Straws, Camels & All That...

Okay, so I think I've officially reached my breaking point. I'll start with the really good news, so as not to appear ungrateful. I am really, truly, so very thankful for the blessings we have recieved in recent weeks- first and foremost the fact that my parents got us a new car! It's a PT Cruiser and is big enough to handle all four of us *and* Little Pom's dialysis equipment and supplies. My father in law is picking it up in Milwaukee for us tomorrow. I can't even begin to say how grateful I am for everything our family has done for us these past few weeks. So, please don't take the rest of this post as ingratitude...it's just venting.

Today, we started our training for the PD dialysis. It's fairly simple, but it's still sooooo overwhelming. We had to sign a form saying that we understood that failure to do it, and do it right, might result in Little Pom's death. O.M.G. There is no bigger feeling than the understanding that your childs life is-quite literally- in your hands. One mistake, and he's exposed to potentially life-threatening infections or other conditions. I have to say, I was kinda in a daze throughout the training after that. I paid attention. I learned the steps involved in setting him up....but it's all soooooo scary.

After that , the instructor and I were talking briefly about the Mitrofanoff Catheter that LP will have put in in a few weeks. This is the permanant, internal catheter that takes him off of the Foley Cath. It's necessary, I know, because his bladder is still retaining fluid and that interfere's with the dialysis process. But 1) it's different than I was picturing it in terms of appearance & process and 2) it's something he'll very likely have for the rest of his life. My heart is breaking. I GET that things could be worse. I GET that his condition is "curable" with a transplant and that someday, hopefully soon, he'll be able to lead a mostly-normal, healthy life. Which I think is why the idea of the catheter forever gets to me. Here's a picture of the Mitrofanoff Catheter...keep in mind, it's so very different than I had expected and sooooo (again) overwhelming & (I'll admit it) slightly horrifying to me:



When they had explained it to me, they said that the incision would be in LP's belly button, so hopefully, it won't even show. His little belly button is already kinda deformed from the PD catheter- it looks "closed"...like a horizontal slit or fold, not a round bump or divot now. I had been picturing a port or valve that he connected the cath tubing to and drained from. Instead, he has to literally feed the catheter tubing down into his abdomen several times a day to drain his bladder, so that his dialysis will be successful. For some reason, this really, really gets to me.

So....we have

1) Overwhelming generosity
2) Overwhelming responsibility
3) Overwhelming treatment methods

I've been barely holding it together today. Daddy & I were at each others throats last night (to be fair...I was RIGHT and he was wrong) and barely spoke to each other today. Then, I left to go to the bank & get dinner. Coming back to the hospital, I was stuck in a HUGE traffic jam, because of a fatal car accident a few miles up the road. I looked in my rear view mirror just in time to see a Semi Truck slowing rolling towards me and not stopping. I took my foot off the brake & moved my car up as far as I could, but the vehicle ahead of me was at a stand-still and I didn't have much room. Long story short: I WAS REAR-ENDED BY A SEMI TONIGHT!
The driver admitted that it was his fault. In fact, he told me flat-out that he had forgotten to set his brakes while he went to reach for something he'd put in his microwave. He put two good-sized holes in my bumper...but thank goodness he wasn't going faster or I'd be dead right now.

I don't care about the damage to my car. I just really don't need one more thing to deal with right now. We have 48 hours to switch LP's bedroom with the Dancing Queens, come up with the money to purchase his new bed and mattress, learn how to do dialysis without killing my kidlet and now....we get to add dealing with insurance companies to the list. I am officially DONE. Update on the furniture front: we've contacted every nonprofit and advocacy group we can think of, including our own military Family Support unit. No one can help us come up with the furniture funds in time, and our families have already been so generous that I wouldn't in a million YEARS dream of (or really be able to) ask them. So, that's more stress. The "where will we put all of LP's medical supplies and equipment when we get home" stress. There's a LOT of stuff- big, bulky stuff that they give us in month-at-a-time kits. So that's 30 ten-pound bags of dialysis fluid, 30 tubing kits, tons of betadine locks, sterile caps, surgical masks, etc. Not to mention the machine itself. I figure that conservatively, I need to come up with $600-750 in the next 2 days, in order to equip ourselves properly to do this. But now that I need a new bumper for my car, I'm thinking that won't be happening. I'm exhausted. I'm overwhelmed. I'm scared. I'm stinky. I'm going to bed.

Sob.