As a family we will walk through this difficult time together

Tuesday, June 5, 2012

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.

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