Gavy Back In Hospital, Back On IV Antibiotics.

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

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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

Gav’s Numbers Off Kilter…New Addition to Our Family.

How is it that the days can sometimes feel like they can take forever, but the years seem to go flying by? I can’t believe that we are into November and the snow is beginning to fall and the mismatched mittens and itchy wool hats are being retrieved from the basement to be thrown throughout the house at the end of the day.

Lauren is two months into kindergarten now and is adjusting well. She came home the other day with an announcement after I asked her how her day was, “I have a boyfriend” she said. “He’s totally into me”. So the next day, being the mother bear that I am, I checked in with her to see how things were going with her new man, “I think he kinda broke up with me”. She seemed unphased by it citing the other kids she played with at recess instead. The dynamics of five year olds are eternally entertaining. She has come to the conclusion that Jay and I stay up at night and do all sorts of fun things without her. So around the breakfast table she always asks what we did the night before while our sleeping beauty was laid to rest. It’s always tempting to come up with some fun vacations, or pony rides in the kitchen, but in reality things have been a little off kilter as of late with Gav so the stress seems to be leading me to an early bed time, and middle of the night research as I used to do when Gav’s dialysis machines would incessantly beep.

We have been having a buffet of new issues arising with the Gavinator, and if they were all singular I may not be as worried, however it seems to be a rash of unexplainable that has left me, shall we say “jumpy.” After a while, you start to become an expert on your child, and you start to feel this pit in your stomach, and although you know that clinically there may be no signs of immediate distress, you can feel it looming. I think that one mother said it best (Thanks Jenny) that I am a Gavinologist, and things seem to be heading a little south in his health, but not deep south (I hope). He has had two heightened creatine levels which indicates the function of his kidneys are decreasing. His eosinphils are double the normal range so that has left him uncomfortable and itchy as of late and he has no measurable mycophenelate which is one of the three immunosuppressant drugs that keeps his body from recognizing the foreign kidney and attacking and destroying it. Despite the combination of these three factors, Gav still is a functioning, wild and crazy 2 and half year old, but he’s just so ever slightly off kilter.

I think that is what makes this disease so sneaky. On the exterior shell, they can act and look just fine, but inside the disease is always there, lurking and ready to destroy at any minute. You can go from fine to horrible in 60 seconds. It is a constant reminder that a transplant is not a cure, but a way to continue to live with the disease. Sometimes, after a while, you want to deny the pit in your stomach as paranoia, so you can continue to live in your happy bubble of denial that your child is better (and he does feel better), but the reality is that he will never be fine. We’re keeping an eagle eye on him and hopefully, if anything arises, we can extinguish it fast.

On the exciting front of the spectrum of life, we are getting ready to welcome a new leading little lady into the Winslow family at the very tail end of March. Jay and I got our first peek at her yesterday and as of right now, she looks, happy, healthy and active. I am convinced, that she will only grow happier in the upcoming months with all the turkey and Christmas cookies that lay ahead in her future (they’re not for me, they’re for the baby)! We wish you all a Happy Thanksgiving. We have started the long scroll of things that we are thankful for this year!

Jill

Gav is a Football Machine…Embracing All of Life’s Experiences

Gav’s eyes are actually shaped like footballs as he watches the Packers play. He actually wants to watch ESPN game highlights over cartoons in the morning (he is so his daddy’s son)! We better ease up on watching Farve or we may accidentally make him a Jets fan! He even fake tackles himself and sometimes prefers to play by himself and shows me where I can sit to be a spectator (because of course what is a game without a true fan!).

He is talking like crazy and officially is in his own room (YEAH, the kid is like just under three feet but knows how to monopolize some major bed space and is a night gymnast) thanks to some wonderful women who advised feeding his tube through his pj pant leg to prevent tangling around the neck (only recommend this for gtube people not ng, since it could pull it from position).

He is almost long enough to touch the pedals of his big wheel, which is good since the Transplant Games are coming to Madison in 2010 . I figure he will probably “Phelp’s” his age category. (I’ve talked to his doctors about upping his steroids prior to the games. My request was denied, they didn’t appreciate my sense of humor).

Lulu has hit five like a tornado, and has started her first year of school. Gav and I took her on her first day and I was all prepared for her tears. As we were about to leave, I bent down and looked her in the eyes and told her that I loved her like crazy, she sighed and said, “I know, you’ve been telling me that since I was a baby, and now you are probably going to tell me that I am the best girl in the world because you always say that too”…I knew then that she was ready to face school. I did of course shed a little tear when we were walking onto the playground and Gav started crying and told me to go back and get Lauren…he misses his little play mate! Most school stories revolve around recess and who she thinks may or may not have to go to the office. She will make a great hall monitor someday.

She is elated that the Cubs are in the playoffs despite her mother trying desperately to make her a Brewer’s fan…the irony is, it’s easier to be a Cubs fan right now than a Brewer fan!

