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!!

My work up day

Well I am sitting here finally able to see straight without the room spinning or the overwhelming urge to throw up. Today was day two of testing for the work up on Faiths donor tests. Yesterday was somewhat easy but not the case today. It started out with of course fasting and seems to be when you can’t eat is when you are the hungriest.  First on the agenda of the numerous appointments for the day was the blood draws and Glucose test. Ok again needles scare me bad but when I sat there watching vial after vial be laid out to draw to I secretly started to panic more. The thing is I didn’t want them to think I was not fit to do this or donate since of course surgery is a lot bigger deal. So internally I shook. Then the poke which all in all wasn’t as bad as sitting there while they filled 15 vials of blood and could feel my body getting weaker. When he was finally done I was told to drink the most DISGUSTING juice in less than 5 minutes. SO empty stomach, already shaky from the blood draw and now hitting my stomach was the nasty glucose. It was a strength I didn’t know I had keeping from passing out and puking at the same time. Didn’t keep me though from shaking and sweating. Quite an embarrassing thing in the middle of a packed lab room. All for Faith, All for Faith is all I could keep saying that kept me together. SO onto now another draw, and then, EKG, Chest x-ray, meeting with clinic, nurse, surgeon, CAT scan, and hopefully that will be what they need to tell me I’m a match.

The news I didnt expect

What would be the words for my feeling right now? Or should I say feelings. Scared, anxious, nervous, hopeful... Yeah almost every one. Let me rewind a few days. Once we got checked in last Friday night to Seattle they started her on fungal meds and IV meds and it continued that way till Sunday when they pulled her PD catheter. It never gets easy seeing your child wheeled away to surgery. We were told it shouldn’t be a very in depth surgery and should just pull out, so no intubation. Now there was of course the chance that it may need more than that and more would need to be done, but we lucked out and they cut the stitches and it just pulled right out. We were able to come see her shortly after, minutes feel like hours when you don’t know how things are going.

Later that day they got the results of what kind of fungus it was and it was one that was very well treated with a med that didn’t have quite the amount of side effects as the med she was on. The next night was my night to stay and let Dan sleep.  That next morning at 8 am they started to wheel her out of the room to place her temporary Hemo port. Now before this surgery was hard because there was such a sense of failure in my heart but today was hurt and pain and of course fear,,,which I tried not to over take me. The thing with this one is she would be intubated, and with Faiths’ lung condition and her history with being intubated just made my stomach turn. They of course have to come and tell you the risks and then I said my goodbyes, of course with no way of holding my tears in. I didn’t wait very patiently for them to call or let me know how things were because in a way I could feel that the way they expected it to go it wouldn’t, and didn’t. First of all we came back to the room after getting ourselves together and were told they were placing the permanent line. Now of course I wanted that and was not too fond of having a tube coming out of her neck, but the fact that the people that she was in the hands of didn’t tell us kind of unnerved me.

When we went back to see her she was really out of it and were told they had to pull the first catheter out because it wast o small and the other was too big and they trimmed it down but would be positional for flow. We had to wheel her directly to dialysis to try to see if it would work since she hadn’t been dialyzed for almost 48 hours. When they hooked her up to the machine, which is just scary it started out ok but then she started to scream and then where they cut her to place the catheter opened and started to bleed everywhere. Ok so the whole idea of it all was unnerving but then adding seeing what was going on in from of us just sent us over the edge. Dan began to break and had to get away from everyone because he lost it. See with both of us we had her health and comfort so much in our hands, a lot more then we realize at times, until the times are upon us. Thanks are to god the next day’s showed such improvement. She began to smile and eat again and Thursday evening we were discharged to the Ronald McDonald house. Sleep was not one of the benefits to being there but being out of the hospital setting was a relief.

So at this point she is 6 days a week, 2 hours a day on hemo, and is flowing good and not hurting her, besides making her not eat or move around for that whole time. So every day we wake up head over and start our day telling her not to eat and not move, not a good way to start the day for a 1 year old whose breakfast is life to her. It has been a feat to say the least.

Well here the news, to me, and everyone in our lives. Dan all this time has been the one hoping to be the one to give his kidney to save Faith, well we got the very shocking and depressing news he was not the match to her.

Doctors came in that next day to talk to me and how Faith was, our main thing the whole time once she went through this whole infection thing was we were not wanting to be putting her through a whole new set of surgeries just to tide her over till transplant, so why not rush it?

Well rush it is what we got. When we started talking to them and they told us Faith’s transplant workup would be pretty quick, but the biggest thing was the donor testing. This, they told us would be the shortest of two months which usually never happened, and may take 6. With how Faith has been doing, we didn’t have the 6 months to maybe find someone, which scared me. If Dan wasn’t then we would have to wait every time someone got tested, and no telling how long that would be. So on a thought, which had never even crossed my mind before I called my OB to check my blood type.  I AM AN O!

This is when the emotions start to collide. I was happy I was a match, scared I was a match, and mad Dan wasn’t. That was what he was going to do. Wasn’t it? All this while God has been quite a sneaky one with all of this. The moment we know it will be ok, he takes shows us where to hold fast. The moment we give up, he showed us hope. The moment we were not willing to give in, we gave her back to him and He gave her back to us tenfold.

But now I sit here at a crossroads mad, sad, and scared. Why me? Why could have it not been Dan, but then again it may not be me? That is where the teeter totter is. If I am not the one it will crush me, when I never expected to be the one to be the one to save her life.

As I said before it takes a minimum of months to do the work up on me for testing and come to find out Faith will be done on Friday and they will have the FULL conference on her two Wednesdays from now to put her on surgery books. For me, and most of you, the donor program is a foreign thought or idea so not really something most people know much about, much less me. Well it is a “Donor” driven program. So unless you call, make the appointments, push the doctors, and make this known you WANT this done, it doesn’t happen. SO I came into this pushing, shoving, punching and yelling. This is not something I could WAIT to happen. Again, this is where GOD had his hand. I got a call today. ALL and I say ALL of my work up tests and appointments will be done by Friday. I will know within 12 days if I am a match to save my daughter’s life. They are shoving all the appointments, and I mean allot of stuff I am SCARED of in two days. So in other words me and my FAITH will done Friday to wait together to know if I will be able to give her COMPLETE life.

So ANGER, SADDNESS, FEAR, HOPE, AND HAPPINESS fall into these next weeks for us. Yes it was news I did not expect, but as for the the life of Faith she has sure been the one to show us when not to expect what we want, but what God has planned for us.

So I ask now for Prayer for Faith in these next weeks to hold strong till that kidney come, and me, that I have FAITH that all things are in HIS plan. For I am scared and God has some way of making my fear of needles a reality.