Infection Update

7/6/2008

The past 22 hours have been incredibly disappointing. Disappointing because Jessie was on such a roll and doing so well in therapies. Now she will be somewhere to 1 to 2 days behind. We are still in Johns Hopkins Hospital, back to our old room on the 4th floor, awaiting results from blood and CSF cultures. Initial blood and CSF tests were normal. Our Infectious Disease doc came back and swabbed the site - we should have some news about what type of infection is going on by tomorrow morning. Cris came to give me a break after lunch.

There is some good news and a funny story to help brighten our little pity party!

* Jessie is doing great - no fever, no pain, just bored and ready to go back to Kennedy Krieger. We need to tape her saying this so we can play it back to her in a few days when she's preparing to go to therapies!
* We had a very nice visit from Lisa and Rebecca Yim this afternoon. Rebecca is 14 and had a right hemi when she was 7. She is a beautiful young lady and the visit from Rebecca and her mom really made our day.
* Early on in our ER adventure last night, Jessie announced out of the blue that God likes to help us - don't you know? Cris and I both replied that, "Yes! You are right!" and then Cris asked Jessie how she wants God to help her - both of us totally expecting a plea to get out of the ER or a request to go home. Jessie replied, "I want Him to clean my room!" I always knew Jessie was a very forward-thinking girl!

Cris is staying with Jessie tonight and plan on calling it a night early. I think I will do the same. We are looking forward to tomorrow and the blessing of a new day with new possibilities. I know after a good night's sleep, Cris will provide you with fun stories about our wonderful, busy, 4th of July weekend.

Love to you all and thank you for the special prayers for Jessie!

Kristi

At Johns Hopkins Emergency Room

http://www.prayforjessie.org

I've been up all night, and I apologize for the probably typos and grammatical mistakes, but the ol' mind is a bit foggy from lack of sleep due to the ER and late flights for relatives.

I wanted to catch everyone up. Yesterday about 3:00 PM, we noticed a little seepage from Jessie's wound and ask the nurse to look at it. So at about 8:00, the doctor over at Kennedy Krieger ask us to go over to the ER at Hopkins so they could look at it. Hopkins may have a great reputation, but I guess that an ER is an ER regardless of the state or reputation of the institution.

So, it's about 7:00 AM and we are nearing the 12 hour mark in the ER. That just about ties our Cook Children's ER record. Oh well...

So Jessie had blood drawn and an LP (Lumbar Puncture / Spinal Tap) to check for a serious infection. In the interim, they've started her on an antibiotic. They've admitted her back into Hopkins, and now they are looking for a room to put her in. Some of the cultures take 48 hours, so we are looking at a minimum of 48 hours in hopkins and subsequently a 48 hour delay in rehab.

Also, because that part of her incision is not healing like it should, there is a cosmetic issue at that spot, which is unfortunately right in the front-top of her head. Hopefully, they will address that as well, or I'm sure we will have to look at cosmetic surgery of some sort. The rest of the incision looks incredible.

I'm off to bed so that I can relieve Kristi in a bit. The neurosurgery team should be by sometime this morning.

Many of you will be in church today, so please pray that the infection is superficial and that Jessie gets back to rehab at KKI quickly.

God Bless You,

Cris


http://www.prayforjessie.org

Duck-Pin Bowling

http://www.prayforjessie.org

Evidently, here in the Northeast, there is a thing called Duck-Pin Bowling. It is similar to regular bowling, except that the pins are little and the balls are little and you get to throw 3 balls per frame. So Kennedy Krieger Institute rehab center took all the kids out to bowl. They let us tag along, and let the boys bowl too. It was a blast for all the kids.

Thanks KKI. - Cris

My Brothers are Here, Horray!!!

http://www.prayforjessie.org/

Horray!!! My Brothers are here. I'm so happy that my brothers are here. I've missed them so much. Their plane didn't get in till about 2:40 AM from Wyoming, but they're here!!! I love my brothers! Even though they're stinky....

Hugs for everyone!


The whole gang, Gramm, Matt, me(Jessie), Jake, Josh, Dad, Papa, Mom.
Relaxin' in the hospital bed and watching cartoons with my brothers...almost like home.

Please don't leave.

This is "Hank the Therapy Dog". He's my buddy.


The Shelton's, from Aledo, brought pizza tonight, and we had a pizza party. Parker goes to Johns Hopkins University, and he met us at the airport in June with ballons. His mom and Dad, Lyndi and Doug, came by for a visit tonight and it was so much fun.

http://www.prayforjessie.org/

Jessie and Macey

http://www.prayforjessie.org

I'm going to blog a little early today, because tonight (my usual blog time) I'll be picking the boys up at the airport, and wanting to spend time with them and not on the computer.

I have some GREAT news today for both Jessie AND Macey!!

Jessie can lift her left arm now!!!!! Can you believe it!!! All you have to do is tell Jessie to show her muscles and she lifts her left arm like she is doing a body-builder bicep pose. It is hard for her, and she can't leave it up long...but she can do it!!!! My whole life I have seen things and not given credit where credit is due, but this one goes up to Our Father in Heaven!!!! How can you take out the central motor control of a brain and have the other side take over! Praise to God!! and thank all of you for your prayers! They can be answered.

And speaking of praises to God. This one goes out to the Man Upstairs as well. Today, I talked to Tim (Macey's Dad), and he said that Macey's pain is gone, and that she was downstairs in the playroom. Her lab numbers are great, and the doctors can't explain why she is doing better. She is moving to KKI today!!! I'm at a loss for words...really. Thank You for all of your prayers for this sweet girl. Keep'em coming. I wish that you could all meet her. She is such a sweetie and you would just want to pick her up and give her a big hug.

Dear Lord, Thank You for today's Blessings!! - Cris