Fontan Day 14:
5:07 PM This post was intended to be a photo of the three of us on our front porch. We were discharged this morning and were looking forward to surprising McCanless at home this evening. We got the clear from cardiology after chest tubes were pulled and her echo was clear. We had a follow up cardio clinic appointment set for Tuesday, discharge instructions and the car packed and ready to go. We took photos with our nurses and hit the road around 11 AM. It felt so nice to be in the car with Mary Clare and heading home. The sun was shining beautifully, so we decided to celebrate and enjoy brunch outside at one of our local favorites, Fleet Landing.
The warm breeze blew her blonde ponytails and she watched dolphins dance in the ocean. She crawled up into my lap to take a rest, I thought. Moments later, Mel noticed her seizing. The events that happened next were no short of a nightmare for both of us. She stiffened and seemed to be in pain, which made Mel think it was her heart. We realized quickly it was a seizure and within minutes, a nurse, a doctor and paramedic who all just happened to be at Fleet Landing from separate parties were at her side, checking her pulse and her chest for breaths and calling 911. Her convulsions stopped after about 2 minutes and she lay on her side while bystanders crowded. She wasn’t breathing and grew pale white with silver blue lips. Time stood still. I just knew she was gone.
Mel was already on the phone with our cardiologist and we were told to go straight back up to 8D. We refused the ambulance so we could skip the ER. We left Fleet Landing after she slowly gained consciousness. In the ambulance leads had been placed, O2 and blood sugar checked. She was stable enough for the drive back to MUSC. It’s funny how your brain continues to work even when all you want to do is concentrate on one thing. As I held her in my arms in the back of our car, I noticed everyone on the street. Most were tourists enjoying the warm, sunny day in beautiful Charleston. I couldn’t help but notice their colorful clothing, big sun hats and cameras. I imagined they were shopping and chatting about the rich history of the city. Couldn’t they see that I was devastated? Couldn’t they tell that Mel was driving like a mad man to get our baby back to the safest place for her? Everything was in slow motion.
We are back in our room now, Mary Clare is sleeping (which is typical after a seizure) and we’ve already talked to two neurologists on-call , her surgeon, Dr. Bradley, and one of her cardiologists. Depakote, a daily medication to prevent her seizures is a must at this point. It will be a slow process to get her dosage/amounts adjusted for her, but we’ll begin tonight with her first dose at 9:00 PM. At least we have a plan for now. Soon she will wake up and not remember any of this. She may wonder why we are back at MUSC.
Her medical team strongly feels that her seizures have nothing to do with her heart. She has Hypoplastic Left Heart Syndrome. She has Epilepsy. Her heart is fine. (It’s just half sized.) Her brain is fine. (It just likes to have seizures.) She’s on daily asprin and meds for her little heart, and now she will be on daily meds for her little brain. God just decided to give me a wonderfully complicated, high maintenance baby girl. (Good thing He gave me Mel to learn how to deal.)
15 Comments
Katie McKorell Liddle on April 10th, 2011
Oh, Kerri, my heart goes out to you!!! I will continue to pray for you, Mel & Mary Clare!!! Glad y’all decided to stop by Fleet Landing for lunch before heading straight home. You do have answers now and your decision whether or not to put MC on antiseizure meds has been made for you. She is a special girl indeed… no doubt. The spunk and all is well-earned!!!
(((hugs)))
Katie L.
Misty on April 10th, 2011
Oh my sweet friend. I am crying, of course and can only feel an ounce of your fear and pain, especially in the moment that your baby was in your arms and the events that happened today. You and Mel are so strong and always have been. Be rest assured that I am praying so hard for all of yall and am here for whatever you need. I love you! What a special princess God has given you.
katie on April 10th, 2011
What a very scary experience for you, so very sorry for another episode for MC…hoping the medication will do the trick for her and you’ll be home very soon. Things never go as we plan them, do they? But God is still good. Praying for you and especially Mary Clare.
Betsy on April 10th, 2011
Ditto to what Misty said. I’m at a loss for words my sweet friend… So sorry but glad she is okay. Love you!
Bree on April 10th, 2011
Oh Kerri….I’m so thankful she is okay. She is one strong little pinkalicious angel!!
Judy Brown on April 10th, 2011
Dear Mel and Kerri,
I have nothing new to add to what others have already said, except to say Thank God that it happened when and where it did. If things could have been worse, it could have happened on the interstate, closer to home than to MUSC. You were right where you needed to be to get the help that you and MC needed. Got my pink pajamas on again, and still praying for all of you. Love and more love sent your way. Just wish there was something more practical that I could offer you.
If there is anything more I can do, I hope you or some of your family will let me know what your needs are. I am ready and willing.
Judy
ghorlbeck on April 10th, 2011
Kerri & Mel,
Our hearts go out to you & Mel for this extremely frightening experience with sweet little Mary Clare today! Y’all must be exhausted as well from such a wonderful high to a painful & disappointing low! But thank God Mary Clare is okay and on the road to treatment for her seizures now. We continue (as many from our church have been) praying for all of you to be well and home soon! If you are going to be staying a few more days at MUSC and you’re up to it, call me and I’d love to come by for a quick visit if it suits – just a few minutes away. But I certainly understand if it doesn’t work out. We’ve been keeping up with Mary Clare’s progrees all along and have enjoyed reading the daily logs – makes us feel closer!
With much love & prayers,
Gretchen & John
Happy Heart on April 10th, 2011
Please know that we are praying for the pinkalicous princess and her mommy & daddy! We are sooo thankful that she is okay and that you were so close to MUSC. Praying now that the medicine will work and that it goes down easily.
Heart Hugs,
Jeannie Fuller
Lee Wilkes on April 10th, 2011
I too have nothing wonderful to say other than I absolutely cannot imagine what that was like for you and Mel. Your faith will certainly carry you through this journey, as it has her heart journey. I love you and am PRAYING for MC and you guys.
Shannon on April 10th, 2011
Oh my goodness! I am in tears. I was so excited to read that you all were on the way home…
Praying hard for your sweet girl and all of you as you get her meds under control. Hoping you’re able to head home soon…all the way home, to stay!
Tammy Willis on April 11th, 2011
I so wish there was something I could do for Mary Clare. This sudden change in plans has probably gotten her a bit confused. I continue to pray and hope that yall are home very soon. Just happen to be in pink today!
Alli on April 11th, 2011
This sounds absolutely terrifying. I can’t even imagine the emotional roller coaster that you are all riding between her heart and seizures. I know it was something you wanted to avoid, but I hope that her doctors can find the right balance of seizure medications so that she can feel like herself, but still be safe from these scary episodes! I hope that you are all back on your way very soon!
Lauren Way on April 11th, 2011
How fortunate that you decided to stop for brunch instead of heading home – and that a “random” team of health professionals happened to be seated near you. Your faith is inspiring, as is the way you and Mel lean on each other. Prayers for the entire Pennington family!
Rachel Medlin on April 11th, 2011
Judy took the words “right out of my mouth”; the only thing I will add is that I continue to keep all of you in my thoghts and prayers; as I said last time I wrote–the Lord knew exactly what He was doing when He choose you and Mel to ber MC’s parents. You do a wonderful job!!! I know that must have been terrifying for you. Hang in there!
Lots of love!
Laura Dostert on April 10th, 2011
So sorry for the set-back. I can only imagine how scared you both were through this episode. Glad you are in the hands of some wonderful doctors. We will continue to pray for all of you and hope that you have better days ahead.