Friday (PM), November 17th – Monday, November 20th

I haven’t been able to get an update on here for a few days, so there’s a lot to catch up on! I’ll try to be as brief as possible, while still giving you all the details you crave.. and without having to have you spend five hours reading this post 🙂

FRIDAY NIGHT, NOVEMBER 17th

I got to the hospital around 9:00pm and my heart started pounding the minute I walked in Kerrie’s room..Ron and Alisa were there visiting with  Kerrie and they didn’t look alarmed… but I could see, from the doorway, that her right eye was extremely dialeted… but before I totally freaked out I had enough sense to ask Ron and Alisa if Opthomology had been there and had dialted her eye. This was the case.. thank goodness.

Kerrie was very unresponsive and I had to call her name several times before she would even acknowledge that I was there. No matter how hard I tried, Kerrie would not even attempt to speak and just kept shaking her head yes or no. I called Mom about it, but she and Ron both felt Kerrie was probably just very tired as she’d had a hectic day. Physical Therapy had worked with her a lot during the day and even had her out of bed, and sitting in a normal chair, for 40 minutes. I have yet to see how they actually get her out of bed and into a standing position, or into a normal chair, but there is something called a Stryker chair that can fold out into a stretcher, they can move Kerrie from the bed to the stretcher, fold the stretcher up into a chair and then lower her to the floor. This is the only way I can imagine they could do it without physically lifting her out of bed.  

SATURDAY, NOVEMBER 18th

Kerrie was still very unresponsive and seemed really out of it all morning. The Bariatric Surgeon came in to evaluate her for a feeding tube and told me that the regular surgeons didn’t want to do it and wanted a Bariatric Surgeon to do it… The Bariatric Surgeon isn’t sure she wants to do it because it’s so risky.. Dr. Jana said it WILL get done soon.. so I hope she can find someone to do it that’s familair with the anatomy of someone whose had bariatric surgery!

 In the afternoon, she started trying to talk and was telling me she was having pain in the lungs and chest and “felt strange” all over. She said she just didn’t feel right, but when I asked her what was wrong she said “I don’t know.”  They finally gave her some pain meds when she said her pain level was around a 7 out of 10, but I didn’t worry until she told me to call Mom and have her come to the hospital. She said she was scared and that something was wrong.. This worried me, because this is what she said the day before we ended up taking her to ICU. She knew something was wrong, felt strange, but didn’t know what the problem was… Saturday was the same thing. They did chest x-rays, an EKG and checked all her vitals but could find no problems.. She had an MRI scheduled for sometime over the weekend and I kept wishing they would do it so we could see if that’s where the problem was.

Although she still said she felt strange, the extra pain killers made her feel a little better and Mom and I stopped worrying a little. Mom was testing her on her memory and asking if she knew her phone number and address… She knew the phone number, but wasn’t sure about the address. Once Mom told her the street number she was able to remember the street name without any prompting.

Around 1:00am she looked at me and said “I have an idea. I think I should blablabblabblab.” I couldn’t understand the last few words, so asked her to try again.. she tried several times, but I just couldn’t get it. She was trying so hard to get the words out, but I coudn’t understand the last few… To try to imagine how Kerrie sounds try this:

Press your tongue against the back of your bottom row of teeth. Then hold the right side of your mouth closed and try to talk without moving your tongue or lips at all. Anything more than a one syllable word is very hard to understand.

I asked her if her idea had something to do with being in the hospital and she said “yes.” I asked if it was something good and she said “yes”.. I asked if it had something to do with getting her right arm, hand and leg to move and she said “yes”… but she was too worn out to try to say it again and I gave up trying to figure it out.

SUNDAY, NOVEMBER 19th

Kerrie was more alert on Sunday as was flipping through the TV Channels when I woke up :)  I was sitting, drinking coffee, and she was stretching out her left arm.. when her right arm moved almost 2 inches across the bed and then the first two fingers on her right hand lifted up and stretched out, then curled back down around her wrist brace. This was major movement, not the little twitches wer have seen in her foot, and I jumped up to call Mom right away.. but, when I asked Kerrie to do it again she couldn’t. Doesn’t matter.. she moved then, whether it was voluntary or not, so we know they are capable of movement.

When Dad arrived she smiled and reached out to hug him, so it was pretty obvious she was feeling better than she had been the past few days. I told Dad about Kerrie remembering her phone number and having her “Idea” and she looked really confused about this… I asked her if she remembered it, but she said “No. I must have forgot.”  It bothers me that she doesn’t remember something that happened the night before, but I suppose that’s something we will have to watch for.

Although she was acting much better, she still complained of chest pains, hurting all over and not feeling right.. and her blood pressure was extremly high. They finally gave her some extra pain meds around 7:00pm and slept the rest of the evening.

MONDAY, NOVEMBER 20th

Mom said she was very alert this morning and was even able to read her K.A.S.T. T-shirt without being prompted for the words.. and without slurring them. That’s a pretty big improvement.

Ron was with her today, had her playing Tic-Tac-Toe, and was able to hold her hand when the doctors came to talk to her about having the Feeding Tube placed. I’m glad he was there to hold her hand, because I’m sure this all frightens her.. I know it frightens me.
The Feeding Tube will be placed sometime tomorrow, and will be done by the Bariatric Surgeon. The surgeon said she felt much better about it, after seeing Kerrie today, and seeing that she was much more responsive than on Saturday.

 
There are several risks to this surgery and I’m sure Mom can add more detail later. From what I understand, the risks are as follows:

 
–         They will need to put her under general anesthesia. This can be dangerous with any patient, but even more so with her. From what I’ve been told, the risks of this are heart failure, stroke, damage to the liver or kidneys.. I’m sure I’m missing something, so Mom feel free to chime in. Although these are the risks for anyone undergoing general anesthesia, Kerrie is a higher risk because of her condition.

 
–         They may need to intabate her. As with the MRI a few weeks ago, they may not be able to extabate her right away.. if this is the case, she will need to go to ICU until she can breath on her own. Mom said this could be a day.. it could be two weeks. Kerrie could surprise us all.. again.. and have no problems.

 
–         Because of her immuno-suppressed condition she may have problems healing from the surgery, the feeding tube sight could become infected, stuff could leak out into the stomach area, etc.

 
  The risks can be high with this, but it has to be done. I’m going to try really hard not to worry.. but I know that will be impossible. Mom.. if you can give more details about this it would be nice.. I can only remember a few of the things you told me.

 
Kerrie’s blood work shows her liver enzymes are getting too high. This could be caused by a few different things, possibly Graft vs. Host disease from the transplant, so Dr. Jana has also decided to stop her Anti-Fungal medication ( I guess this could also be the cause). This concerns me for a few reason.. the biggest being that the doctors all felt the infection in Kerrie’s brain is a fungal infection and if she’s not getting her anti-fungal medications then the infection is not being treated. We have complete trust in Dr. Jana, so we will just have to trust her decision on this.. but I have several questions about it.. especially about whether or not this could cause the infection in her brain to get worse. Hey, what do I know.. I work at an amusement park and have no clue about medicine. No matter how hard it is for me, I just need to learn to keep my mouth shut sometimes and go with things..

 
We still have no word on when they will be coming to take her for her MRI, but I am hoping it is tonight. If they have to intabate  her during the surgery tomorrow then the MRI will have to be pushed back even longer. I want to know what’s going on inside that head of hers.. especially if the anti-fungal meds are being stopped.

 
I apologize for taking so long to get an update on here.. and for giving you such a long one when I finally did post. Once I have some news tomorrow I will put it on here immediately.

 
Let’s hope this surgery goes well!

 
Jenn