Thursday, October 8, 2009

Broken heart, broken kidneys

It seems I am not to be the donor for my son. I called over to Emory this morning in hopes of getting my 48 hr urine test on the way. No such luck, it's been put on hold. Though a nephrologists does want to see me. I have stage two kidney disease. They did a GFR (Glomerular filtration rate) to test my kidney function by collecting 24 hrs of urine and then a blood test to test serum creatinine in my blood to contrast that with the creatinine levels in my urine. They want to see how much creatinine is being excreted, but also how much creatinine is left in my body. Normal level range in 90 - 120. Mine is 82. Not bad, mild damage to say the least, not donor material.

My heart is breaking. I want my son to feel better and here we are again at square one! Another two to three month process now for my hubby...who is still in the interview process for a new job. A physically demanding job that he will not be able to do the physical requirements of if he is having his kidney taken out in December. Started with three potential donors - now down to one. Damn my pride.

I went to a VERY bad place after receiving the news this morning. I'm fortunate in that I "bounce" back fairly quickly. This obviously is how things are meant to be in the long run. I need to be with my son during and after surgery. I know him, his medications, dosages, reactions and labs. I've been there for all of his surgeries, some by myself in the waiting room. It seems I'll be doing that again for transplant. Hubby across the street, his parents with him, my parents with William. I can handle it. I've handled it all. But seriously...DARK place this morning.

I have signed my donor card, all in honor of Matthew. I was thinking in my mind how I could "cheat" the system. Re-write my will to say that Matthew is to get my organs if I pass before him and he is currently on the waiting list or under-going dialysis treatments. Then I would over-dose. I'm NOT going to do that. I just felt like I could this morning. I just want my child to stop hurting. I DO NOT CARE IF I AM ON DIALYSIS IN TEN YEARS!!! I just want to make sure my child is here in ten years. Hell, his butt could finally drive ME up there and make it full circle. ;)

I was talking to a friend this morning about how all mother's know what it is like to see their child in pain. All mom's can empathize with that. A broken arm, diaper rash, ear infections - all are BIG deals to that mom, because that is her child. She would do anything to fix them or make the pain go away. That's what I wanted to do, but in an extreme and selfish way. I'm good I tell you! I'm just sad, not suicidal.

I will do what needs to be done next. I will continue to take my child to hemodialysis twice a week. I will administer medicines at home. I will monitor his blood pressure twice a day and chart it. I will give him bolus feeds every three hours through his g-tube. I will sit and wait to hear word from my husband's surgery and my son's surgery. I will care for both of them as they are on the mend and recover. I will not give him my kidney. I guess my heart will have to be enough for now.


Randi Jo :) said...

sniffles & hugs. I absolutely know that Matthew knows that you love him and that you sympathize and want him to be better. He can feel that it in your hugs and smiles and love and tears and how proud you are of him. He is doing so good and he's smily and so cute! you have done such a great job of doing all you can to help him have a 'normal' life outside of all the abnormal circumstances. He will always see you as his earth angel even if it wasn't meant for you to be his kidney donor.

dark places are scary yet don't ever doubt that God isn't there. He won't leave you. He isn't shocked by your anger, frustration, doubt, hurt, thoughts to try to make this all end so matthew can be well.... He knows everything going on inside and He can sympathize. God knows what it's like to see His son in anguish and pain beyond what we can bear. And He knows your pain. I don't get all this.... but I know He loves us and I know there's hope. He loves you and can take whatever emotion and feelings you have as dark and ugly and scary as they may be.

Jenn said...

My heart is broken reading this. If I could drive down there and give him my own kidney I'd just about do it! Unfortunately, I think my kidneys are not that great either. :( I'm scared to know the extent of it actually, but I had a lot of problems with them when pregnant with Faith. :(

I admire you each and every day for your determination and COURAGE. You are a fabulous woman and I feel incredibly blessed to know you. You make me want to strive to do better at not getting so upset and down about the little things that occur everyday. Your optimism/positive attitude shows in everything that you experience. I love you all so much, and just know that I am praying and will continue to pray for you all as many others are doing.

