Dylan James is One Year - 11/14/09

What a year it has been! Dylan has turned one! :) :)

Dylan is doing amazingly well post-reversal surgery, and we feel extremely lucky to have this little man (who started walking over the weekend) healthy. What a great great thing!

Thank you all for your continued thoughts and prayers. More follow-up with MUSC is still to come, but we're in the home stretch.....

Happy Holidays, Brinker's

Dylan's Surgery/Recovery Update

Hi All:

My apologies in not keeping this blog up-to-date....that should indicate that the past 10 days - to be exact! - have been very crazy, emotional, yet successful!

We went into MUSC on Thursday, September 3, 2009, to get Dylan prepped for surgery. It was awful. Since having Dylan in November, this was by far our worst night EVER. The procedure to "clean" Dylan out, was horrible. It was hard for him as it made him cramp up, and so forth. We were up with him all night long helping him along....we will spare you the details. (Keep in mind, that Dylan was not allowed to eat since Wednesday night at bedtime; making things even more crazy for everyone!)

On Friday, at 6am, the MUSC surgery team started to give Dylan a look-see. They weren't so sure that anything could happen - due to the "clean out", it left Dylan quite distended, and "too full" to even think of having a full procedure. Adam and I were scared. Were we going to only be able to do 1/2 of the surgery? Could we do all of it? So many questions.... way too many questions. To make a very long story short, Dr. Hebra spoke with Adam and I at 8:00am, and told us that he will do a step-by-step process, and go as far as he could go on Dylan.

The anesthesia team wheeled Dylan back to the operating room around 8:30am, and when they took Dylan, I lost it. Totally. Totally lost it. Dylan was being wheeled away in his baby crib, crying, and saying "mamamamamamama". Nothing can numb that. Nothing. Argh.

Time passed so slowly. Thanks to my mom - she brought along some arts and crafts for me to keep my hands occupied. During our time in the waiting room, we had a lot of great visitors, text messages, emails, phone calls, and people all over on their way up to see us.... that helped. Greatly.

Hour-by-hour we kept getting updates from the surgery team....things were progressing, and they were looking good. Dylan was operated on first by laproscopic surgery, then by a robot - the DaVinci, then sealed up the ostomy laproscopicaly. It's amazing what modern medicine and a talented surgeon team can do! Dr. Hebra is one of the very few, and world reknowned, surgeons that can operate the DaVinci. This is great for Dylan b/c the tools are tiny, and can do great surgeries on babies. They removed 10 -12 inches of "bad" intestine, and then sewed Dylan up.

Finally....we got to see Dylan at 2:00pm. What a long wait. Baby boy was sleeping so heavily, but were with him the entire time. And, what a shock it was for us to see a child without an ostomy! That was all we knew! He had the most minute stitches for such significant surgery. We are so grateful.

At that point, Adam and I were elated, grateful, and felt that our prayers were answered. It was a long 10 months, that was for sure - to even see if we could do the surgery, then to the entire pre-op fiasco, to a long surgery.

The next few days were spent on 8D (infant and toddler ward) at MUSC, and one of slept there and stayed beside him at all times. Mama and Daddy Walker, and Nana Wasdin were great supporters, as well as Aj, and all of our friends in Charleston, and Hilton Head that came and visited our room with Dylan, and gave us so much CHEER. Thank you.

It was also my birthday (3-1) while in the hospital, and this whole time all I asked for for my big day was a poopy diaper...well, I got 'em! Lots of 'em, and they keep on coming!! :)

We came home on Tuesday by noon, and have been sleeping, resting, and recovering from this rollercoaster. My mom is here and keeping Dylan while Adam and I return to work (to pay for those medical bills), and Dylan and she are spending lots of quality time together. Dylan is up and playing, crawling, creeping, reaching, and almost walking already! He's eating well, and doing everything that he needs to be doing. We are proud parents!

Thank you to all who have continuously supported us. We have had great meals, letters, cards, gifts, visitors, and COMPANY. Thank you.

We love you all. Please keep our little man in your thoughts and prayers. Yes, the big surgery is over, but we want him to keep on "performing", growing, and developing.

Thanks again. Love, Kristyn :)

....we have a date! Setpember 4, 2009 - MUSC

Well, we have a surgery date for Dylan's ostomy reversal..... 9/4/09. We are so happy to be able to have Dylan "fixed" this September. It will be the BEST-EST b-day gift that a gal could ask for. We are optimistic, and are really starting to see the light at the end of the tunnel. Already, we have the "grandmas" waiting in the wings to come and help us! Thank goodness for family. *heart*

To be cautious, we are still waiting on the biopsy results, and hopefully will know those today.

Thank you all for your continuous amounts of love and endless support.

Heartbreaking to Optimism.... when there is darkness, there will be light.....

