Test Results Up for Matching Donor Final Review … Gav Needs Tests For Possible Surgery

Making the decision to have a child – it’s momentous. “It is to decide forever to have your heart go walking outside your body…” – Elizabeth Stone. If we all just saw each other as such, what a beautiful earth we would share.

I used to watch the news everyday and cringe. But today I saw a little girl try to catch a yellow butterfly she called “sunshine” while tossing over dandelions, and a little boy laugh as a dog licked his face from chin to brim. I’ve decided that while the news is important, it’s also important to remember that the human race and spirit is still alive and well. We are still creating the reality that our children are going to live in…EACH ONE of us is someone’s walking heart. I’ve been touched with so many stories, so much kindness, and such amazing children, husband, family and friends. I choose to make that my new daily forecast!

Speaking of news, I have great news. So far, I am considered a match for Gavin. All test results have to go in front of a donor review board for final review, but the doctors think that there should be no surprises. I am so excited to give him this kidney. Throughout my pregnancy, throughout this year and throughout Gav’s life, I have felt so helpless to control all that has happened. To not be able to fix your child is a horrible reality. To go to a doctor’s office and not have them be able to tell you how they are going to fix him is excruciating. But now, I finally can do something…now part of me will forever be part of him (at least for the next 10-20 yrs.) Donate life!

I am also glad that I am not the one in the waiting room when they are taking my spouse and child back. I actually think that Jay is going to have the hardest time during transplant. I’ve been having some anxiety over the possibility of rejection, but am working on taming that beast!

We go in for some tests next week to see what if any surgical work needs to be done on Gav before transplant. If there is a surgery, it will be another 2-6 month wait before transplant. From what I have seen, I do believe that we will have one more surgery. At this point, I am just trying to brace myself for the coming months. No matter what happens, we need to continue on and have the faith at a chance for a somewhat normal life – which includes no more 10 hours of dialysis and feeding tubes and alarms and watching Gav go through so so much.

Gav has turned back into my vomit volcano and they are testing him for allergies to egg protein. Not that Gav eats eggs(or anything really for that matter), but I do. He gets egg protein through my breast milk. Now I have to cut eggs out of my diet completely. Unfortunately, pretty much everything has eggs, so it’s like tip toeing around the refrigerator to find things to eat.

The heat is wearing on him and we’ve been having some feeding tube issues. I can’t wait until post transplant to take him swimming and even give him a real bath. He loves kicking his little dangled legs into Lauren’s tubbie so I think he is going to be a little water bug. I can’t wait to build sandcastles, make mud pits, go camping and scoop up lightning bugs and not have every room filled with a jumbo sized bottle of hand sanitizer! There is just so much to look forward to! Transplant can’t come soon enough, it has invaded my every thought!

Lauren has a little cold as well so we have been laying low. I’ve started to try to write her several stories for when I am gone (we read and tell each other stories a lot). But now I am realizing that she won’t be interested in them unless I can figure out a way to illustrate them, since she loves the illustrations the best! So that will have to wait and I will have to hit up scholastic books (my mom keeps telling me to simplify and for some reason my simple turns into complex quickly)! My neighbor taught me a trick though, to wrap the books with gift wrap so Lauren gets to open them. Opening the gift wrapped books really makes her look forward to bedtime and will ease the fact that I am not there to snuggle up with her when I will be in the hospital. I’ll have to find a good hiding spot for the gift wrapped books, since she is such a little sleuth! I’ve started to work on craft projects to keep her busy and fun things here or there for sad times.

She is so funny, she found one of those baby toy remotes and she started chasing Gavin around and pressing the buttons. When I asked her what she was doing she said that “Gavin was her action toy”. I thought, hm-mm, a remote controlled brother, every three year olds dream! Anyway, Yeah for summer! Maybe I should try that remote control out on her (: Sweet dreams!

Jill

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2 thoughts on “Test Results Up for Matching Donor Final Review … Gav Needs Tests For Possible Surgery

  1. Thank you for your hopeful, wonderful stories and updates!

    Your remarks on books for your daughter got me thinking…do you have an Amazon.com Wishlist for your kids, or a wishlist on another internet site?

    On Amazon.com you can make Wishlists for yourself and/or your kids. Once you set it up you can put a Wishlist button or widget on your blog. When an item is purchased it appears as purchased on your list (like a gift registry) and the item is shipped to your home. Your address isn’t given out to the purchaser, which makes it a nice way for strangers wanting to offer a token of kindness the ability to do so.

    I just set up one for my son, which is why I’m currently an expert on the topic. 🙂

    Best to you and your family,

    Melissa (of Explore Jefferson County)
    Madison, Wisconsin

  2. I also long for the day that Logan can take a real bath. (He started PD about 7 or so weeks ago). I didn’t know when we went into dialysis that it would have been his last bath. I would have taken the time to enjoy it more had I known. He was actually born at home in water. I just read that Gav gets egg protein through your breast milk. So, I assume you were breastfeeding at some point through all this. I am nursing Logan (he’s 8 months old) and you’re the first one I’ve heard of other than us to breastfeed through PD. We are our dr’s first breastfeeding family. He has a mic-key and at night he gets 10 oz of my milk with 1 tbsp of Protifar. he’s also on bicitra, calcitriol, iron, captopril, atenolol, nutropin, and procrit. anyway, if you have a moment sometime I would like to ask you some questions on your little one’s weight and how to get him to gain.

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