Tuesday, November 24, 2009

5th Tuesday in the Hospital

Hi, Kristen here, bringing you...

Words from Jill:

This is our 5th Tuesday in the hospital!! Our 29th day. Amazing! While part of me feels like it was yesterday, a lot of me feels like this has been forever!

Last night was a rough one for Matthew. He hasn't been sleeping very much. One of the medication's side effects is insomnia. At 2am, he finally quieted and slept. His O2 stat's dropped to the low 80's. As the nurses came in, I opened his eyelids, and his pupils were pinpoint. When it is dark (like when your eyes are closed) your pupils should be bigger and should react to light. His were so small, they only were able to react a little bit. That scared the nurse, and she tried to wake Matthew up. He was virtually unresponsive. He would only flinch when you rubbed your knuckles across his chest. He didn't even wake up. He was this way for 30 minutes. They called the doctor and he didn't want to load him, but just watch him. It was scary, because while he wasn't looking like he was having a seizure, they thought he was having a seizure. At around 25 minutes, I heard his breathing deepen, and I turned the light on, and said "Hi, Matthew!!", and he opened his eyes and smiled at me! Unbelievable! Scary for me, and the nurses, too! He did this two more times through out the night, so it wasn't a very restful night.

This morning the doctor, nurses and dietitian made a last minute decision that they wanted Matthew a little more healthy than where he is right now before they start the diet. While I was disappointed, I understood. They just want Matthew to succeed. We still did all the teaching today, and I learned a ton! I have a lot of information to process; but we are ready to go when Matthew shows us he is ready.

This afternoon, Dr. F decided it was best to hook Matthew back up to EEG for a bit to see if we can catch these 'episodes' where Matthew was unresponsive. Right on cue, as soon as the leads were hooked up, he did it. FOR 35 MINUTES. We had 4 nurses, the floor manager and the PA in the room. Everyone was bustling around his little crib, trying to wake him up. They called the doctor and he watched the EEG. He said, get this.....it WASN'T a seizure!! He thinks he is getting so little sleep, that when he is asleep he just goes into a very deep sleep, and since he still has some residual pneumonia that that is why his sats drop a little bit. I was so thankful. I was wondering how I was going to know if he is having a seizure in the middle of the night when I'm asleep. So GLAD for so many reasons!! So good deal, we just have to get this pneumonia under control a bit more and then we are go for takeoff (of the keto diet!)

Seizure wise he is having only "simple partial seizures" now. Simple means he is still alert and partial meaning one-sided. Dr. Frost doesn't want to increase his medications for these. He is the most coherent we've seen him. It's nice to see a bit of my baby coming back. Tonight I think I can say, that we may be on the upswing of things. Praise Jesus!!


Please pray for Thomas' family tonight. I've told you about them in the past, we met his family in the PICU. He went to sleep in Jesus this afternoon. Pray for this grieving family. Also, I just found out that a classmate of mine from highschool (PVA...I went there my junior year) lost his wife today from a sudden heart problem. I also went to school with her, and she has three small children. Pray for this sweet family too! There are so many hurting!!


Kristen said...

Matthew is an ornery one, making so many jump and surround his bed like that! Holy cow, your heart must have jumped into your throat when he was unresponsive!

I imagine that if we had a conversation with Matthew about all this drama he likes to perform, I believe he would say, "That's how I roll". Tell him he really needs to pick a new style. And then tell him we love him! :)

Kristen said...

I will be praying for those dear families you mentioned.

Sherri said...

So sorry to hear about both of those families and right before the holidays...just heartbreaking. We will be praying.
I will be so glad to report to our church family tomorrow night that Matthew is doing better! We will be praying that he kicks the pneumonia for good and can move on to the new diet.
What a little fighter you have! He must be so incredibly tired.
Our coffee date is getting closer :) And whenever our family prays together for Matthew- Greta talks about our little picnic we had at the park!
Can't wait to see you both in person!
You have our love and prayers :)

Zoe said...

Still praying! Great news that Matthew appears to be on the upswing.

I will be sure to say special prayers for the families that you mentioned as well.

Josephine said...

My heart aches for those two families - what an awful, awful thing to have to go through. I wasn't expecting to start my day with tears.
I am so glad to hear that those scary sleeping episodes were not seizures! You must have been terrified! I pray that he will soon be well enough to start that diet, and that it will do the trick and get you home.

Lisa said...

I always feel so helpless as I sit here and read your updates...I want to help somehow, yet can't be there with you to give you any help or support.

I was relieved to hear that Matthew was just realy sleepy and that he isn't having some sort of silent seizure.

So sorry to read about your dear friends. I hope that they can find peace and comfort.


Tyler said...

It is so scary when you have a team of doctors swarming your childs bed. But then there is also some comfort knowing that there are so many people helping your child and trying to figure out what's wrong. I am glad to hear that those episodes are not seizures. I pray that the pneumonia clears up, so he can start the diet.

Diane, Tyler's mom

Tara said...

I am so glad to hear that he wasn't have a silent seizure. Those are scary. That's what Michelle suffered from. Im praying for Matthews health to improve and for your sanity. Our kiddos love to make us crazy and keep us on our toes don't they?! Happy Thanksgiving!

therextras said...

You have a big heart, Jill ~ thinking of others while you have ample to manage.

I am soooo pleased to read about an upswing, and was holding my breath til I read that he woke from that scary slumber.

Prayers, Barbara

Chrissy said...

What a roller coaster....I am excited that overall things continue to look more positive for Matthew...I look forward to seeing his smiling face soon!

Thanksgiving Thoughts...
"Give thanks to the LORD, for He is good; His love endures forever."
~1 Chronicles 16:34