Jetty has had a good weekend. His seizures were mild and about every 20 minutes. He also slept a lot.
We are working with neurologists to find Jetty's base level (somewhere in between a constant seizure state and asleep) with the correct dosage of medications. Currently, if he is not asleep he is having seizures every 10-20 minutes with the occasional seizure that doesn't stop unless given heavy duty drugs that knock him out. Even when we do that, he sometimes wakes up hours later in the same seizure. Those are never fun to deal with but he ends up coming out of it eventually whether its 2 hours or 2 days.
He has been having stomach issues as well... lots of gas and reflux! He has been having trouble keeping his food down. We decided to put him back on a continuous feed with a rate of 35ml's per hour rather than 100ml's per hour every 3 hours which is what he was up to. The slower rate as well as more antiacid meds have seemed to help control his gas and reflux as he hasn't spit up in more than 4 days.
Jetty was supposed to get his PEG tube pulled out of his belly and replaced with a button snap last week at Hopkins. We went to the appointment all ready for the button and the GI Doctors told us they want to wait 2 more months. They also said that they want to remove it endoscopically which involves the O.R.. They haven't set our appointment for the procedure yet.
We are back at Hopkins on Wednesday to meet with the Neurologist who wants to figure out whether we change Jetty's medicine or try the Ketogenic Diet again. We are hoping for a medicine change!
9 comments:
sending all 3 of you some peaceful rest...fall.
Thanks for the update. I was wondering how things were going. I see Grandpa Fleets pretty often but he usually has a drink in hand so I don;t want to bug him with questions. Jamie, you are so BEAUTIFUL!!!
Hello Fleetwoods! I have been following your blog and am so touched by Jetty's story. I would love to offer you a free photo session with my sister, who is a family and child photographer. Please feel free to visit her website, heathergracephotography.com, and you can contact her through there if you'd like! The session and photographs will all be donated by our family as our way of encouraging you during this journey. If you have any questions at all, please feel free to e mail me at alwilson4@liberty.edu.
I hope to hear from you,
-A
It's been a while since i checked in, but Jetty and his family are always in our thoughts. lots of love, Megan & Casey
Hi Jamie, can you shoot me an email, I lost your email address. I am yohon511@hotmail.com
Megan has done some fund raising on her own for Jetty and we would like to arrange a date to get together with you so she can give it to you and Jetty. love and hugs, Jeni Deitterick
HAPPY HALLOWEEN!!!! We hope all is well and just wanted to say hi. Sorry we missed Jetty's big event, but we were out of town with Mackenzie's cheer squad at a competition. It sounds like it went welll....we were thinking about you. Hope to see you at least over the holidays. Big hug and kiss from Mackenzie and Kyle...take care. xoxo Wendy
happy halloween!! i dressed as a piggy and watched the parade today with your aunt allison and cousins.
thinking of you,
love,
lizzy assante
if anyone deserves an extra hour of sleep it's you jamie! don't forget to set your clocks back!
Thinking of you all often. Can't wait to get back to CT and see you. Hugs to everyone, Randy and Nancy
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