What a month!

[J&Jsmomee]

Well, to say the least, this has been a crazy 30 days! It has been good and bad, but most definitely exhausting.
Bad News...Joel has been hospitalized 3 times in the last 3 1/2 weeks (not including Cincy). Today he got discharged for treatment for pneumonia. (his first time with this)

Good News...We made it to Cincinatti last week and were able to get Medicaid to pay!!! We didn't find out until 2 days before we were supposed to leave. It was shortly after Cincy Children's told us that they had to hear something by that day or they were going to cancel all of our appointments and OR time. We were very worried, exhausted from being up the night before in the ER and Joel being admitted for a GI bug, and so it was welcomed news when we received a message that Medicaid decided to pay.
We got there Saturday late and after spending Sunday in the ER trying to replace Joel's Mickey button and praying he wouldn't need surgery to reopen the hole, we finally had a bit of time to relax before all the appointments. Joel had a CT scan first which came back normal (as we had expected) and then we met with Anesthesia dept. for the upcoming OR time. The next day we met the ENT nurse practioner, Dr Wood the pulmonologist and Dr. Putnam the GI doctor. They were great and we learned so much from them that we decided that even if the bronchs didn't give good news, we were so happy to have learned so much about Joel's conditions.
He went to the OR on Wednesday and we're told that Joel has laryngal malasia (which is interestingly what our older son was born with andd what I suspected from the beginning) and had vocal cords that moved in sync and seemed to be normal (not like his orginal diagnosis.) They said that wanted to cap his trach and see if they could take it out, but first they wanted to take one last look once he woke up to see what the cords did. Well, they closed up some. Doctor Cotton finally came in the recovery room (it was the first time we met him) and said they would still try to cap him, but he doubted he'd pass for decannulation. If he didn't they could perform a vocal cord lateralization on one vocal cord (basically pull it back to create more room for air to pass) and it could be done within a month or 2. Well, Joel did beautifully during the first 30 minutes of the first real capping trial (we stopped them on 2 occasions prior because he wasn't feeling well and wanted him in tip-top shape when they started) and then he got really upset and desatted as soon as the docs came to check on him. Oh well, we're still so excited that at least something can be done to get his trach eventually out. He had a FEES swallow test done the next day that showed he protects his airway while eating, and also had an impedence probe done (a special type that checks for acid and other reflux), so based on those we should hear back this week when we can go back for surgery. We're just excited that we're so much farther along now. WE loved the Children's Hospital. The staff was soooo wonderful and knowledgable and the facility was great. It was like walking into ChuckECheese's! Toys and cartoons everywhere! Very kid friendly.
Anyway, I finally had a chance to post and wanted everyone to know the news. Thanks to all who encouraged us to see Dr. Cotton. Now if we can just get him and keep him healthy and out of the hospital everything will be okay!


Susan, Michael's mom- I am soooooooo sorry that we never met up. My husband and I were so disappointed that we didn't get a chance. We had hoped to Sunday, but spent the day in the ER with the G-tube button fiasco. Then Joel started running a fever the next day and didn't want to risk sharing germs with Mr. Michael after his surgery. I sure hope it works out for us to meet again.

[Jacob's Mom]

Lisa, I am glad that things went well overall, and like you said, at least you now know that something CAN be done to get that trach out. I was just looking at little Joel's website yesterday and thinking about him (and what a cutie he is!).

Thanks for the update!

P.S. Poor little Joel sounds like he is having a rough month - 3 hospitalizations! I wil be praying that he remains well from now on.

[christyw]

Lisa - I am so glad to hear good news! I felt such a relief when you said that Medicaid decided to pay - and I know you guys were incredibly relieved! I'm glad that worked out the RIGHT WAY - I think that Joel should get the care, from the best, and that he should be taken care of financially in doing so. Anyway, I am happy that everything worked out and that there is a more definitive path ahead now.

christy

[indiemum]

Whew! I need a nap after reading that Lisa! What a month. I am very, very glad to hear that things are looking up for Joel. It sounds like it won't be long before he is trach free boy. Finally some uplifting news after 18 months of uncertainty. What a little trooper Joel is. Thanks for posting I have been wondering.

Kellyxoxo

[annerae63]

Lisa-
You have had a crazy month! Glad to hear things went so well in Cincinnati-we love it there as well. I'm glad to hear that you like Dr. Putnam-Evan sees him too and I have nothing but good things to say about him. So happy that it all worked out for you.

[Colin's mom]

Lisa,

What exciting news for Joel!! I was very interested reading your post since Colin has BVCP also we will be looking at going up there next year.
Your poor little guy has been quite under the weather lately! Hope he is feeling better and he stays cootie free!

Look forward to hearing more updates about Joel in Cincinatti.