Seeing Through The Clouds To Find The Sun And Hope

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

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Happy 3rd Birthday Gavy!

Dear Gavy,

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.

Love,
Team Gavin

Gav Out of Hospital With Another Antibiotic

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

Gav Is Released From Hospital!

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

Gav Admitted To Hospital

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

Merry Christmas Everyone! Gav Loves Santa and Footballs!

Twas four nights before Christmas, when all through the house,
Two kids were a stirring, and rocking about;
The stockings were hung by the chimney with care,
In hopes that St. Nicholas soon would be there;
The children were wide eyed and waiting all snug in their beds,
While visions of footballs and cars danced in their heads;
And mamma exhausted, and I in my Cubs cap,
Had just settled down for a long winter’s nap.”

The countdown has begun for the big man in the red suit’s arrival, with amazing accuracy, thanks to the once a night chocolate from the advent calendar. We’ve been having so many giggles with the change of weather, shoveling (a lot), making snowmen without carrot noses (since Lauren is convinced those are the carrots that taste the best and can’t resist munching them), sledding and doing cannon balls off our porch into the massive piles of snow that cushion the plunge.

Lauren is keeping a close eye on Jay. Santa told us that Jay ate some of his cookies last year… so Lauren has him on a strict one cookie a day diet to ensure that Santa gets his proper due. Poor Jay, lucky me! We thought that Gav wouldn’t fare well on Santa’s lap, however, he ran right up to him and perched himself on his leg like a bird on a wire. It was the post leg removal that was traumatic. Santa gave the kids a small gift to take home with them, and Gavin cried, because all he wanted from Santa was a football and he received a McDonald’s happy meal toy. We assured him, that Santa is just giving a small gift for now and the others come on Christmas…he’s a little skeptical.

Of course he needs a football, since he eats with one, plays hungry hippos, and sleeps with one. He also wants to be a football player when he’s big and has footballs up to the ceiling, but what is one more football? Lauren, also wants a real car. She said Jay could drive it. I am sure that a car with a chauffeur is on every 5 year old’s list this year. We told her there probably would not be enough room to park a car under the tree in the living room, a car would be impossible to fit down a chimney, and so she might want to think of something else…maybe something smaller, like…diamonds or rubies or something equally simple befitting a five year old.

Gav’s numbers are looking good, and for the first time ever, we have one month off before his next set of labs. This is awesome, however somewhat scary since you become so dependent on the numbers to tell you about rejection. It’s like when we first take him home from the hospital, you feel so relieved to get out of there, but then you realize there is nobody else watching him except you. We are dealing with a nutrition watch as he has stopped gaining weight…so we are trying to give him more foods that have higher calories to try to offset nutritional supplement. This is the month for sweets and treats. For the last month, we have been hydrating him at night via the feeding tube, but with water, not with calories. Hopefully we can stay on this path.

Happy Holidays to all, may this coming year be even better than the last!

Love,
Jill