The days are dragging by as slowly as possible now that everything is up in the air. Today should have been my day three with no kidney. I should be in a lot of pain today and on a lot of drugs, feasting on hospital food and being forced to walk even though I would rather not. Instead I am still packing the kids' lunches and going to the bank all day. I'm still coming home and letting the puppies out and making dinner and running kids around. I still have this extra kidney. And Nathanial still has none.
Monday, Nat and mom came to town for a bunch of hospital tests to see what all was wrong with him and what all the doctors think they can do. Nathanial described one test as the most painful thing, next to kidney stones, that he has ever lived through. He was in so much pain when he came to our house it made me angry. He kept taking his oxycodone (sp?) and wincing everytime he tried to re-arrange his legs. He didn't sleep at all Monday night. (Although, Mace, our little black puppy, slept quite comfortably next to Nathanial in the guest room!) The next morning Nathanial was scheduled for another test, a cat scan, at a seperate hospital here in town. Conclusively, the doctors think Nathanial has pneumonia....even though he says he feels fine. They also determined his liver is enlarged and they want to find out why. While I am frustrated to not be done with the transplant right now, I am thankful that the doctors are giving Nat the attention he deserves now. Next Monday, the 23rd, the physicians have scheduled another meeting with Nathanial. They said, provided all the tests look okay, they may set a new date for a transplant at that time.
I'm not holding my breath.
In fact, I'm doing the opposite. I painted my nails again (I had all my polish removed for weeks in preparation for surgery). I started taking my Advil Sinus again for my headaches....the nephrologist told me that was hard on my kidneys. I am doing whatever I can to temp Murphy. Murphey's Law and I do this dance often. You see, when I plan and I have things ready to go.....guaranteed something will go wrong. So, when I don't plan, sure enough things happen that should have been planned for. There really is a method to my madness!
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Thursday, November 19, 2009
Sunday, November 15, 2009
Let Down
Well, by now most of you know, the transplant is not going to happen Tuesday.
Its kinda hard to write about this and not be emotional. I mean, we were admitted. We were sent home with our papers and our perscriptions and our 'after care' instructions. When I went back to work after being admitted, everyone from the bank was wearing their little green ribbons for us. I had my list of things I needed to pack for the hospital. The kids' teachers knew what was going on and they were getting the kids homework ready for them to be gone on Tuesday. WE WERE DOWN TO THE LAST MINUTE! ......and then the email came from my coordinator explaining things may be delayed. And then I saw I had a voicemail on my cell phone from Nathanial........I knew it wasn't good news.
Apparently, the doctors here in Wichita didn't fully understand the complications of having Nathanial as a patient. He's not your average kidney patient. He needs infectious disease specialists and blood pathologist specialists and neprologists and a bunch of other 'ists' that I can't even remember. I thought the doctors were acting rather cavalier about him all along. I was concerned that everyone on the transplant team was checking me out to death and not hardly even contacting Nathanial. But then again, I thought maybe it was just because I was so close here in town that they all knew me.
Nathanial will be here in Wichita again tomorrow. He is visiting with a long list of doctors and specialists and he is going to have his bone marrow tested (gag!). And after an exhaustingly stressful day for everyone in the family, I am hoping we have more answers. Its no fun to log onto my facebook and see my time-counter that says "two more days until transplant". It makes me cry. It was no fun to go to church today and have everyone say "oh Hilary, its almost here! We'll all be praying for you Tuesday" and then I have to explain the whole story again. Everytime I explain it, I start crying all over again like a little baby.
And Nathanial, on the other hand, is acting like this is no big deal! I admire his strength and his faith so much. I'm the one whining like the world is going to end on Tuesday and he's all like 'oh well, this is good. They'll fix whatever is going on and THEN we'll do the transplant. No biggie!' He's awesome like that. Its totally normal for him to be awesome like that. And its totally normal for me to cry a lot when things don't go my way. Thats why he deserves to have this kidney. And SOON!!
So please pray! Pray pray pray pray pray. There's a plan here--and none of us know what it is yet--we just have to have faith!! I am believing that this is just going to be a minor setback. I am going to believe that by Christmas Nathanial will have his new kidney. (because I was going to use that as my gift for him this year. lol) I am going to believe that by all these new doctors becoming involved with Nathanial, he will be even healthier than we ever thought! I am going to believe that there will be no more complications and operation kidney transplant will once again resume!!
~ Hil
Its kinda hard to write about this and not be emotional. I mean, we were admitted. We were sent home with our papers and our perscriptions and our 'after care' instructions. When I went back to work after being admitted, everyone from the bank was wearing their little green ribbons for us. I had my list of things I needed to pack for the hospital. The kids' teachers knew what was going on and they were getting the kids homework ready for them to be gone on Tuesday. WE WERE DOWN TO THE LAST MINUTE! ......and then the email came from my coordinator explaining things may be delayed. And then I saw I had a voicemail on my cell phone from Nathanial........I knew it wasn't good news.
Apparently, the doctors here in Wichita didn't fully understand the complications of having Nathanial as a patient. He's not your average kidney patient. He needs infectious disease specialists and blood pathologist specialists and neprologists and a bunch of other 'ists' that I can't even remember. I thought the doctors were acting rather cavalier about him all along. I was concerned that everyone on the transplant team was checking me out to death and not hardly even contacting Nathanial. But then again, I thought maybe it was just because I was so close here in town that they all knew me.
Nathanial will be here in Wichita again tomorrow. He is visiting with a long list of doctors and specialists and he is going to have his bone marrow tested (gag!). And after an exhaustingly stressful day for everyone in the family, I am hoping we have more answers. Its no fun to log onto my facebook and see my time-counter that says "two more days until transplant". It makes me cry. It was no fun to go to church today and have everyone say "oh Hilary, its almost here! We'll all be praying for you Tuesday" and then I have to explain the whole story again. Everytime I explain it, I start crying all over again like a little baby.
And Nathanial, on the other hand, is acting like this is no big deal! I admire his strength and his faith so much. I'm the one whining like the world is going to end on Tuesday and he's all like 'oh well, this is good. They'll fix whatever is going on and THEN we'll do the transplant. No biggie!' He's awesome like that. Its totally normal for him to be awesome like that. And its totally normal for me to cry a lot when things don't go my way. Thats why he deserves to have this kidney. And SOON!!
So please pray! Pray pray pray pray pray. There's a plan here--and none of us know what it is yet--we just have to have faith!! I am believing that this is just going to be a minor setback. I am going to believe that by Christmas Nathanial will have his new kidney. (because I was going to use that as my gift for him this year. lol) I am going to believe that by all these new doctors becoming involved with Nathanial, he will be even healthier than we ever thought! I am going to believe that there will be no more complications and operation kidney transplant will once again resume!!
~ Hil
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