Month: January 2008

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Gavy Has a Rough Medical Week…But Keeps Walking and Telling It Like It Is!

It has been a busy week—-I have rearranged my house 500 times, bought 1000 tickets to vacation hot spots and added a sun room so Gavin can play comfortably outside without having to worry about getting burned with his new meds, and lastly sold my house to buy an RV and travel the United States before Lauren hits kindergarten…in my head that is.

In reality, Lauren has been my companion and watched a little bit of America’s Next Top Model Marathon (I’m a sucker for marathons) and now has developed her own runway walk, that she calls “Hot Stuffin’” which has made for constant entertainment for her biggest fan(s)!

She is the water to Gavin’s swim trunks—- there is nothing that girl could do that Gavin wouldn’t think is the coolest thing on earth. He is starting to stand independently and is finding the courage to take a few steps again. His little chest puffs out bigger than the blimps at the Macy Day parade!

But boy oh boy does he have the temper. We call him the little “Tazmanian Devil” when things aren’t going his way. He makes no qualms of letting you know EXACTLY how he feels about it (which usually involves laying flat as a pancake kicking and screaming as loud as he can). That boy goes from calm to hot faster than Earnhardt can make it around the track! His new thing is trying to put on everyone’s oversized shoes and walk in them (hence the frustration, a baby can’t walk in a man’s size 11).

Lauren is totally in love with knowledge right now, she is so interested in everything! Especially nature, she’s going to be my little hippy! Thankfully there is the Internet so I can still make it seem like I know everything, and we look things up in the “Pedia” (Encyclopedia). I know I said I wanted to learn to cook gourmet, but for now Lulu and I have become crock pot champions…we have officially eaten through all the casseroles that we so appreciated!

We did get into a disagreement this week over a rabbit. There is a sole rabbit that is running rampant on my $3 end of season landscaping purchases from Home Depot. I vote the rabbit has to find a new territory, where Lauren strongly appreciates the tracks and their presence. Never thought I would ever relate to Elmer Fudd. Any tips to spray things to scare the bunnies? I’m down a hydrangea, an emerald something, and a burning bush. This is going to be like a 200 lb bunny!

Jay has been busy taking care of Gavin, who had a rough medical week. He was in the ER all Tuesday and has just had a lot of little things that add up to a lot. We meet with one of his doctors next Monday to discuss some of the complications, and hopefully it will give us a more clear picture of what is to come. We thought it was going to get easier post transplant, but it’s still a bit overwhelming. We think this part of the adjustment period may last the first 100 days and then it should taper off, but we shall see!

Jill

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Trying To Establish A New Routine…Relearning About This “Whole New” Baby.

Lauren says we owe Grams, Pop Pop and Julie A LOT of quarters for helping out so much after transplant (that’s what Lauren gets paid for her daily chore). Things have been in quite a state around the house with Jay taking on the role of Mr. Mom. It always makes me think of that country song where he learns about crayons going up one drawer higher and rewinding a movie 15 times. It has taken about a week for him to get into a good groove with the new cares and two wild children in tow. It’s always a process to figure out how to work Gav’s disease into life and then for it to become just an aspect and not the center of it. We are trying to establish a new routine.

Gav strongly refutes Daddy putting him to bed in his new routine and has like a five minute slug fest with him each night as the battle of the wills takes place between a man, a baby, and a rocking chair! Gav is starting to walk and move around more now, so some of his strength may be coming back. He has been doing amazingly well still, but we are still tweaking his meds and he has to go in three times a week for his blood draws (thank God for the hickman)!

It amazes me how animated he is now, it’s like we have to relearn this whole new baby. Makes us realize how sick he really was. He is not quite fond of me not being able to lift him, and it breaks my heart to hear him say “uppy” and see him so sad when I can’t, but we find time to snuggle up in bed and hang out next to each other on the couch.

Lauren is a busy busy girl with her Grams at her side…the two of them are just the best of friends. Yesterday they went on a hike around the neighborhood and researched the tracks in the snow. Lauren is convinced that two of the tracks are probably deer and the other beaver. All those wild beavers around here in the city—-it’s almost hard to believe, but the girl knows her tracks (:

I have some good and bad days, usually the mornings are pretty rough and the nights are rough, it’s hard to lay flat for long periods of time. I have watched more TV in two weeks than I have in a year and I have decided that I need to do Amazing Race, start running in half marathons, and learn how to upholster furniture while becoming a gourmet chef on the side. Also, I would really like to become a hiking, nature type family. So I have some things to look up at the library for all my new future niches. I feel that maybe I am in a mid life crisis, since I seem to switch between HGTV and MTV and feel that these two channels are not very similar.

