Yesterday we had Ethan's pulmonology appointment with Dr. Royce. The appointment went fairly well. Dr. Royce claims he is disappointed with the lack of progress on Ethan's lungs. He sounds a little better when he listened to him, but he still has a nasty wet cough that just won't go away. We are surprised that all these treatments haven't cleared it up much yet, but we're going to keep doing them until surgery anyway. That being said, he cleared Ethan for surgery officially. He said that it would be riskier trying to hold off on surgery until his lungs were clear. That would have us exposed to cold/flu season and Ethan ALWAYS struggles with lung issues during the fall/winter/spring most of all. He also officially diagnosed Ethan with chronic lung disease. According to him we're going to be using the Smart Vest and doing breathing treatments on a more prolonged basis. Ethan isn't pleased about that decision one bit.
Today we went back downtown and had our surgery consultation with Dr. Stewart. During this meeting we went over all the plans for the new surgery and the reasons for the change. There's really nothing new to tell, but we did go over all the details. Surgery will be open heart through his sternum again. This will be his third chest opening so of course there will be a lot more scar tissue to deal with. He'll have to be on bypass and they expect to have his heart stopped for about an hour. We're not sure yet whether his aneurysm will be addressed during this surgery, but we did bring it up and depending on exposure and how Ethan's doing they'll see what can be done.
They said we can schedule surgery anytime from Monday on. But is had to be soon before germ season hit. We chose September 4th. That allows us to do our open houses for schools, do pre-K evaluation, I can be home for Callie's first week of 4th grade, and I can attend her first soccer game of the season. :) This makes me very happy since I was so concerned about missing so much that week. September 4th is officially the date - and Dr. Stewart commented that Tuesday is his favorite day for surgery anyway. :) Hopefully that's a good sign.
Now I guess we'll move onto the Walk for Wishes we participated in. This was a fundraising walk at the Cleveland Zoo to raise money and awareness for Make-a-Wish. It was a lot of fun and there were lots of activities for the kids to do. Callie's Girl Scout troop participated with us so that made it extra special for Callie.
When we arrived the Make-a-Wish booth gave Ethan a special "Wish Child" shirt and "Wish Family" stickers for Callie and me. We went into the zoo, met up with Callie's friends, and did the 3 mile walk around the zoo. A lot of the exhibits weren't open yet since the walk occurred before the zoo actually opened, but it was still fun. We were able to see some animals out and about.
After our 3 miles and little stop on the playground, we ate lunch and played games in the pavilion. They had a man blowing up balloons for the kids - Callie picked an elephant holding a heart and Ethan picked a basketball hoop and ball. The balloons turned out pretty great! There was also face painting, music, food, group photos, and little games and prizes for the kids.
Callie opted for a butterfly for her face painting, and to no one's surprise Ethan went for a truck and a garbage can. That boy's obsession with garbage is crazy! LOL The girl doing his face said she never got that request before! :)
After that we went over to the Rainforest part of the zoo to check it out. The kids had a great time in there! They especially loved the little monkeys - there was a tiny baby one in one of the exhibits that they thought was hilarious. He was climbing all over the other monkeys and getting into all kinds of mischief. Reminded me a bit of a certain little someone I know... ;)
By afternoon we were all pretty wiped out so we headed home to relax for the rest of the day. It was a great time and we definitely will be doing it again next year. Hopefully we have an equally great or even better time at our Congenital Heart Walk this October 6th! It's at Wade Oval Park in Cleveland. We're doing a team again this year. More information will be coming along with a link to sign onto our website to join our team or donate. Also shirts will be made again so I'll have that info out soon too.
On a side note, please say an extra prayer for a woman who lost her little boy Pierce yesterday. He had Heterotaxy just like Ethan. He was a little over a year and died in his sleep. I know she's just heartbroken and it hits close to home since one of Ethan's defects is the same thing. :(
Also another one of Ethan's heart buddies, Kolsen, recently had surgery. He's not feeling well right now post-op, so some additional prayers for him would be really great.
Please keep us all in your thoughts and prayers. This is going to be a very hectic next few weeks getting all the necessary appointments in pre-op as well as trying to squeeze in our summer fun and prepare for back to school before surgery! Please pray that his lungs improve so that can be one less concern for this whole surgery and it would mean for an easier recovery time post-op. I know with his lungs the way they are now he's at a MUCH higher risk of getting pneumonias and problems post-op. All of your prayers and support are very much appreciated! I'll try and get the rest of our summer fun (family vacation, Indians game, etc) posted up here soon! :)
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