MC News
Today, we visited our local pediatrician to have the last suture removed from Mary Clare’s chest tube site. I didn’t realize how emotional I would be. As Mary Clare and I walked hand in hand to the car, it hit me. She has nothing left to complete from her Fontan! Although her little body still has a long way to go, we are making it. We are here. Finally. No more lines, leads, wires, tubes OR sutures in her little chest. (Visible, anyway.) Nothing. Wow. How amazing it is that merely three weeks ago we were completing her pre-op day. Three weeks ago.
I spoke to her neurologist NP yesterday regarding her Myoclonic seizures that she is having about 8-10 times a day. They are sudden jumps/jerks that she has no recollection of. They concern me a bit, but we have decided to give her current Depakote dosage another week to truly get in her system before we make any decisions. I really hate to increase her dosage because she seems to be having a difficult time adjusting to it. She gets dizzy and stumbles often. She never complains but I can tell she’s not quite herself. Sometimes, however, I can’t tell if she’s being extra MC dramatic because of everything that has happened or if it’s the Depakote, but I’m definitely noticing different mood swings. It could be that she’s three. She’s a girl. She’s Mary Clare and she just had open-heart surgery. Who knows at this point. We’ll take our time and use her cues as to what she needs. I am just so very thankful that she is able to be at home and recovering!
8 Comments
Paula on April 19th, 2011
This is such an amazingly wonderful post! Mary Clare is doing so well. I am sure you all will figure out the seizure medicine. It will take some time, but you are post-Fontan….YEAHHHHH!!!
Andrea on April 19th, 2011
Hooray for being post Fontan!! I hope you figure out the medications. If it helps.. Owen had mood swings and different behaviors for about six weeks post op. Really emotional and just not like himself. Give her time. I am SO excited for ya’ll!
Sissy - aka Sherrill on April 19th, 2011
just good things ahead!
Terri Woodham on April 19th, 2011
We have plenty of time…no rush. Let Clarie take all the time she need to be Mary Clare again. I am just happy she is home-no more surgery.
NONNIE
Rachel Medlin on April 19th, 2011
I like your mother’s take on things, Kerri–let MC take all the time she needs to be herself again. Open heart surgery is life changing in many ways. In fact, it’s my belief that anesthesia always takes a toll on the entire being. She will get there; just keep hanging in there! So glad she’s back home!!!
Happy Heart on April 19th, 2011
Praying for restful, beautiful recovery days for MC and her sweet family!! Your amazing 🙂
Heart Hugs!
Jeannie
Erica May on April 22nd, 2011
Emerson went through some major mood swings and post tramatic syndrome after the Fontan. We are just now starting to see her “old self” It will come! Praying the meds work and that you get to the right dosage for her! I hope to get our little diva’s together soon!!
Love you all!
Erica
Betsy on April 19th, 2011
Yay! I am glad that the Fontan went so well and is BEHIND you! I hope that the seizure meds start working soon.