Jay and I try to relax by watching season two of The Office, one of our new found loves. Hope this finds you laughing at the end of your days and staying warm! Go Pack Go!

Jill

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Update from Jill…Jill and Gavy Going Home Today!!!!!

Everyday since Gavin was a twenty week fetus we have waited each day to see if he would be alive the next day. We never planned ahead, we never let our imagination run wild with the future. I now can see a little boy with a life ahead of him…I can finally start to let my imagination go.

We have just experienced a miracle, one without explanation – and one not only medicine can explain…we have been profoundly touched and overwhelmed and in complete awe.

I will have to update you more when I am feeling better. There is so much to this story. Between my parents and their childlife program here at the hospital, Lulu really viewed transplant more as a vacation than a traumatic event, and she is actually skipping out of the hospital at days end.

I continue to get better and stronger and am weaning myself off the pain meds quickly since they make me very nauseous and a little loopy.

The best news of all is that Gavin will be coming home today with us. It will be a time of new cares and new adjustments, but he is doing just famously…we couldn’t be prouder of our little man!

May the snow flurries melt before they hit your driveway!

Jill

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Update from Jay…Jill’s Been Discharged and Gavy May Go Home Very Soon!!!

Jill was discharged from the hospital on Wednesday (1/10) and will now be continuing her recovery from a nearby hotel and then eventually home. She can never be too far away from her kiddos. Lauren is now keeping her spirits up by skipping, jumping, and making beautiful projects. Lauren has been a trooper and has not wanted to be too far away from the family. She’s been staying at a nearby hotel with her Grandma and Grandpa for the past week. She has visited the hospital everyday and has done very well between the hospital world and the hotel. The hotel has a pool so she loves that.

It has taken a team of specialized doctors, lots of favors, donations, prayers, and support to raise our family, and we appreciate all the messages, prayers, support and willingness to help just to get to transplant. It means a lot to Jill and me to have such a great support system and to know that literally hundreds of people are a phone call away to help.

Gavin’s kidney is still working great, and the doctors continue to watch closely to see his body adjust to his new kidney. I have heard rumblings of discharge from the hospital staff, and I’ve even spoke to one of the discharge administrative staff. So, Gavin may be out of hospital before or around the weekend.

I have been by Gavin’s side the whole time and got to witness a miracle, which has been incredible. He may even turn into a Daddy’s boy by the time he gets home (but I doubt it).

Now I’m focusing my attention from the process of kidney dialysis to all that is involved in preserving the normal function of his new kidney. This includes knowing the information on all his blood labs and his new medications. The anti rejection medications play a huge part in keeping his new kidney safe.

I’m trying to get everything lined up (insurance, pharmacy, home nutrition, coordinating information from the transplant team, and keeping watch on his blood labs) so when they tell me we can go home – we will be ready (which may not be too far away :).

Thanks again for everything.

Jay Winslow

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More Post-Transplant Pictures of Gavin!!

Here are some great pictures of Gavin taken by Jill and Gavin’s big cousin Julie Schwalbach Elliott. Julie is a registered nurse and flew in from North Carolina to stay with Gavin the day of transplant and for several days of his recovery. Thanks for the pictures Julie, and for being such an angel to our special baby and his family when they needed you most.

If you want to see a larger slideshow of these pictures, you can click on this link.

If you are viewing this in email or via a feed reader and cannot see the pictures, please click here.

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Recap and Updates from Jay on Jill and Gavy’s Progress…Gavs is Eating Solid Foods!

It’s now day three post surgery and Gavin remains to be doing remarkably well. His doctor told me “he is not doing anything that they were not expecting him to do.” which is great news.

Here’s a recap of all the events of transplant day and beyond up to this point:

On transplant day (Thursday, January 3rd), Gavin got out of surgery around 1:30pm and stayed sedated (by the doctors) until the following morning. His kidney function was normal by 5:00 p.m. that same day, which was amazing and what I noted in my last update.

The next day (Friday, January 4th), he had his breathing tube removed in the morning. In the afternoon, Gavin headed back to surgery because his central line came out. It was only a 15 minute procedure, but it required sedation. It was unfortunate that he needed additional surgery, but I knew he needed the central line. I was just so happy his kidney function was working normally and that helped me handle the news of additional surgery.

On Saturday, January 5th, Gavin was able to drink. He was still tired but in good spirits. His kidney continued to adjust to what his body needed versus what Jill’s body needed. This includes the amounts of pain medications and other medications which have been adjusted as well.

On Sunday, January 6th (just three days post-transplant), Gavin was given the clearance to eat solid foods. Pre-transplant, he didn’t eat very much solid food at all. We were all excited to see how much (if any) he could eat.

