about 7:ooam a nurse came in and said that the donor lungs were too short and therefore not a suitable match. We headed home.
The next call came one week later. It was Sunday morning, approximately 7:30am. The phone rang, we thought it was Lee :) calling. I answered the phone. Kathy from UW said, "I think this is it, only this time there's not enough time for you to drive". We had a plan in place, if we needed to fly. So, we arrived at UW at approximately 9am. It was the same scenario, check in through Emergency, get an x-ray then upstairs to the unit. We were placed in the same room as the previous week. Thank goodness, they were able to use the test results from the blood draw of the first week. Lee took us to the airport, then took Shelby to Chet & Tracy's and then he headed straight for the hospital. In the meantime, a nurse came in and told us that "they will come to get Lonye at about 11:45am". A nurse did arrive right at 11:45. I was able to go down to pre-op (I promised to be good) with them. We were told that he would be taken in to the O.R. at about noon, the surgery was scheduled for 12:30. It was about noon. I told the nurse that Lee should be arriving at the hospital "any minute", she promised to direct him down here. A few minutes later, Lee arrived with my camera (which is why we have the photo here). They wheeled Lonye away and told us that Dr. Mulligan will find us when the surgery is complete and give us an update. We should hear something within 4-5 hours. Lee and I went to the cafeteria then headed back to the waiting area. Lee went to tell the nurse where we would wait. He came back just seconds later saying, Lonye's in his room........ WHAT????, I asked. Apparently a nurse came in just as Lonye was being moved from the bed to the operating table and said, "not today". We were sent home within an hour.
It wasn't until the next day that we were told that the donor lungs were "too wet" for transplant. The donor had been given a medication that caused them retain "massive amounts of fluids". The lungs were not suitable for transplant.
The sad thing is that the following evening our phone rang at about 9pm. Shelby immediately began to cry. She just knew that we would be going to Seattle again! Every time the phone rings, she pays very close attention. We all take notice for sure! She knows that she will be safe and she will have fun with her Aunt, Uncle & cousins. She also knows that Daddy will be in the hospital..........
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