Krysten: Making GREAT STRIDES!

I woke up this morning and checked Facebook.  Krysten had been "liking" things and changed her profile picture.  I knew that was a great sign. 

I got ready for the day and headed up to Hopkins to spend the day with Krysten so Patrick could go to work and get some work done.  I got there around 8am, and didn't leave until almost 7. 

When I got there, she was wide awake watching TV.  During the morning, she had chest PT (for the CF) and the Dr.'s did their rounds.  The Dr.'s asked her to move arms, legs, tell them which arms they were moving, etc.  She did perfect for all of it.  Her CF Dr. also came in and checked out her lungs, in his opinion all seemed great there and he was OK with taking the ventilator out. 

In the end, the neuro team decided to keep the ventilator in for the day.  They were concerned with the last two chest CT's because they seemed a little cloudy (pneumonia).  They decided to change around her antibiotics to ones that would clear any pneumonia she might have.  They also decided to send her for another chest CT.  We still haven't gotten the results from it.  After talking to Patrick this evening, he thinks it really depends on the person reading the CT scans.  Sometimes he hears she doesn't have it, sometimes she could.  Last night he requested the CF Dr.'s come look at it because typically people who have CF have different looking CT scans (as in they tend to look cloudy to begin with).  But I understand that neuro is just playing it safe by changing her antibiotics around.  It sounds like tomorrow they are going to attempt to take it out.  Fingers crossed! 

During physical therapy this morning, the therapist asked if Krysten wanted to sit up in a chair later.  She shook her head yes.  The therapist then asked if she wanted to try and walk too, she eagerly shook her head yes.  Now, I was kind of taken aback by this.  The last time she was in the hospital it was like pulling teeth to get her to walk sometimes (and she didn't have the vent in then).  She was a lot weaker then as well, but I was still expecting her to say no.  The therapist came back a few hours later and told us she'd be back at 3pm to walk. 

From about noon to 3 Krysten did a lot of sleeping, there wasn't much action going on with people coming in and out either.  She was sleeping for about an hour and I decided to go out to the waiting room and grab a drink and snack as I didn't want to eat in front of her.  Imagine my surprise when about 10 minutes later my phone is ringing and it's Krysten.  She can't talk because of the vent, so I answered it and told her that I was in the waiting room, and I'd be right back there.  I hung up.  She immediately called back and I said "Krysten, it's a long walk back to the room but I promise I am in the hallway and would be there in 10 seconds."  I waited for her to hang up this time and she did.  LOL  Turns out she wanted her ice water.  

She can't drink anything since she has the ventilator in still.  With her water she gets these little sponges on a stick that she is allowed to out in her mouth.  Earlier today at some point she was bugging me to get money and go to the cafeteria and get a drink.  Bless her soul, I can only imagine not being able to drink when you want.  I felt so bad being the "bad guy."

Around 3pm, PT came back and got her all set up to walk.  There was a lot to do to get her ready.  They had to get a portable ventilator, a portable machine that watches her stats like BP and heart rate, and her IV stuff.  When we finally got ready, there were 4 people around her pulling stuff and making sure she didn't fall.  She got up, walked about 4 steps, and sat back down in a wheelchair because she was lightheaded.  A few minutes later she was up and at it again and walked about 8 steps.  She got to the doorway of the room and sat down again. 

She was tired by now and said she was done.  But.. not before she tried to sucker us all into going to the cafeteria to get a drink.  I bartered with her and told her we would push her down the hallway in the wheelchair and back if when we got back to the doorway she would walk back to her bed.  Haha.. it worked!!  All in all she walked somewhere between 20-25 feet all with the ventilator in.  I am so proud of her!! 

She was really tired after this little adventure.  She rested some, but is having a hard time really sleeping which is understandable. 

After awhile, she was up and watching TV again.  She asked for her ice water a good bit as well.  One time I caught her with her mouth wide open with the two hands around her cup getting ready to try and drink.  That didn't go over well when I said "no way, no how."  She gave me the evil eye.  Bad sister moment again.  She just can't do it with the ventilator in and the risk of aspirating. 

Compared to three days ago when she wasn't responding to anything.. she is making GREAT STRIDES toward healing.  She's also still got her feistiness in her, that's for sure. 

Krysten, I loved spending the day with you!  You are an amazing gift from God and you are doing amazing things in your recovery.  I am so proud of you.

Thank you all for the messages and prayers being sent.  They are definitely working.  Praying she can get the vent out tomorrow :) 

Laura