Life has come full circle from the medical immersion our lives used to be, and things are starting to switch to monthly clinic visits and bi weekly labs. We’re learning to compartmentalize our life and not worry until there is something to worry about. Gav has a sedation appointment on the 1st of October to switch out his tube, so say a little prayer on that day please.

We’ve stopped hiding from life and are starting to embrace every and all experiences. Every time I hesitate when it comes to Gav, I think to myself, he is going to be doing all sorts of things (and then some) when he becomes a teenager. He is a by product of Jay and me so I know this will be true. So we may as well tread water together right now and see what happens (this of course does not mean that I am not going to sign him up for all non contact sports and try to guide him in gentle directions). What is life if you can’t experience all of it, and ultimately, Gav and his body will decide what is possible.

Well, now it’s off to make more big decisions around here, like what the kids are going to be for Halloween, why my kids are talking about their politics to strangers (I’ve created political monsters), and what is in this pantry that will cook itself in time for dinner!

Hugs,
Jill

Here are some summer pictures of our angels:

Whoo Hoo! Gav’s Sixth Month Kidney Transplant Anniversary is Here!

Woo Hooo Baby! It’s Gav’s six month transplant anniversary today (July 3, 2008) and we couldn’t be happier! This is a big milestone for him and we are definitely celebrating!

I was just reflecting on Gav’s six months and I thought that the grocery store would be the best example of how much things have changed. Six months ago Gav was helping me put things in the cart as I walked with him in my arms and pushed the cart in the other. Now he prefers to sit in the cart and throw things out when I take too long. It must look quite silly as you can barely see him because the milk and diaper boxes tower over him and things spontaneously fly out. However, his other quirk helps buy me a few more minutes of grocery store malay as I ask him 800 questions that end with him asking me “why?”. Also, Gav will never pass up a good opportunity to lay out the word “no”. No and why are definitely the top two words used in our house. He is quite the philosopher and loves to pontificate on the reason why for just about everything. He is starting to grow some and has hit the 10% mark on the growth chart.

Gav went in last week for his g-tube placement so he no longer has his “tubie” on his face. It was a rough surgery, as they all are. He is just now starting to feel a little bit better which is nice. It is so great to be able to go out and not be stared at. Last week when we went to the zoo I was stopped four times to be asked what was “wrong” with my son and this week, stopped zero…so the anonymity is nice. It is great not to have to worry about tube placement as well, or him throwing the tube up at night so I have finally been able to sleep again (other than the 13 kicks a night from Gav who thinks it’s cool to sleep horizontal).

Lulu is just being posh and hyper and recently cut off ten inches of her curly locks. I must admit I am very proud of her but also was very hesitant. She told me that she wanted to donate it to locks for love and I gave her the ol’ maybe next month “hoo haa” response and she grabbed her little scissors and held them up to her hair and said that she would do it herself then. I knew if I turned my back for one second that hair would be gone, so I immediately made the appointment. It’s very cute of course. I just thought if we were all as determined as a 4.8999 year old (she is also very upset that her birthday is taking FOREVER This year to get here already!) how much more the world would have accomplished (on the downside thought there would also be a heavy increase in drama, she is like a soap star). The thrill of t-ball is dwindling and she usually only pulls it together for the first inning and the second and third are either spent as using Jay’s arms as a jungle gym as he tried to rally the team into the second inning, or picking dandelion and clover boquets in the field. She has expressed interest in going on vacation (aka she jumped on her dad grabbed his collar and told him that was the one thing she wanted this summer, after a water park and horse of course). Jay asked her where she wanted to go and she replied “Africa” of course, we got her down to camping so that is on the itinerary.

We’ve been busy enjoying life and arguing with the people at the insurance companies. In our experience it seems that most of these people are hired for their jobs because they can say “no” so easily. We have decided that there is some magic verbiage out there that you must use when communicating to insurance company customer service representatives, because just plain vocabulary gets you nowhere. I think it’s some nonsensical secret password like “Aladdin flies an oriental rug” and that will get you to the third person who doesn’t know anything (after a two hour hold time) and they would like to help you but it would take three months processing time, six months of returned phone calls, sixty pages of signed notarized papers and a thirty dollar signature. We limit those to only once a day, because they can be entire day mood crushers.

Overall, we are so happy to see Gav and Lulu running, wrestling and laughing like all kids should be doing. She’s like a little fairy princess and he’s like the mini hulk so it’s always interesting, and mostly crazy, and beautifully exhausting. And there is not a night that goes by that we don’t know how blessed we are for the day we’ve just had and the next one to come.

I just want to take a moment and bring your attention to a family who has a little boy just like our Gavin. His name is Major Key and he will be having his transplant in California at Stanford on July 11th. Major’s kidney will be coming from his daddy. Please say a prayer and check out his site at www.cota.org under patient campaigns. We have never met, but his mother and I have become dear friends from across the miles. We have promised each other that one day the boys will meet and play while we relax and don’t talk about any of this! May God be watching over all of them. Also, if anyone is in the CA Stanford area and has housing that they would be able to use, please let me know, as they are out there for three months.

Happy fourth of July and God Bless America and all of you!

Jill