Randi Jo :) said...

p.s. and I thoroughly believe that punching bags were invented by God to get out or mommy frustrations and worries and fear and anger and doubt.... so find one and go for it. emotions are not bad. they were given to us for a reason. let it out

Julia said...

I'm so, so sorry. As you know, we parents were both ruled out as donors when our son was on hemo - SO I KNOW EXACTLY how you feel. It is so very hard to have a set back when your child is suffering.

I know you will rebound and find a better place emotionally during the wait for daddy testing, but know that whatever you are feeling is normal.

I know we've never "met" in person, but we share a common bond because our kids need kidneys and I just want you to know I understand and am on your side.

generationsgoneby said...

Maybe God's plan involves someone else, so that you will be able to care for Matthew and not be sick at the same time. I know you want him well yesterday. I fully understand that. But God's timing isn't our timing.
Keep caring for Matthew the way you have. Stay out of that dark place. There is no help for Matthew there. Don't be ashamed of being there though. We all go there! Believe me, the Bible doesn't talk about the shadows of death if it didn't think we would experience that dark place from time to time.
And do whatever you can to keep you healthy. In ten years from now, Matthew is going to need someone to chase after some balls he is hitting, and you are going to be ten years older. ;)

my sons mommy said...

I just read your post, I will be thinking of you. Thanks for stopping by my blog.

Brayden's Mom said...

Oh sweetie! I am so sorry. I dont really know what to say except I have been to that dark place too. We are aloud to go to that place every once in a while but you did what we have to.....come out of that deep dark place quickly.

Why dont you list Matthew on the UNOS list. Once he is listed you can activate and deactivate him at any time. I know a live donor kidney is that best but a cadaver kidney soon would be better than waiting months and months for them to get the process done. And in the mean time if your husband goes thru all the tests and is acceptable then he can get his kidney then. JUST A THOUGHT.

If you need anything just gimme a ring. 931 319 0136

Jenny said...

I am so sorry to hear this mama! It has to be heartbreaking! It is really hard to not be able to give your son the one thing that would help him. It feels so helpless. I know that I would give anything to be able to give Logey a kidney.

Is there a reason that they're not putting Matthew on the list in the meantime? Just in case for some reason it doesn't work out with your husband. If he was put on now he could be gaining time and then if your husband is able to donate they would just take him off. I pray that all will go well for your husband to be a donor to Matthew and that somehow it works out with his job. (((mama)))

Santino's family said...

I was saddened to hear your news. I pray that your husband works out. I was telling my husband about your situation yesterday. We come to find out that my husband has stage 2 kidney disease. He had labs done and went in yesterday afternoon for the results when he was given the news. His GFR was 81. It was very shocking to find this out, especially after hearing your story. Our lil ones will get their kidneys one way or another. said...

They won't list him? Logan's nephrologist told me early on that they could list him at 7 kilos and that he would be inactive. Then when he hit 10 kilos they would activate him so that by the time he was activated he would be at the front of the list. I know some other places don't do this. Haha...even our drs' nephrology partner (also known as his wife) didn't do this for the other baby in the practice. Can you ask them if they can list him and just not activate him until he's fully ready? Chances are by the time it's all done--he'll be ready. I would really fight this one just in case. Again ((( ))). It's amazing the difference a kidney makes. Logey went from throwing up no less than 4-5 times on a good day to not having thrown up even once since transplant. It truly is watching a miracle take place! I pray that Matthew (and your family) get your miracle kidney as soon as God's plan allows.

Heather said...

i'm so sorry. i wish there was something, anything to say that would help. but again, i'm just sorry. hoping that brighter days and help for your little guy are close by. and you too...scary to know that you are sick without realizing it. as crappy as it is, i am glad that your problem has been found. take care.

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