Surgery in Morning

First, everything has gone great since they took out the drains Friday. The original "Buddy" site is quite swollen and red but he doesn't seem to care. We were finally able to give him a bath last night which he loved. The weekend with Adelaide, Jeremy, and Eleanna was wonderful. We went on a hayrack ride, ate, shopped, ran, and played at the park. We got back to Columbus this afternoon, checked into Ronald McDonald House, went geocaching, and had dinner out thanks to Chet & Charlie.

I am sure you all remember that surgery is tomorrow but thought we might give some additional details:
1. Surgery starts at 8am Eastern.
2. We should get updates from the doctor every 1-2 hours.
3. Surgery could last up to 10 hours.
4. Dr. Spaeth is going to be working in his shoulder/neck area, original chest site, and possibly in his arm depending on how things are connected.

We will put up a few posts tomorrow as we get information but will let you know for sure when all is done.

Thanks for all the support.
Brooke, Michael, & Greyson

Drain Free

First...there are new pictures. Sorry for the delay but we are keeping very busy.

We started the day today with visit to the Columbus Zoo and Aquarium. This zoo is associated with Jack Hanna and he often tapes his wildlife shows there. We really enjoyed the visit and only wish we had more time there. The coolest thing (besides the animals and their habitats) was that Michael had found 50% off coupons and Greyson was free...and did I mention the beautiful weather (sunny, no wind and 70-80's).

After the zoo we headed back to Nationwide Children's (yes that is Nationwide the insurance company). Greyson got his 3 drain tubes out today with no problems. Two of the three were basically not draining at all and the other wasn't draining much by today. The worst part about the whole process of having drain tubes removed is having to hold Greyson still, which he hates, and peeling the tape off.

After the hospital, we stopped by The Ronald McDonald House (RMH) and got a tour. We have decided to get a room there on Monday night and probably as long as we are here after surgery. The RMH here is across the street from the hospital and is practically brand new. They ask for a $20 donation per night and ask families to help with small chores like starting the dishwasher or take out the trash. It is a beautiful facility and we will share more when we check in.

We hope you all have a wonderful weekend. We will start updating on Tuesday.
Brooke, Michael, & Greyson

Getting Out Soon

We are close to being discharged...actually just waiting on Greyson to wake up from his morning nap.
He/We slept through the night and woke up bright and early (6:30am). He ate a great breakfast and has been VERY active. He got his IV out and other monitors off so he is mobile again. We took a trip to the kids play room for a while and wore him out. He loved all of the toys there and activities going on.

The OT department helped to get the velcro on his wrist brace fixed and Dr. Shiels has been in touch to give some guidance on how to tend to his drains (especially the one that won't hold suction which is not that big of a deal may just be messy). The nurse has fixed us up with lots of supplies to change the dressings, we have a script for an antibiotic.... and we think we are good to go.

I hope to have some time to put some pictures up later today or tonight. We may even see about taking Greyson to the zoo/aquarium later today to keep him entertained.

Thanks for everything.
Brooke, Michael, & Greyson

Out of Sclero and All is Well

Again, I have to tell you all how much we love Dr. Shiels....he is so positive about how he can help Greyson and knowledgeable about Lymphatic Malformations (LM). He gave us his pager number and told us to make sure and keep track of it so that we can contact him in the future.

He came out a few minutes ago and told us all about what he did. He drained and treated 6 cysts that were sort of inter-connected so there are only 3 drain tubes. He also drained a few others to help Dr. Spaeth's surgery next week.

We talked a lot about the life cycle of LM and how to respond when they "flare up". He shared his positive outlook about what he can do to help get rid of what is there and how he can work with plastic surgery in the future.

He said that Greyson shouldn't be in any pain but that they want to keep him overnight to make sure he gets 3 doses of antibiotics before we leave. Greyson will be on antibiotics orally after that. We will come back Friday afternoon for the drains to be taken out.

Take care,
Brooke & Michael

Meet & Greet and Prep

First off, we must say thanks to Matt, our cousin that lives in Louisville. He opened his new home to us and cooked us two wonderful meals. With many meals out in our future, home cooking was just what we needed. Also, thanks to Kelly Avise and family...they packed us a "travel bag" stuffed with snacks, drinks, and puzzle books to help with the trip. And of course to Aunt Bobbie and Slick & Sandy, our neighbors, for holding down the fort at home keeping an eye on things.

Greyson met both Dr. Shiels and Dr. Spaeth earlier today for short appointments to prepare for tomorrow's procedure. It was very close to lunch, and he was tired, but he did great. The hospital is huge, but we seemed to find the radiology and plastics departments fairly easily.

  First Dr. Shiels did an ultra sound to check out the area looking for large cysts he will be able to sclerosis to help Dr. Spaeth when she does surgery next week....That is the primary purpose in doing sclero this trip. He thinks that he found at least 6 larger cysts (1cm or bigger) that he can treat.

