B's first encounter with rejection...

So there's been a lot going on these past few months... I got a call from B's transplant team saying that they had done a test (DSA- Donor Specific Antibody) and he had a high number of nonspecific donor antibodies and they needed to repeat the test ASAP and were overnighting a kit to me. As soon as I got the kit I accessed his port, drew the blood, mailed it off and began the waiting process. I FINALLY got a call about the results only to find out that the test showed interference. Which usually only shows up in patients that have had IViG (Intravenous Immunoglobulin), which he had before transplant, so I don't know if that counts or not. So we started the whole process over. The team told me they'd tell me the next results in person at clinic. I called and told them that it wasn't fair to make me wait any longer and that I'm going crazy not knowing. The next day his Transplant Coordinator called me to tell me that his numbers were up significantly and that we had to do the test again and that they were overnighting me yet ANOTHER DSA kit! She rescheduled our clinic appt from today to the following Thursday and said that if his numbers are up again that he has to have IViG again (which he has to have IV Benadryl for and he has a reaction to it causing SEVERE aggitation) and we'll discuss the plan of attack from there to stop tue rejection. We were told that after the first 2 years post transplant that biopsies only happen of there's signs of rejection, so I'm 99% sure that biopsy is in our near future, which means that he has to lay absolutely FLAT and still for 8 hours after and be on bed rest for a few days so that he doesn't bleed out. I'm going to push for biopsy regardless... I drew his monthly labs today and sent the DSA kit off so we should hear something by Thursday at the latest I hope. I can't handle this waiting game any longer! Plus, he was so good at taking his meds and now he doesn't want to, he doesn't even want me to push them in his G-tube or put him on his overnight feed. He's lost weight, so I'm trying my hardest to fatten him up! I'll keep everyone posted on the results...

B's first encounter with rejection...

So there's been a lot going on these past few months... I got a call from B's transplant team saying that they had done a test (DSA- Donor Specific Antibody) and he had a high number of nonspecific donor antibodies and they needed to repeat the test ASAP and were overnighting a kit to me. As soon as I got the kit I accessed his port, drew the blood, mailed it off and began the waiting process. I FINALLY got a call about the results only to find out that the test showed interference. Which usually only shows up in patients that have had IViG (Intravenous Immunoglobulin), which he had before transplant, so I don't know if that counts or not. So we started the whole process over. The team told me they'd tell me the next results in person at clinic. I called and told them that it wasn't fair to make me wait any longer and that I'm going crazy not knowing. The next day his Transplant Coordinator called me to tell me that his numbers were up significantly and that we had to do the test again and that they were overnighting me yet ANOTHER DSA kit! She rescheduled our clinic appt from today to the following Thursday and said that if his numbers are up again that he has to have IViG again (which he has to have IV Benadryl for and he has a reaction to it causing SEVERE aggitation) and we'll discuss the plan of attack from there to stop tue rejection. We were told that after the first 2 years post transplant that biopsies only happen of there's signs of rejection, so I'm 99% sure that biopsy is in our near future, which means that he has to lay absolutely FLAT and still for 8 hours after and be on bed rest for a few days so that he doesn't bleed out. I'm going to push for biopsy regardless... I drew his monthly labs today and sent the DSA kit off so we should hear something by Thursday at the latest I hope. I can't handle this waiting game any longer! Plus, he was so good at taking his meds and now he doesn't want to, he doesn't even want me to push them in his G-tube or put him on his overnight feed. He's lost weight, so I'm trying my hardest to fatten him up! I'll keep everyone posted on the results...

WOW

Let me just start out by saying wow...  Wow is all that I can say, honestly...  I've just spent the past hour reading a blog from a mom who has recently lost her baby. (http://aniandmatttaylor.blogspot.com/) Her baby girl, Ruby Jane, lost her 7 month battle with liver failure.  She passed while waiting for a transplant.  I was okay at first, as I read backwards through her posts, as I have with so many other blogs, then as I got closer to the ones that she wrote after Ruby's death, it became harder and harder.  At one point she talked about how she sees moms who are frustrated or don't look happy and how she wants to go to them and tell them why they should be.  I lost it there.  I remember right after B's nephrectomy, we couldn't hold him, touch him and half the time we were sent away from the NICU because he could sense we were there and become agitated.  After his nephrectomy, he came out of the OR extubated and couldn't have any pain meds, because they had taken out his kidneys, the only was for his tiny little body to filter/ process the meds and weren't going to use his PD (peritoneal dialysis) catheter for a few days to let it rest.  So we had to just sit there and watch him, even when he was in the worst amount of pain possible, we weren't allowed to hold him, touch him, or even talk to him so that he would know we were there.  We had to be absolutely quiet...  We were in Gymboree one afternoon with Kyle's parents during shift change and there was a mom who was in line, on the phone and had a tiny baby that was WAILING!!  The baby just needed to be held, that's all, she wasn't asking much, just for her mommy to stop what she was doing and pick her up and love her.  It was all that I could do to not go over there and smack that phone out of her ear and tell her to pick that baby up and be grateful that she had her to love on!  I was so mad!  Here I am, broken hearted that I can't love on my baby and take away the unimaginable pain that he was in, that I had had several friends just lose their kids, and here she was with one that begged for love, and she ignored...  Kyle had to physically remove me from the store!  She also talked about how one woman said that she wanted to be a better mom because of her blog.  I started to (well, continued to) feel bad because the kids were messing around and B wouldn't come to me so that I could dress his G-Tube and all that I remember was being mad at him for it.  So, big alligator tears and all, so I got right up, went in and hugged and kissed him.  You never know when tomorrow just might be the last...

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