I am leaving town to go to a PKD Foundation board meeting and instead of packing the night before I was making a mummy costume for Gage. I would have been making it Sunday night to prepare for a dialysis Halloween Party on Monday but there is a party this Saturday for the kids and so there I was, with muslin on the evening I should be packing.

I love making the kids costumes. Love it. Everyone looks at me like I am crazy when I share this secret. I know, I know – it does in fact sound crazy. But making their costumes is something I WANT to do. Quinn is going to be a dragon, but only because Annie Mac gave Quinn the best, cutest dragon costume ever.

So, for your viewing pleasure in light of my late night sewing her are some homemade costumes from previous years. Before you roll your eyes that I make costumes amid all of this kidney drama you must know one thing: it was quick and painless when I put up the needle and thread and heated up the glue gun.

(I made the jacket from an old raincoat and added the little emblems. On the back I had ironed on: STAY BACK 50 FEET

And well, I made Gage’s lion costume. And although I never really put a clasp on the hood it didn’t matter – a safety pin worked just fine.

Gage has known that he would need a transplant for a very long time. We used to mention it in passing but started weaving it into everyday conversations like "Gage, what do you want for lunch and did you know that you will be getting a new kidney some day!?"

So yesterday I told Gage that I wouldn’t be able to give him a kidney because of my kidney stones. I said "do you remember when Mommy had kidney stones?"

"Uh-huh. Who’s kidney will I get?"

"That is a great question. We don’t exactly know who will be giving a kidney for you yet. We are trying to find the perfect kidney and all the doctors are helping us!"

"I only want a kidney from someone I know."

"Why is that?"

"Because I need to know Mommy. DUH!"

I knew I wouldn’t be able to donate a kidney to Gage or Quinn. Nearly two years ago when this happened I’d felt that I wouldn’t be able to even though I tried to put it out of my mind. The day after the news Julian couldn’t donate I’d picked up a copy of my stone reports and delivered them promplty to the transplant team on Friday.

So today, just now when I got the call that I am a "multiple kidney stone former" and it wouldn’t be in my "best interest to donate" I had already known it and made peace with the fact. Am I sad? Beyond words. But if I let my sadness take over from the goal at hand, we lose.  I will say I felt when she talked about my best interest I wanted to scream "But really, my best interest is seeing my child live! It’s my best interest for him to live off of dialysis! Really!" But I’m afraid they wouldn’t buy that.

The next step will be to send two (O blood) people over for blood work – for cross matching. They will select the best candidate from those two or if they are equal we’ll all decide who to send for the 2 day testing. At this point we have no idea who those two people are. But we have had several people say they would be tested. We’re so lucky and blessed that way. In addition at the weekly transplant team meetings today they will be discussing putting Gage on the active transplant list. And I assume that we have input where that is concerned. I hear it’s best for Gage to get a living donor kidney but know nothing concrete. I did want some more doctor input on this though.

All of this has my head spinning and tears barely visible around the edges of my eyes. I think I’m not balling my eyes out right now because that would be counter productive to figuring out the next steps and also I am pretty thankful it only took them 6 days to rule me out.

Small favors.

It’s 3 days post news and we’re better. Still a little shell shocked, but definitely better. It’s progress.

After talking today about various items on the check list and discussing everything at length with a couple of nurses, a doctor, Julian, and a really good friend we’ve decided to hold off on peritoneal dialysis or at least on making a firm decision about PD until we know if I can donate to Gage. And to the one person that said they didn’t want me to have to do it I thank you. I thank you for telling me it’s okay to say no to becoming Gage’s nurse for home dialysis. Why add the drama? Yes, why?

The powers that be are putting Gage on the transplant list, inactive, so he can begin to accumulate points. We’ll reevaluate if we need to change that status to active once we hear if I can donate to him. At that point we will probably still move forward to test non-related living donors.

We are beginning growth hormones. We have a Super, Dooper Nurse who is working on it diligently already. This nurse was with me when I heard the news on Wednesday that Julian couldn’t donate. SHE BOUGHT ME CANDY for goodness sakes. And she spoke calmly and nicely and I appreciate her calmness and niceness at that particular moment very much. She’s changing departments from dialysis AS OF MONDAY and is now on the transplant team (for the donor). Can we all agree that is extremely timely for me?

And how are we doing? We’re not crying as much and we’re telling jokes again. Quinn and I have some big plans this weekend. The girl needs some serious Momma time I’ll tell you that.

Remember that Life Keeps Moving comment? Well, it is moving and even though it still seems like we have the worst odds in the world we’re pretty thankful for these kids, even with their crappy kidneys. And while those kidneys have added a significant amount tears and drama and worry for us we wouldn’t trade it if it meant we’d have to give up these kids.

Gage and Quinn…making life move faster whether we want it to or not.

The answer is no. Julian is unable to donate a kidney to Gage.

Enough said.

All I could muster up last night were the above two lines. Here is the whole story.

We are devastated to learn that Julian is unable to donate a kidney to Gage. It turns out that his left kidney is out because it has three veins going into it (too difficult) and while the other kidney only has two veins, they are too large to match them up with Gage’s tiny little 43lb body producing veins. Just wouldn’t work. If Gage was older, bigger, yes. But now, no.

I am moving forward with donor matching but am not feeling very confident. I’m not sure if it is a true fear or just defensive heart protection. We have two non-relatives, with Gage’s blood type, that have mentioned they will be tested and we will be talking to them in the coming weeks to see if they are viable options.