Treating them will make it easier for Dr. Spaeth to remove the tissue. In the future he will treat the smaller cysts and he thinks he can help take care of the 100's of very small cysts and the 1000's of tiny ones. Treating the smaller stuff will create scar tissue which would make surgery more difficult if he did that now.

We will arrive at 6am tomorrow for an 8am procedure. He will be put out for 1 1/2 hours and will probably have 6 drain tubes. The plan now is to keep him overnight to get antibiotics in him and make sure all is well.

Dr. Spaeth was pleased to meet Greyson and to see/hear that there have been improvements in his ability to use his wrist and hand. She watched Greyson and took some pictures, and we talked about the surgery that will take place next Tuesday. She is predicting that surgery will take up to10 hours but possibly not that long.... It really depends on what she runs into. She is going to work on the new growth in his shoulder (around the nerves) and the original growth site as well as maybe in the top of his arm.

.....there is your anatomy lesson for the day :) please ask if you ever have questions about what is going on. We have learned so much going through all of this with Greyson and learn more with every conversation. We really like these two new doctors and feel like we are in the right place.

Take care and I will update tomorrow after we get settled in his room following sclerosis.
Brooke

On The Road

Off to Columbus....

It seems like we have packed up the entire house and I think we are ready to hit the road. We found that it is hard to pack for such a long trip when we really don't know how long we will be gone. But it is even harder to pack clothes for a trip when we are between seasons.

We are leaving today and planning on driving to Louisville, KY to stay with Matt, our cousin. Greyson has doctors appointments on Tuesday morning for a meet and greet and ultrasound to plan the sclero.

Sclero will be Wednesday morning and we have been told Greyson will have to stay overnight in the hospital. Our friends, the Newland's are hosting us over the weekend. They live in Indianapolis and are planning to keep us busy for a few days. Then we we'll go back to Columbus and be ready for Greyson's surgery on Tuesday, October 11.

Through this journey we will send updates to let you know how Greyson is doing. Wish us luck on these hours in the car and everything else. Thanks for all your support.

Brooke, Michael, & Greyson

It's Scheduled - Columbus, OH...Here We Come

The nerve damage to Greyson's arm/wrist/hand has made some small improvements and we know that it can/will continue to heal up to 6 months after the initial injury. Besides his arm issues he is doing awesome. This past weekend it seems like he is trying to "talk" to us often blurting out what seem like full sentences in some other language even pointing and changing inflection in his tone. His walking is almost mastered and he seems to think he is ready to run. He still loves the lake and being outside. We took him to the park for the first time last weekend and he couldn't get enough. I had to travel this week for work and we FaceTimed on the iPad so that we could see each other. When he saw me talking on the screen he got excited, smiled, waved, blew me a kiss and even tried to hug and kiss the iPad. It was SOOO cute and made me want to rush home but work called.

But because there is still lymphatic tissue inside his shoulder area that can "flare-up" at any time, the new growth needs to be dealt with. We have a plan!!! In the last couple of weeks we have talked multiple times with Dr. Spaeth, the plastic surgeon that specializes in Lymphatic Malformations and Brachial Plexus injuries. She and Dr. Shiels, an Interventional Radiologist, from Nationwide Children's Hospital in Columbus, OH have collaborated and come up with a plan to help Greyson.
Our hope in sending Greyson's records to Nationwide Children's Hospital was with that Dr. Shiels would review the case and have some sort of suggestion. We feel like Greyson got even better than what we had hoped for when Dr. Spaeth got on board. Even though we have not officially heard back from Boston Children's yet, she attended a conference this past weekend and was able to share Greyson's case with other plastic surgeons that specialize in the same field, including one of the doctors from Boston. She said that no one had an alternate idea but all agreed she had a very challenging case on her hands.

In talking with her we are pleased with how comprehensive, overly cautious, and knowledgeable she is as well as her experience in doing surgery in this area and her concern for Greyson's well-being.
We will be driving to Columbus, OH for an appointment to meet Dr. Spaeth on Tuesday, Oct. 4. Greyson will have a round of sclero therapy with Dr. Shiels on Oct. 5. He could possibly have to stay the night in the hospital. On Tuesday, Oct. 11, Dr. Spaeth will do the complicated surgery on his shoulder and also do some work on the original growth site to remove more tissue. She hopes that Greyson will be ready to go home in 2-3 days but won't let us go until she is sure that he is doing well. Dr. Jiang with support Dr. Spaeth and continue to care for Greyson when we return home.
This seems like it is still so far away but we realize it is just around the corner. Thanks for all your support. We will continue to make updates to keep you in the loop.

Take care,
Brooke, Michael, & Greyson