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!!!!

Thanks,
Jill

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.

Jill

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!

Jill

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!

Jill

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).

Jill

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!

Jill

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.

Jill

We are out of the hospital, just recovering from the rebound effect from being in an institution for several days. It’s amazing how trained you become, how much time seems to become a big issue…anyways, that’s a topic for another time—-Gav is doing really well, he was playing soccer and football and baseball today so I think it’s fair enough to say that he is back on the well wagon.

There seems to be debate among the specialists if it was or was not a staph or several infections accumulated at once, but regardless, the antibiotics are just for a few more days and then another lab draw to make sure that everything comes back negative.

Home always is the most enchanting place to be. I’ll write more when my brain refocuses. Thanks for the prayers!

Jill

Sometimes our life feels like we are in the middle of a dodge ball game. There are always a lot of balls being thrown at us, and most of them miss, but Wednesday night we got hit. Gav started a fever when we went to the pool and has had an on/off again sinus infection for the past month. Not thinking too much of it, we trotted home and called the pediatrician. Throughout the night, he seemed to get worse as we watched him close until morning and called his nephrologist.

She confirmed what we already knew, time to take him into the Emergency Room (for some reason I always need to hear that we should go there, since I can’t imagine going there willingly). While I appreciate the Emergency Room, because it is there in your time of need, it’s like practicing medicine on the freeway and you often get stuck on the ramp unless you have a body part that is dismembered or something that looks like a contagious rash/alien exiting your body. So we waited an eternity and they began checking all the balls in the air…liver, kidney, blood all the variables that frequently plague Gav’s well being. Finding that there was an infection, but not finding where it was coming from, they finally put him on a general antibiotic and admitted us…this is the first time a year from transplant that we have had to go inpatient. We’ve been lucky, but needless to say I haven’t missed it.

Poor Gav, they had an atrocious time getting an IV placed (four times, and a working IV that fell out prior to his IV dose), and was yelling, “I want to go home”. He was hitting away stethoscopes that lunged at him in every direction like I do in the summer with mosquito’s. In the end, the doctors won and Gav subsided for a promise of a little gum if he complied…he’s such a good kid, quite remarkable after all he’s been through.

He continued to fever through the antibiotic and laid on his bed for most of the day eyes glazed over watching cartoons (some new hideous one with a dancing cow and penguin). It was hard for him to fall asleep as people often neglect that sleep can really benefit sick children (a major annoyance of mine). In the afternoon, we finally heard that there was a growth on his blood culture.

This is a new experience for us, and they think that it may be a staph infection. It will have to be repeated to see if it was a false positive or if it is a true staph infection. Other than that, they are treating him for a possible sinus infection that hasn’t cleared up with some IV antibiotic. They think, at a minimum, that we are stuck here for three more days (its been over 24 hours and I am rapidly losing sanity and sense of humor and reasoning abilities with my over the edge almost three year old). We feel a bit like pediatric refugees since the hospital is so full. We are in some off set area of the adult clinic. I’m not commenting further on it, other than, we are trying to get back to the children’s hospital. I can tell that Gav is getting older because he has so much more fear this time than he ever had before. He’s doing well, but everything is definitely more traumatic for him…he makes us cover his IV with a shirt and then a blanket and then a pillow, for triple coverage so he doesn’t have to see it. If he does see it, he cries and tells me how much it hurt when they did it.

As for Lulu, she is awaiting to lose her first “canine” (she’d apparently be the first one in class to lose a canine, since the other teeth have been taken) and is looking into trying out for an extra part in a local play, (she asked if she was going to get paid…a working actress…Jay loved her train of thought, now he just has to get her some disability insurance in case she falls while acting) and loving hanging out with her Grams who is of course, spoiling her like crazy while Jay and I stay with Gav and await more news…please pray that its a false positive and a quick recovery and that we can get out of here sooner than they expect. Missing the outside world (even if it is 10 degrees!)

Although we ended up getting nailed by the ball, it will not stop us from playing the game.

Jill