medical-updates

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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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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

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Gavin’s Transplant is Still a “Go”…Despite Low Blood Count. Please Pray for Him.

It looks like all of Gav’s labs are somewhat better, his blood count is still low, so they will have to give him a transfusion in the operating room during the transplant.

Transplant is a go at this time. We will be preparing today, as we are at the hospital, and have a million “ologists” to meet with.

Please say a prayer that tomorrow Gavin wakes up and accepts this kidney and for the first time in his life, feels good…

Thanks to all.

Jill

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A Winslow Christmas…Preparing for January 3rd Transplant.

Now I know where the script from National Lampoons vacation came from…ahh, Christmas has come and gone and it was beautiful and wonderful and it’s hard to find the kids in the midst of all the new toys that they have gotten. Things have slowed down to a tiresome pace since we moved to the third of January. We are back in lock down mode so we have had a pretty low key Christmas. All Winslows 24-7 has led to some interesting altercations between Lulu and Gavs.

Our last outing was Lauren’s Christmas concert to see her on stage with her little classmates. I think she may have only learned three words to each song, but she loved being up there. And really, is there anything cuter than three rows of Rudolph hats looking back at you?! Santa came after their show, and her eyes got as big as Reese’s peanut butter cups with delight. On our way home, I told her that I couldn’t believe Santa had made such a trip so close to Christmas, and that they must have a great class. She then assured me not to worry, Santa is not so busy, it’s the elves that are working like crazy. Apparently, she has decided that Santa is more in the PR, delivery management sector, which allows his appropriate face time with children immediately prior to his visit. He is in essence “the man” in a big red suit. Her favorite gift was her number one request, her harp (like every other four yr old out there, she too had a harp on her list—-who asks for that, only Lulu!)

We have put Gav on a rigorous exercise program prior to transplant. He is into sit ups (rotate arms on back of head back and forth and move Buddha belly side to side) and Hi-ya kicks…it’s all so very official. We are thinking of putting a sweat band on him and making a toddler exercise video…look out Baby Einstein. His hair is actually beginning to become too long for his mohawk which has put me at a crossroads. I do enjoy his mohawk (probably more than I should) but I would hate to cut his hair…which puts him at where he is now, a bad baby comb over…but I think that we are going to bear through it and let it grow out (Jay does not agree with this) and see if he gets his curls like his sister…I figure if I let him have a mohawk now, and then long hair, he can do little to shock me in the future (I’m going to regret that)…

Jay and I are recovering from the 46 sugar cookies that we ate over Christmas (and when I say 46 I really mean 117.75) and are just trying to make it through each day…we did take Gavin in today and his labs have been the worst that his have ever been. We have made the appropriate changes, and hopefully we will see the results that we need on Jan 2nd to proceed with his transplant. They do believe that it is possible to get everything in place, just more dialysis and shots and food changes…but on the upside, his liver enzymes were good, so we just need to boost his hemoglobin quick, especially to avoid a transfusion which will complicate things. Well, I better get to my gift from Santa this year, five empty photo albums for about three years of photos backed up onto Shutterfly, that I still have yet to order… the curse of the digital camera…

Jill

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Merry Christmas…Gavy’s New Transplant Date is January 3, 2008!!!

So we have been playing roulette with Gav’s transplant dates… We went from Dec 28th, to Jan 17th, to Jan 31st to Feb 21 and now, we are finally set on January 3, 2008. We had to make some more adjustments, apparently there was a misunderstanding, and we will still be doing an open nephrectomy so we were juggling surgeons schedules (imagine trying to coordinate two operating rooms, three surgeons and two specialists).

I have been having some anxiety with transplant since now I have seen my organs in 3D (which all the medical people think is so cool, but is freaky when you see your organs rotating on screen, “as if they cut me and I was looking up through my feet”) and they told me that I most likely will be losing a rib on my right side (very Hollywood). More anxiety piled on top of that when they showed me that Gav will have an incision all the way vertically down his chest – so there’s been some sleepless nights.

I can’t believe that we have to do all of this to make him healthy. It just seems so bizarre because when I see him, I don’t think of how sick he really is. I see this little bubbly, cuddly, happy baby. I feel like everyone must be crazy (but as usual, everyone is sane, I’m just crazy). It was the first time that I ever started crying in a doctor’s office since he was in the NICU, when all the transplant information came at me like someone was throwing tomatoes at me. It just has to happen this time, I just can’t take another bump, I just want him to feel good, if we have to do this, then let’s do it!

Gav has been trying so hard to stand. He has gotten himself into a pike position but can’t quite balance that belly to stand up independently (he can stand by pushing off of objects or people). I love that he is in the stage where any kind of “Boo Boo” can be fixed with Mama’s kiss. He would crawl through the whole room for a kiss on his “Boo Boo” and then instantly, he is okay. That and Beyonce’ he loves that perfume commercial (but who doesn’t love a little Beyonce’ in their lives?) He is obsessed with helping me with the laundry and is fascinated when he sees the water pour in, one of these days he might tip himself right in there. He currently has a sinus infection and may have renal rickets (a bone disease that should remedy itself post transplant) and has been complaining about wrist pain. Every time that he sees Santa he says “Ho, Ho”. (I’ve tried to get him to the ho, ho, ho – but he won’t do the third, perfectionism I know on my part, but it’s just not the same without the third). Christmas has brought back the word “mine” to his vocab and he has to make sure that Lauren knows what is his…it’s great because he has an awesome new pouty face that I like to watch when he has to share.

Lauren on the other hand is having some restless nights “because I can’t get Christmas out of my head” (insert two hands on head and her trying to shake it out). We went to get her hair cut before transplant because Jay can manage a pony tail, but that’s where it ends so we wanted to make it simple for everyone. It was her first haircut ever and the hairdresser treated her like a princess (now we have many requests for a little pamperin’ at the salon). Most mom’s have first hair cut bags with little wisps, I have a baggie with like a five inch strand of curly hair.

She has been wonderful through Gav’s vomiting (it’s been heavy and frequent again unfortunately), one night when he started at 2:30 a.m. she stood straight up in bed (of course she had snuck in by us), threw her hands out and told Jay and I not to worry, “I’m a professional” and went to go get us towels and help out. I can tell that she is getting hip to all this medical stuff now. She needs things “stat” and any question that Jay and I can’t answer she tells us “to call the Dr. on call”.

Thank you all for all of your prayers, we will need them once again on the 3rd. We feel so blessed to have yet another Christmas all together and know how lucky we are. Thank you for your support, 2008 is going to be yet another miracle for our family, may you find yours as well!

Happy Holiday hugs from the Winslows

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Transplant Has Just Been Canceled…Gav’s Liver Enzymes Are Elevated.

Transplant has been canceled. Gavin’s liver enzymes are elevated. They believe it is a reaction to the antibiotic Augmentin but need to watch the numbers go down before they can transplant into it.

We are devastated right now, but know that everything happens for a reason. They are anticipating a January transplant date if his liver starts to improve over the weeks. It looks like Gav will be having a kidney less Christmas…we will get there, I guess today was not his day.

Jill