Day 22
GOOD NEWS!!!!
The infection is under control and the incision will continue to heal. We will return in 3 weeks for another checkup and Dr. Hanson said that the incision will take longer to heal but it will heal. We will have to be vigilant about care, though.
Yesterday morning when I went in to check on Shelby, she was in the middle of a full tonic-clonic seizure. It is impossible to know how long it lasted. It was not more than 5 minutes (that I timed). (Rescue medications are used if the seizure lasts more than 5 minutes.) While we were in the hospital, the Neuro team did not follow the instructions of her private Neurologist. Then on Sunday, the 29th, Texas Children's Neuro team then encouraged us to change her medication to a new version of her current medication due to the fact that her previous oral medication was almost non-existent in her system and she had been on an IV for 6 days. Naturally it was a Sunday and we could not reach our Neurologist. We decided to make the change and contacted our private neuro, Dr. Ian Butler, on Monday. He likes the new medication but was not happy with the dose that the hospital team used. He asked me to ask them to update the dose and he was surprised they did not known better. Well, we paged the team and made our argument, they assured us the dose was correct and that Shelby would be fine. Well, they lied. She was not fine and 15 days later, yesterday, she broke through into a seizure and at bedtime last night, she felt like she was going to seize again and called us to her room. She was very shaken and upset because you feel so rotten after your body goes through that whole process. We did contact our Neurologist and made changes, we hope for the better. Are you wondering why I didn't make the change after we left the hospital? Well, I was so overwhelmed by all the information and surgery itself, that I believed them and wanted to hope that Shelby could stay sub-theraputic and not seize. (Seizure medication makes your brain sleepy) Shelby said she wanted to call the TCH Neuro team and give them a piece of her mind. (If you want names, email me. It was not Dr. Zeller)
We are happy to be home and we will hold on to the hope that we will not have to go back to the hospital. Everyone stay safe and Happy Valentines Day.
All our Love,
Kim
posted by Kim Newhouse @ 7:35 PM
5 comments
5 Comments:
Kim, what a ride. Well, now you made me cry! Sorry you weren't able to give her the kind of hug you both needed after that. The 'never let her go' 'like there's no tomorrow' kinda hug. Wish I could be here, but my heart is with you. I check in each and every day looking for updates. You and Shelby, and the rest of your family, are in our prayers. Good news the infection is under control. Let's pray for no more set backs and quick healing.
Hi Kim,
So sorry to hear about Shelby's seizure. I can't imagine how scarey that must have been. We are so happy to hear the infection is under control. Shelby's continues to be in our daily prayers. (Top of the list in fact!) Stay strong, God loves you and so do so many others!
Love, Tiffeny and family
Shelby,
I know that you do not know me but my name is B.j. and I attend church with your sweet grandparents at Memorial. I remember when you would come to Memorial as a little bitty child and always remember the way your mother always dresssed you and your sister. You always looked adorable. I just want you to know that we are praying for you and pray that your recovery will be swift and without any setbacks. I know that you are a strong girl and you will get through this. Continue to look to God for strength and support and know that God loves you and we all love you.
Love, B.j. Maddox
HEY KIM AND SHELBY!!
LIFE IS JUST TOO TOUGH! HANG IN THERE AT LEAST YOU HAVE THINGS UNDER CONTROL BECAUSE KIM YOU ARE JUST PLAIN AWESOME!
SHELBY IS SUCH A BLESSING AND SO VERY BLESSED THAT GOD CHOOSE YOU TO BE HER MOM.
LOVE YA
NANCY
In no way can I imagine what you, Shelby, are going through - and Kim and Mike, how you must feel.
You all are such strong, faithful people. Your endurance and courage are endless.
All I can do is thank God for being by you and in your heart. Only that level of power could manage what you are going through.
Love, Aunt Edna
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