....well, we made it home from MUSC this morning. What a tough morning beginning at 4:30am. Dylan woke up (early!) this morning, and to console him we gave him doc's appvd apple juice before his procedure today. We could only give him 5 oz, so that had to last for the long haul this morning. Thankfully, it nearly did the trick!

We arrived at MUSC today at 7am to surgery check-in. The nurses were all so sweet, and super baby-friendly, and saw the surgeon. And, in case you are wondering, Dylan weighs 21lbs, and 15oz. BIG DUDE! This is such a good thing, and Dylan needs to be a big boy to endure these tests.

The MUSC team performed a rectal examination, dilation, and biopsy to find out if he still had the stinosis (closure) of the rectum, as well to find out what is causing the stinosis, and to see if he has Herschsprung's Disease (nerve damage).

Dr. H said he did great during the biopsy and procedure (took 40 mins), but found a very significant amount of stinosis (surprising amounts, actually) towards the "exit". That is the place where he took the biopsy sample for pathology to test for Herschsprung's. The results will be back in one week's time.

Dylan woke up to his mommy and daddy, and had lots of sugar water to make sure he wouldn't get sick from any bottle fed food, or spoon fed food. That, of course, he took with great pleasure. He loves to eat! We got home, and he and Adam slept like logs....

We feel......at first, very sad and heartbroken. We wanted to know that the stinosis has disappeared. But, now, after taking a moment, some light is creeping into the darkness. Adam and I will keep hoping, praying, and believing that our little tank will be just fine soon enough.

The next step? Ostomy reversal surgery at the end of August/early September. He will be in the hospital for about 4 days, then home for recovery.

Love to all, kwb xo

Dylan's Biopsy Scheduled for 8/3/09

Dylan's biopsy has been scheduled today for August 3rd! We do not have many details at this time, but we are looking forward to continuing the quest for his continuous health.

Today's Radiology Appt. at MUSC

Hi All:

Thank you so much for keeping up with us.... we love that we have so much support.

We went to the radiologist's office today for some invasive procedures to take a look at Dylan's "lower half" to see where the stinosis, etc, is exactly located. Dylan did great.... Adam and I did well, but it definitely left a scar on us, too! Argh. To see your child cry while you help hold them down.... not so fun. But, I'll take it if that's what makes this whole thing better.

After about one hour of tests, we were dismissed from MUSC and told that the Dr. would give us a ring once he read and cross-referenced the reports.

Adam spoke with the doc this evening, and things look surprisingly well! Prayers do work! According to the surgeon, and his amazement, the stinosis looks as if it has been cleared up. (I know, I'm speechless too) So.... to be absolutely certain we know what we are looking at, they will be scheduling a biopsy next. The biopsy will be an outpatient procedure, but Dylan will be asleep and they can take a long look in there to see the specifics before they do the "pull-through" of the intestine/reversal. While they are taking a look-see, they will also test for Hershsprung's Disease (sp?). Originally when they tested for that disease back in November, it came out negative, but the doc is super thorough, so he still wants to be 100% certain.

I am delighted and amazed with what was found today! Unbelieveable! NO more stinosis?! I think that's why the biopsy --- the doc can't believe it either (ha ha!).

Oooh, I need to process everything, and start getting ready for round #2.

I will update everyone on the biopsy date, results, and then surgery.

Much love and many thanks for all of your thoughts and prayers. It's uplifting.

xo, kwb

ps. this photo was taken before the procedures today - what a cutie pie!

Here we come, MUSC!

We went in to MUSC today to visit with the ostomy nurse team, as Dylan had a small infection/cracked skin around his colostomy site. The nurses gave us some new cream to try, so we were good in that department....they are all so nice.

While we were there, Dr. Hebra (surgeon), wanted to visit with us. He took one look at Dylan's size (21lbs, 9oz), and determined that it is time to get the ball rolling with the next step!!!!! What a nice surprise today! There is a LOT to come, of course, but it's a starting point earlier than we had originally determined (Fall) due to his "BEAST-ness" of a size. Dr. Hebra indicated that Dylan is now large enough to able to withstand the tests, as well as surgery.

Our first pre-op surgery appt. will be on Wednesday, June 15th at 9:45am. At that appt., we will be meeting with the MUSC Radiology team so that they can investigate Dylan's lower bowels. They will take some pictures and give Dr. Hebra a "new map" of what the surgery team will be working with, as Dylan's body has changed dramatcially since November '08. After the pictures are reviewed, Dr. Hebra will then allow us to know within 24-48 hours after the radiology appt, if Dylan is a good candidate for the reversal surgery, or if we need to look at other options.

Let's all hope that he's an AMAZING candidate for surgery, and that the "map" of Dylan's lower half will show great things.....

Have a great day everyone.Love, kwb