Wednesday, August 26, 2009

Not good.

Kendall cried a lot last night. Nobody could figure out what was wrong. I tried to sleep but couldn't so spent the majority of the night holding her and trying to make her stop. It never worked.

The last thing I remember is the Respiratory Therapist coming in around 4:30, then shift change. I must have finally passed out to the sound of Kendall breathing. The next thing I knew, she was making a really weird noise. I went to the bathroom to brush my teeth and then was going to tend to her.

I went to brush my teeth. I was BRUSHING MY TEETH while my daughter had the worst, Tonic Clonic seizure I have ever seen EVER. It lasted...brace yourself. An hour and 15 minutes.

The med they were going to put into her IV was quickly ordered. Then they discovered she had blown her IV. They couldn't find another place to put another one. Two others were called in, then in the mean time they administered the Diastat. Twice.

Then the chaplain, IV team, every available nurse entered the room. A crash cart was ordered, and I shut down. All I could manage to do was pray.

It finally stopped.

Justin's here now.

She's finally awake and smiling.

The chest x-ray came back normal, but I think she may have another ear infection.

Back on Klonnopin we go, and we will continue the Ketogenic Diet.

The head of the Endo department came in and explained his experience (THE ONLY ONE IN THE US) with Ketogenic Diet and Diabetes. It finally became clear to me how we are going to manage this. We will measure her Glucose in her blood on the same meter as her blood sugar. Our acceptable numbers are quite different from a usual diabetic.

He also is on the Mitochondrial Disease band wagon. But we are treating things as they arise. One day at a time. Her lactic acid levels are OK...right now.

The Epileptologist on call mentioned Kendall's retractable seizures are the most complex to control. He also again mentioned surgery could be a course of action still (he's new,and young, and optimistic) Apparently our expectations for Kendall to be seizure free are a long stretch. I refuse to lose hope. She's a fighter and we are too. We will get through this.

I was assured that the Neurology and Endocrinology teams at Cooks play well with each other in the sandbox, and share their toys. Time will tell.

Please pray nursing is approved by my insurance. Though my attitude may change in the next few days when things still sink in and I have had some sleep, it is going to be tough.

We aren't going home any time soon.


Anonymous said...

Prayers, prayers, and more prayers being said. ... and they will continue to be said. He will provide you comfort and strength and get you all through this. Keep fighting Kendall. Keep being her most important and strong advocate Jocie. I hope you get some most needed rest right now.


Hugs to all.

Susan Smith and Family

Jill Calvert said...

Oh my gosh Jocie, I am so sorry ya'll are having to go through this...I have to wipe the tears every time I read what Kendall is having to endure...She's a fighter...Like her Mommy!!!
We love you guys....I will be up there tonight to see ya"ll..xoxoxo

Cjengo said...

Gees Jocalyn, I am so sorry you had to go through that. I cannot imagine how scary that must have been. I am praying hard.

Anonymous said...

Hey Honey! I'm so sorry that Kendall is having to go through this,but like Jill said,she's a fighter....There's not a second that goes by that I don't think about you guys....It sounds like there is a lot going on with doctors,so I'm going to stay put until you need me or need anything at all....I can also help out with Kamden,so please call me....Everything is going to be okay...I just know it! She's our little DIVA in training....:)Diva's are stong and they are fighters...This group is anyway...

Anonymous said...

That last message was Liz by the way....

Reagan Leigh said...

Certainly not the news I was hoping to hear. I can only imagine how scary that must have been. Tonic seizures scare me to death, and a super long one like that, terrifying I'm sure! I'm so glad to hear that she pulled through it and looks/feels better now. I know you probably feel as if you've aged 20 years in the last couple days. Hang in there. Sending lots of prayers your way!

Dayton and Kylie said...
This comment has been removed by the author.
Sara said...

I am so sorry to hear about Kendall. I want you to know that we all love you and will continue to send lots and lots of prayers your way. I will see you tonight!


Amy said...

I'm sorry that you guys are having such a rough time....I'm praying for Kendall and your entire family...I'm also going to put her on our prayer list at church and a Christian site that I am apart of, along with my own blog...we're all rooting for you baby girl!

Anonymous said...

Praying for Kendall and her family.