Gav was admitted to the hospital Monday night, he is really sick. His creatine is the highest that it has been ever since transplant. Pray that he bounces back quickly and that he will be home for turkey and stuffing!
Also, here is information for anyone intrested in becoming a living donor to five year old Zachary, who is in need of a second kidney transplant.
Please go to http://help-zachary.com for more information. If you would like to be Zachary’s HERO and get tested to see if you are a match, PLEASE CALL THE DONOR LINE at (612) 625-5115, and use options 5 -8-1. Zachary’s blood type is A+. If your blood type is A+, A-, O+, or O- and you are in good health, under age 60 with no history of hypertension or diabetes, you could be Zachary’s HERO!!!!
Gav got out of the hospital yesterday. He feels much better and called his nurse bossy pants.
No kidney rejection!
Some new hurdles but he’ll clear them. Thanks for the thoughts and prayers.
Gav was admitted to the hospital today for an infection after the second time to the ER in two days…he has been running intermittent fevers up to 104 and complains of stomach pain. These are both signs of possible rejection so he is on an IV drip now and they are running more tests and doing an ultra sound.
They anticipate a couple of days in the hospital, but we will hopefully know more of what we are dealing with sooner than later.
Please say a prayer for him.
He is lethargic, but able to watch cartoons and eat Popsicles, so he is coping nicely!
Lulu is busy making “No boys allowed” signs and having closed dance parties to Miley Cyrus and Taylor Swift in her room (could concert tickets sell out any sooner…it’s like trying to find the golden ticket for Willy Wonka!). She started tennis and swim lessons and I think I have finally found enough constant activity that she usually doesn’t complain about having to go to bed at night (almost). Now if I could just figure out the recipe to make her sleep in more during the a.m.’s I would be a true genius! She is really loving swimming and has come so far, it’s fun to watch her try all these new things and take the world by storm. She’s becoming a master sand castle builder and is especially talented at making the moat!
Gavin becomes the sand castle and we just turn him upside down and shake him out at the end of his creation. He is a complete tornado. He has selective hearing down pat and often practices his expertise with me. He has some imaginary friends that make up his sporting teams. Most of the players start with B and some are more sassy than others, committing fouls and penalties and having to sit on the sidelines. Mostly he would prefer playing baseball at all times with some slight interruptions for tackles. He is very happy that Evie is here so he can tackle me again…even more points if he gets me off guard and I fall at random places out in public. His hair is ridiculously curly and of course I refuse to cut it (to Jay’s dismay). I love it(the hair, not Jay’s dismay). I do think that every boy should call his mother on a daily basis and say thank you. There is not a day that passes when Gavin doesn’t put my patience to the test, how things have changed. Medically, he is doing wonders. What a miracle transplant is!
Gavin and Lauren like to team up on our newest family addition…Evie Grace. They believe that you actually have to have your eyes touching her face in order for her to see you and talk really high and loud so she can hear you. They love her like crazy and only ask me to just leave her behind on a seldom basis so we can do something. She is a dream baby with sweet coos and a smile that lights up your whole heart. She looks a lot like Gav did as a baby, but smiles with a wrinkled little nose and a giggle like Lulu’s. She doesn’t make you work for them, she gives them out easily like presents to keep us afloat as we battle the waters with three in tow. And I think I finally have one with blue eyes!
Jay and I are losing terribly on this whole out numbered bit, but loving it (for certain we love reflecting on it most when all kids are sleeping peacefully in their beds). It feels like someone just finally threw us a paddle three months into this whitewater rapid excursion of three children.
Of course I am terrified of this H1N1 virus and wish it would magically disappear, or we could relocate to some remote island and avoid it while relaxing in the sun. Mainly, I thank God every night for all of my blessings…our kids, families and friends, chocolate, for Jay, and the Cubs(go Brewers, I think I may have to start pitching soon, I’m warming up in the dugout with Gav).
I hope this finds you all well and enjoying the summer!
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 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.