Make-a-Wish Day 1.

Our Limo came to pick us up bright and early at 4:30am. It was a very quiet drive to the airport as everyone was very sleepy.

We got all checked in and a wonderful lady from SouthWest Airlines and TSA helped us through the security lines. It is really no small feat traveling with a medical fragile child and all their necessary supplies. We had 5 medical carry-on bags and 1 bag that was checked which contained all our clothes. I don't think we will be flying again anytime soon. We totally understand that the TSA has to check all Brocs liquid medication and all his TPN and IV fluids to make sure they are all safe but WOW its still a lot for a family to go through.Everyone involved try to make the whole process as smooth as possible.

Broc was given a little gift from SouthWest Airlines too.

 
This special lady went above and beyond to make a flight as happy as she could. Both the boys were invited into the cockpit and of course asked a ton of questions. Both pilots were so happy to answer them all and even let the boys touch a few things. They felt really special.

Once we arrived our greeter Sonja from Give Kids The World was there with a big poster with Brocs name on it.

You can only imagine the boys excitement when they were offered to sit in these beauties! The boys had fun sitting in Corvettes in the parking garage while Daddy was getting our rental vehicle.

Once we got everything loaded we headed for the Village. Florida traffic was interesting to say the least. While driving Brocs says I know we are in Florida because there are palm trees everywhere!!

Once we got to the Village we went to the Town Hall to eat lunch as we hadn't eaten all day except for snacks. Lunch was yummy. After lunch we went to explore the village and hang out in their game room. We also went to visit the Castle Dreams to get the boys special pillows and Broc wrote his name in his star so that it could be put up with all the other children's stars.

It was pretty warm so we were happy to escape the heat for a little bit. All the videos that go with each day will have to be posted on Facebook. Unfortunately I cannot put videos on his blog.
Thank you for enjoying our day with us. Day 2 will be up next.

Life since bowel surgery and hematology

This surgery has really taken a lot out of Broc. It has sent his counts all crazy as well as his liver enzymes. He is tolerating liquids well and we will slowly go up on his pedialyte at night. At the moment he is at 2ml an hour for 12 hours. His sleeping during the day has decreased which is easier to be able to go out and to his therapy appointments. His incision has healed really well which has made the previous scar look much better. Unfortunately today his internal sutures are starting to pop through the skin. Brocs body does not accept any foreign matter easily.

We did meet our new hematologist. She is a mom and gets all the crazy mom stress of having a child that is medically complex. We went over all Brocs history and how he has been since coming off his IVIG.(This was the immune therapy that was helping to keep Brocs body stable.) Lots of things have been happening since Broc has stopped taking this. His tics have increased in intensity, he is tiring more easily, his body is not able to manage all the many viruses it gets thrown with as well. We know this can all be disease progression but the IVIG really helped to keep him more stable.

The hematologist did give Broc another dx - Thrombocytopenia. I think she will be a great asset to Brocs medical team. She was very comfortable with the protocols that we have in place for him. We did test his IgG level and unfortunately it's not low enough for the insurance to cover his IVIG therapy. It can take a while before Brocs level will drop low enough which unfortunately will mean a couple months to a year of high fevers and continual back to back viruses. It will be similar to what life was like before we started IVIG. A continual roller coaster of ER trips and Broc not feeling the greatest. We will be out and about when he does feel good and home resting when he doesn't. At this time he will be more susceptible to getting sick than in the past. He will continue to wear a mask whenever we leave the house. We will be living the fine line between enjoying life as a family and keeping Broc healthy. The IVIG wasn't keeping him totally virus and fever free but it did help with keeping his counts a little higher and with his overall health and well being.

Broc unfortunately ended Saturday night in the ER. He didn't have a fever which was a good thing and a bad thing. Good because we were able to come home and bad because we didn't know what was going on. He was feeling really weird, blurry vision, nauseous, belly pain and of course pain in his shoulder and chest. We are thinking he has a virus. They think the virus has effected his muscles. His counts are a little low too but not in the dangerous level. Saturday night felt like de-ja-vue from a couple years ago.

Broc has a procedure on Friday to get a new GJ tube. They will also be looking at his central line as some of the stitches are bothering him.

Thank you for all the continued love and support for our family.
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