My parents always taught me that if you had nothing nice to say, say nothing at all. I was taking that stance the last month because it’s been a messy disaster and I was feeling like such. It seemed like everywhere we turned the numbers were not falling in our favor, and three of our kidney friends were/are in sticky situations. It seemed like trying to live a life was a novelty that we would not be afforded during the winter months, and I began questioning my “can do” attitude.
There is a fear, that never leaves, that you can not protect your child. It makes you start flailing your arms wildly in hopes that you can at least figure out some way to somewhat lessen it…or gain more control.
It’s hard when people don’t understand how fragile these children are, so they are surrounded by other kids and adults with fevers (avoid kidney kids if you have a fever) and runny noses and coughs and siblings who have been exposed on a constant basis. Because they look fine, because they play like your child…they are treated as such. However, for these kidney babes, it’s like putting them in the boxing ring with their hands tied behind their backs. With immune suppression, they suppress their body’s natural reaction to fight off foreign germs. The problem is they don’t know what they are suppressing.
I am happy to say that today, we won a victory that we thought we were losing. It has given me the hope back that was somewhat faltering. It’s hard to be brave, but the truth is that you wake up everyday and decide what kind of day you are gong to have and you can’t take hope away. There is a bright future for our kids, it may be filled with hills and valleys, but eventually you reach the top and see the sun. Gav’s numbers are back to his normal range and the reflux into the kidney is showing some relief (this is huge…HUGE).
We are all wishing you a very happy 3rd birthday today! Eat lots of cake, open all your presents, and have a wonderful day. You have blessed us all with your spirit and courage. We love you more than words can say.
We are out of the hospital with yet another antibiotic. We are having a hard time now that he’s been on so many antibiotics. It’s hard to find a growth of anything, so it’s just process of elimination and hoping that they pick the right antibiotic for the strain of infection that it may be. You don’t have the luxury of not treating an immune compromised kid. It’s been an exhausting month. Poor Gav said as we were walking out said, “I wish they’d figure out how to fix my arm.” He thought he was there all month because of the “EV” in his arm.
Hopefully this one does the trick and we can stay out of there for awhile. On the upside, his numbers are back in check which is reassuring. It was the fastest climb in his creatine we’ve seen spike between a two day blood draw. It’s always so terrifying having the thought of rejection around the corner. That is by far the scariest thing, knowing at anytime, anywhere for no reason at all, his body can attack that organ and reject it and there is nothing you can do about it.
Gav is doing well, but he’s still just ever so slightly off, which he has been all month. He’s missing that pinkish undertone in his cheek and actually sits down and rests, so I’d say he’s at 80 percent. I have a sick feeling that this is not quite done yet, whatever it may be, but I pray that I am wrong.
I promised him a fun day outside tomorrow, the air will have never smelled so sweet. He and his sissy can lounge through the melting snow!
We’re back in the “Big House”. Gav started to fever last night and we took him in today. He is back on the IV antibiotics and his creatine level is on the rise, which is not good.
He is starting to feel better already and is drumming and making me watch Wisconsin ESPN retro games from 2004…it’s like having a mini husband.