Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, November 01, 2015

Intensive care

*note this post was written on my phone over the course of 8 hours. Lots of typose and time lapses I'm sure.
....................

I'm sitting in the intensive care unit with Angela who is unresponsive. I'm a bit stunned we have come to this point.

I recently said to someone that Angela has not been right since the day of her surgery on October 6th. She was her usual bubbly self as she walked herself into the OR. But something happened that day, and it now seems as if its more serious than any of us were aware.

She has been so off. So lethargic. Struggling to stay awake more than a couple of hours. Falling asleep everywhere and generally jusy struggling to stay awake. Ambulances have been called to school when they couldn't get a blood pressure on her, and just yesterday the blod pressure monitor I ordered arrived. I was able to get accurate readings on everyone in the house, but no reading at all on Angela.  Just a week ago I told someone I feel like she's slipping away from us. Like we're somehow losing her. Like she was swimming underwater and couldn't get to the surface.

We went trick or treating. Angela participated but still in her fog with a few moments here or there when we saw flashes of the girl we know so well. We even let her have a few bites of Ashers birthday cake (mostly frosting that would disolve) but she was too sleepy to enjoy even that.

She had her evening food and about 10:00 I moved her to her bed. But she was sooooo out of it. I told Dean if she was still like this in the morning I was taking her into the ER. Remember, she went trick or treating with us just a few hours before.

At 3:00 am I rolled over in bed and heard very clearly in my ear, "go check on her." I sleep very soundly from my own cancer related drugs. I rolled over and thought I will. In just a few.minutes I will. But again, louder, "No, check on her NOW."

I  went downstairs to her room.her mattress has been on the floor because we packed up all the beds thinking our house was sold. She was on the other side of the room, face in the carpet, arms and legs all contorted the wrong way. I couldn't wake her up! I ran to get Dean to call 911. She was completely unresponsive, breathing but with a horrible croupy sounding cough (later I would be told the cough was because her airway was too relaxed.)

The paramedics came and still no response. It took a bit but they finally loaded her into the ambulance. She became VERY combative but could not follow directions. I followed behind in my van. About 1 mile from home they turned on lights and sirens and took off. Another mile and they pulled over. I was trying not to freak out but my sister was on the phone with me. Finally one of the crew came back to tell me they were trying to get an airway on her and to stay in my car. Then another ambulance came, and that crew ran from thier rig to the ine Angela was in. It seemed like there were 20 people in there! Finally they came back again, saying they weren't going to do an airway. That they were going with lights and sirens with both crews and to just meet them at the hospital.

She was so very combative at the hospital. Thrashing and rolling but unresponsive to anything but deep pain stimuli. Nobody could figure out what was wrong. All i could think of was omg this is the big stroke we were warned about years ago, when she got her make a wish. She had a CT that thankfully ruled that out.

She was moved to ICU. A million labs were drawn including her medication levels, looking for infections, organ functuon. Really anything they could think of. Finally in the afternoon the neurologist came in he said they were all grasping at straws be he felt this was all neurologocal and not organ related. One thing he has seen, only a very few times, is kids who were switched to gtube, and went from oral meds to gtubed meds. Oral meds you dont get 100% of the dose in your blood stream, plus what goes to the stoach is disolved and subsequently absorbed at different rates. But when you switch to gtube you disolve the meds first so 100% of the dose goes to the blood stream. Angela has always been hypersensitive to meds, so it could be for the last month we have inadvertently been over dosing her on the meds! That would make sense that my saying she has been off since she woke up from surgery because she got her meds right on schedule that night, but disolved in the gtube!

She has been hooked up to the EEG all day to rule out seizure activity. It has shown that she has been in the equivalent of a drug induced coma and is just sleeping. The deepest sleep ever. Unresponsive. At about 6:30 tonight she 1/2 opened her eyes. Over the course of an hour she was able to wiggle her toes on command, but not open her eyes. She could not squeeze my hand but shook her head no when asked if she wanted a blanket. I put the ohone to her ear so she could hear Dean talking to her and she managed to mumble "I got a IV Dad." And was back to sleeping.

The doctors here are stumped. The neurologist said he has seen this once or twice before in his years of practice. It is highly unusual, but if you know Angela, that is her norm, to not follow the rules. The nurses keep saying "this is so odd. This is how you give meds to a gtubed person!"

So that is where we are now. She is in/out of consciousness, with "conscious" being a very altered state. We hope to see her continuing to wake up iver the next 24 hours, then can evaluate what if any damage has been done





18 comments:

Jamie B said...

This is Jamie. One of the para's in Angela's class. Please give her a big squeeze for me. I am saying prayer after prayer and thinking about her constantly. God bless you Angela! Stay strong!

Leah Spring said...

Jamie, if you see this comment, she tried SO HArD to open her eyes when I read it your comment to her. I asked if Jamie gets her off the bus and she gave her first smile (eyes closed, but a smile) You must be very important to her.

Tina Tulloch said...

Prayers being said for Angela and all of you. Stay strong x

Jamie B said...

Aw sweet girl! Sending so much love!

ajnachtmann21 said...

Praying for Angela...praying they figure it out!!

Michelle Slater said...

Hi Angela! You stay strong and get well so you can come back to school! I need to hear you sing some Taylor Swift! I'm praying for you and sending hugs!
Michelle

Becky C said...

Hi Angela! It's Becky from Transition Plus!

Hey silly girl! Remember how strong you are! I cannot wait to see you dancing and singing across the room again soon! We won't smile until you are well again! We are all cheering for you! YAY ANGELA!

Cindy said...

This is heartbreaking. I'm praying hard things get figured out and sorted. Much love.

Cindy said...

This is heartbreaking. I'm praying hard things get figured out and sorted. Much love.

Kris S said...

Hi Angela, it's para Kris from school. Hang tough girlfriend. We miss ya at school. You're in my thoughts and prayers. Take care!

Unknown said...

Hi Angela! This is Jenny from TP. You are one tough cookie!! Do you remember the other day when we were joking about Olaf from Frozen? I can't wait until you come back to school so we can laugh again. I will be praying for you!

Tammy R said...

Hi Angela, This is Tammy from school. Big hug from Kelsie and I. I can't wait to see your smiling face at school soon. Praying for a speedy recovery.

Beth S. said...

Hi Angela! It's Beth from TP. Stay strong and get well soon! I miss you at school and can't wait to see your bubbly self real soon! I'm thinking about you and praying for you and your family. Hang in there!

Devon said...

Praying!

eliz said...

We are praying!!! (((HUGS)))
The Archers in St Cloud

Tilly Cat & Pip-Squeak said...

Oh Angela... I hope she continues to recover and that she is back to her self soon! This sounds very scary! Xxx love and prayers from a long time blog reader.

Shirley S. said...

Hi Angela,
This is nurse Shirley, I can't wait to see your smiling face and hear your wonderful laugh in the mornings. Silly girl, we have lots to celebrate when you come back to school.... Right? Give me five!
I know God has you and that's the best place to be!

Lucas Palokangas said...

Hi Angela, sending prayers and hugs your way!! Keep fighting, we all miss you you at TP
Laura P