As you might imagine we are crushed that Gage will have to be on dialysis longer than December. If I am approved, the earliest the transplant would happen we’re told is January. There are many doctor-parent discussions that have to occur in the next few days. Because I am not feeling lucky we are talking about peritoneal dialysis (at home, over night while he sleeps). That will require another surgery and a one week healing time before beginning. Add in some time for insurance approval and I’m sure that is a few weeks out. In addition, we will be putting Gage on the transplant list at least inactive (pending donor match from me) so he can accumulate points while we wait for results (probably 4-6 weeks). We will also be seriously discussing putting Gage on the active list now – that means that if he were high enough on the list (he gets extra points for being a kid and being on dialysis) and a perfect match came in from a cadaver that he would get it. We’re considering doing this now because if I am unable to donate then he will already have been on the list at least 4-6 weeks at the time we find out about me. If he ends up not getting one, then we can still test potential non-living, related donors. A third thing we are discussing is starting that growth hormone. Just in case he is on the list for a while he might benefit from the growth hormone, because he is really slipping off the growth charts.

As we have learned very well (okay, we get it) over the past 5 years when something shocking happens in the disease progression or treatment we need some time. More than one day and less than 5 days to digest everything emotionally. To mourn what should have been. To grieve for the impact of all this on the kids’ little souls. For how PKD shapes their lives. Time to work through our sadness for our family and the effect this horrible disease has on all of us. During those 5 days we know what will happen – life will keep moving on. Gage and Quinn still need to have Cub Scout camping trips and karate and pumpkins and costumes and fun and we’ll remember that we still have to live a life. 

Life always moves.

Gage pees a lot. He could go every 30-45 minutes if we make him. He still has a few accidents a week and is nearly always wet to some extent and he also wears a couple of pull ups a night. That middle of the night pull up doesn’t just find a way onto his body you know. If, and that’s a big IF, we go to bed at a decent hour we have to set the alarm for about 2:30am and change the pull up. What usually happens is that I go to bed between 1-2am and that time frame usually works for a pull up change for both kids. Every morning, without fail, we wish and hope they aren’t soaked. If they are, we are hoping that their water proof pad is directly under them above their sheets. And if that didn’t work as planned, we hope they aren’t laying on top of their blankets requiring all bed sheets and blankets to be washed.  Every morning we hope.

After much discussion we have all decided that Gage’s bad kidneys need to come out because of the excessive urine – or polyuria. Who knew there were so many possible ways for removal to occur? We can remove them both now since he’s on dialysis and will hopefully have a transplant soon. Or we can remove one during transplant and remove one after. Or remove both during transplant (this is what is currently the choice of the transplant surgeon). We are trying to schedule an appointment with a urology surgeon now to discuss these options. The options are currently rambling around in my brain. This is not a good thing I tell you.

One of our doctors has voiced a strong opinion that one should be removed during transplant (same side as the placement of the new kidney, which is place in adomen in front) and one should be removed once we know the new kidney is working well. She says about 6 weeks post transplant Gage should have the other one removed. She wants us to advocate for that because she says if for some small possibility the transplant fails then Gage would have one kidney left to do at least something. If he has none we add a whole new complicated picture to dialysis and fluid removal.

It gets more and more interesting around here.

It’s Tuesday. I hadn’t mentioned what we’re waiting for earlier because that meant I would be acknowledging the reality of the week.

The transplant team is meeting on Wednesday and on Thursday we are to hear if Julian will be allowed to donate a kidney to Gage.

I think I have been down playing the enormity of the answer to that question over the last week because to acknowledge it would mean that there is a chance that it could be bad answer. Not bad in an there are no other options way, but in a Gage will be on dialysis two additional months way – providing I can get through testing and approved. If I don’t approve to donate we then look to family and friends and he would probably go on the active transplant list.

Things I will be doing this week to keep my mind off of the wait: working, playing haunted house in our dining room, cleaning, reading blogs, crafting, lugging kids around, and G00gling inappropriate things that no parent of a sick child facing surgery should G00gle. Yes, I’m very, very, bad.

I was sincerely hoping that after dialysis today that Gage would become mellow. Relaxed. And when we got home I was hoping that Quinn would be snuggly and sweet. As it turns out they are none of those things today. This photo wasn’t from today but pretty much sums up how the evening went.

Every time I talk with a doctor or nurse about Gage I learn something. Did you know that dialysis equals about 15% of what kidney function should be? So, with his own function there is a combined 25% kidney function. Multi-vitamins in the real world are purchased with a character on them and chewable. In dialysis land it is something completely different. So, since we started dialysis Gage has had 3 med changes and dietary changes. Julian is very confused about meds and diet right now and he keeps confirming the changes with me. Which is driving me nuts. I guess I could write them down, but who has time for that with all this drama?

Our local Children’s Hospital has invited Gage’s teachers and staff from his school to attend a 4 hour dialysis workshop between 10-2pm on a school day in about a week. They will cover what Gage goes through at dialysis, how the hospital can support education with their on staff teachers, how schools can support a student on dialysis and they will get a tour of the facility.

I thought when I heard about the meeting and that his teacher would be attending that I would bust out crying for being thankful that Gage is  in such a caring (public)  school. But when I thanked the principal for allowing Gage’s teacher to attend she said that so would his special ed teacher, and the counselor, and the school nurse. Well, I could barely talk. All I could muster was "um, thank you, um…I’m really overwhelmed, um, thank you, um you have no idea." She replied "Well, you’re welcome. It’s really important."

Need to get off the computer and cry my eyes out now.