With his brand new kidney, Gavin was able to eat three meals, eat lots of different foods, and spent more than an hour at each meal eating!!! It was and still is incredible.

Gavs is in good spirits and is recovering well. If all goes well, he will probably be out of the PICU in a day or two and out of the hospital in 7 to 10 days.

Jill’s recovery has been slow, but progressing everyday. She was able to visit Gavin and his good news continues to help her recovery process.

Thank you for all your continued prayers and well wishes.

Jay Winslow

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Gavy and Jill Doing Well…New Photos of Gavy!!!

Just received this email from Sally, Jill’s sister and Gavy’s aunt and Godmother, about Jill and Gavy’s progress….

Just wanted to give an update to everyone. Both Jill and Gavin are doing really well! Yesterday was the first time that Jill got to hold Gavin which was amazing! Both are recovering and working on building strength! Gavin even ate some food yesterday, just another great sign!

Thanks to everyone for their continued prayers and well wishes.
Sally

Here are the newest photos of Gavy with his brand new kidney!

[mygal=gavyhospital]

If you viewing this message in email and cannot view the pictures, please click here.

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Gavin Had A Great Night, His Kidney Functions Are Now Normal For the First Time In His Life!!!

Gavin did great throughout the night. His kidney functions are now normal for the first time in his life. His BUN (blood urea nitrogen) level has amazingly dropped from 77 yesterday (before surgery) to 4 today. His creatinine level has dropped from 2.8 to 0.2. The surgeon said the transplant went perfectly.

Jill continues the road to recovery and has been able to walk a few times. As you can imagine, Gavin’s good news really helps with her recovery.

It has gone amazingly smooth so far and I couldn’t have envisioned it going any better. It has been good news on top of good news, and all of Gavin’s doctors and nurses have been wonderful.

Gavin now needs his body to adjust to a new working kidney. But right now, I couldn’t be happier about how things have gone to this point. Thanks for all the support throughout our journey.

Jay Winslow

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Both Jill and Gavin Are Out of Surgery and All Doctors Are Pleased With Their Progress!!!!!

I just received a phone call from Jill’s mom and Gavin’s grandmother, Jane Schwalbach, as well as Jay that both Jill and Gavy are out of surgery and all doctors are very pleased with their progress!!

The doctors had to remove part of Jill’s 12th rib and she had a little extra bleeding, but they were able to stop it quickly. When Gavin’s surgeon came into Jill’s room, Jill was lucid enough to ask for her glasses and ask how her baby was doing. All good news!

Gavin’s surgeons, as well, are very pleased with how Gavin is responding. They have now taken him to x-ray to make sure his central line is in place correctly. Gavin’s surgeons are very happy with his progress.

Thank you for all of your prayers and well wishes. We can’t tell you how much we appreciate your support. Please continue to pray for them as they recover.

We will update you with any other details as they come to us.

God is good! Believe in miracles, they happen every day.

Kristin Carpenter, proud cousin and webmaster of savebabygavin.com

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Gavin’s Moment Has Come. Surgeries Are a Definite “Go” for Tomorrow Morning, January 3, 2008.

We have just received confirmation from Gavin’s grandmother, Jane Schwalbach, that the surgeries for both Jill and Gavin are a definite “go” for very early tomorrow morning. Gavin will need a blood transfusion during his transplant surgery. With God’s grace, both surgeries should be complete by early afternoon tomorrow.

Thank you to all who have already posted notes of encouragement, prayer, and well wishes for Jill’s and Gavin’s upcoming surgeries. It means so much to Jill and Jay to have such support from those who have been touched by Gavin in some way.

If you have not done so, we encourage you to send your love electronically through Gavin’s website. Please post your messages to Gavin’s Guestbook, or you may also send personal email or electronic card links via the “Contact Us” page of Gav’s website. All of those cards and messages will get to Jill and Jay personally.

On the advice of all doctors involved in this process, Jill and Jay cannot allow any visitation (other than very immediate family) at the hospital or their home for a minimum of 6 weeks.

Also, no plants or flowers can be sent to either Jill or Gavin because of Gavin’s immunocompromised condition. For those of you who wish to do something special, please consider donating to a children’s charity in Gavin’s name. Some special charities, chosen by Jill, are listed on the “Donate Now” page on Gav’s site.

Thank you so much for all the love you’ve shown to Gavy, Jill, and all the Winslow and Schwalbach families. We will post updates on Jill and Gavy’s progress on the site as quickly as we can to keep everyone informed. We ask for your prayers and support and to keep walking with us on Gavy’s incredible journey.

It’s time for miracles. May God and the angels watch over our special angels. And as Jill would say, “May your prayers be heard and may you cherish all that you have! ”.

Kristin Carpenter – Proud cousin and webmaster of savebabygavin.com