Just never ends...or will it?

UGH UGH UGH!! Well I should know better than to know I would get a break right now. The most frustrating part is that every time I am by myself things end falling apart. Yesterday I got the most monumental news, and by myself I was.  The craziest thing is that all last week once I heard that our cross match had a positive reaction, and needed more testing to see if it was to me or to her own cells, which happens, I’ve been stressed. So I waited and could have called this weekend, but was also scared to hear the answer. All weekend I kept having this dream over and over that Ruth walked in the room and all she said was sorry and I woke up with my stomach in a knot. Well yesterday morning I got to the hospital to start our week back in Seattle, and she called. Once she heard that I was in the hospital she just told me she would be down in a minute to talk to me. When she walked in the room she was wearing the SAME outfit that was in my dreams which was just way too weird, but then the words came out that it was a go, I was a match. To be honest I didn’t expect it and either did the nurses, which shared in the tears with me since I was alone to hear it. From there I of course asked what the next step was. They were going to talk about her that day and would be at least 5 weeks till surgery to let the vaccines she got the week prior build up antibodies. So I again waited all day to hear what was said and of course no call.

So that brings me to today.  Still alone I went over to the hospital in a mission to get some answers. I asked the nurses if they had heard anything and of course they didn’t, and so I called the transplant coordinator. That is where the day started to get not so fun. See Faith had been super cranky the last few days and for once she was in somewhat of a better mood luckily. When the nurse got on the phone I asked if she knew anything about how yesterday went or what the plan was. She said they went over stuff last Monday and she was eligible for transplant, but were waiting on her vaccines to be up to date and my results from UW to come back, which they hadn’t? Ruth had told me yesterday that we had to wait 6 weeks after the MMR/Chicken pox vaccine for surgery. Well the nurse then informed me she would have to wait 28 days  from the first shot, to get another one!! SO that would be another at least 4-5 weeks past July 10^th that we would even be able to have the surgery. After I got off the phone I felt so defeated and then Dan called to tell me he took Tristan into the Dr. since he was running a temp again, and he had pneumonia. Really!? Of all the times for me not to be there.  After that news I guess I needed more so I called over to UW to see what was going on, and what needed to happen for them to give Faiths doctors what they needed to get this done. She said they were meeting on my stuff, but they were not going to give the ok till I had a meeting with the diabetes doctors since I had diabetes when I was pregnant with Faith, and may not be willing to let me give her my kidney, again news to me. So again another punch in the gut. I proceeded to call the clinic and the earliest they could get me in was July 9^th, and until that meeting was done NOTHING could proceed.

 Faiths transplant nurse called me back with a list of a few more shots that she may need before transplant but non that were active so didn’t need to wait to clear. I then asked about scheduling the surgery for 4-5 weeks past the vaccine, but until they had UW clearance they couldn’t and on top of that it may take 2 months to get coordinating surgery rooms.

So all in all more then I could take for one day. It would be easier or more settling knowing she was ok in the mean time, but she isn’t. The hemo dialysis is just not working well for her. Her BP is through the roof, she is losing weight since she won’t eat as much since there are so many restrictions on what she can have, her blood levels are not stable, and to top it off it is being away from our home and trying to financially handle it all for who knows how long now. It is all a lot to say, explain or handle but then at lunch time I sat and got an unexpected visitor.

Savannas friend from schools mom tapped me on the shoulder when we were eating this afternoon, When I turned around I was shocked to actually recognize someone besides doctors, nurses or surgeons, but then I noticed the badge hanging around her neck and knew Her daughter was here. She began to explain how she had been having headaches and the doctors just said it was nothing. Well she pushed for an MRI and found out she had a brain tumor. They did and emergency surgery in Tacoma to remove most of it but were not comfortable so she was sent up here to have them remove the rest, which they did. I wept while she talked. This day from start till now has been constant blows and knowing I have NO control on what happens, and just pray what does happen, happens quicker than they are telling me. Not for me but for my kids and Faith. I have been asked if I’m scared of the whole surgery thing, but at this point my child’s health is all that I am consumed with luckily, and ask for prayer that this is what makes this whole process happen quicker than they have seen. Again just like they said the testing would happen in months, and it happened in a week for both of us. PLEASE!!