Sunday, January 31, 2010

January 31,2010

Sorry that I haven't written much lately but the last week has been incredibly frustrating!!! Kristi has been moved back to ICU as they try and figure out what keeps making her sick. The supposition is that there is a bacteria attacking her liver which is causing a secondary infection in her lungs. The family of bacteria is Non-tuberculosis Macro bacterium. This variety is very slow growing and are found virtually everywhere in our environment. They can also remain latent in body for long periods of time. Many types are resistant to antibiotics so we are waiting for more information before we start treatment. We should have DNA tests back on Thursday or Friday. Most likely we will never know how or where she picked this up. o

Through all of this, Kristi remains committed to getting stronger and even though she can't go to her therapies she continues working at getting stronger. She has not lost sight of her goals - walking, riding, skiing and returning to school and graduating.

Time will tell about all of this - hopefully this piece of information will help us understand what made her so sick and get her healthy.

Love to all - Prayers for good health and patience.

Tuesday, January 26, 2010


Yesterday's procedure went great. They were able to easily access the areas of concern,extract the fluids and biopsy tissues.The culprit appears to be an area on her liver that received trauma (most likely from her seat belt during a car accident that happened at the end of October) that did not heal correctly and became infected. The body produces fluid to protect the area and then walls off the fluid so that it can't go to other areas (much like an overgrown cyst) Typically, they extract the fluid and the area collapses on itself, patient gets antibiotics to control the infection and we are done. We should get the labs back this afternoon or tomorrow morning. They believe that this infected area has been the cause of the ongoing pneumonia.

Kristi is so over "procedures", they cause her severe anxiety and fear and I certainly don't blame her; it is definitely her turn to catch a break as she has gone through more than most of us will in a life time. This acute anxiety is very common with patients who spend long periods of time in hospitals,especially ICU, and is described much like post-traumatic stress.

Kristi is going to be OK and I feel that this recent discover has shed light on the "WHYS" of all of this and her medical team can treat it and we can move on. It has definitely been a long haul and the therapists tell us to plan 3 days of recovery for every day she spends in the hospital. She gets visible stronger everyday.


Monday, January 25, 2010

Monday January 25

Hi all ,
Kristi is feeling great - the antibiotics have kicked in and they gave her a few units of blood. She is getting stronger everyday and on most days, her spirits are really good. She is determined to walk soon and looks forward to riding and skiing again, whenever that may be. They tell her it will most likely take two years for a full recovery. I am amazed at her resiliancy and calm, positive spirit.

They did not find what they thought on Friday, so today they are moving forward with a deeper level of exploration. They will do a simple surgical proceedure later today that will allow the doctors to have a good look around, biopsey tissues and drain some fluids. Hopefully it will shed some light on all of this but most likely we won't know anything today. Recovery from this should be very quick - only a few days.

Thanks for all- Jayme

Friday, January 22, 2010

Friday - January 22

Hi All -

Sorry I haven't written but things have been a little tenuous the last few days. Kristi has gotten more infections - lungs, bladder, etc. As we speak she is having an exploratory procedure to try and figure out why she keeps getting sick. The supposition is that she has internal bleeding from her abdominal area - possibly caused from the auto accident that she was in. Hopefully it will be as easy as cauterizing the vein and we can get on with the task at hand. (i.e. building our strength so that she can walk and come home.)

The goods news is the antibiotics have kicked in and her fever is normal. They are really strong so they are making her sick to her stomach but that will pass. Kristi is concerned that she will lose weight and they will put the feeding tube back in. Also - depending on what happens, they are preparing us for the possibility that they may have to move her back to ICU for a few days.

This too will pass and all will be well again!!! Thanks for the prayers - we still need them.

I will update as soon as I know more.
Love - Jayme

Monday, January 18, 2010

January 18th

Its raining really hard today so I am not going to make it to the hospital. But...I received a wonderful call from Kristi and she wanted me to add a few items to her brag list.

1. She walked today! She took 6 steps- with help, but steps never the less.
2. She was able to stand for a few minutes -no hands, no brace, no support of any kind.

When she called she was happily resting and getting ready for round two of PT while eating ice cream out of the carton. She has lost a frightening amount of weight and they have her on a diet of 7,000+ calories a day. (Wouldn't that be fun to bad most of it is through a tube)
We are all beside ourselves with excitement. Thanks for all of those prayers, no doubt they have worked as this has been a long time in coming.

Love - Jayme

Sunday, January 17, 2010

Sunday - January 17th

I'm sitting with Krisit and we were talking about all of her accomplishments in the last week. She has had a few "not so good" days as she just hasn't been feeling very well but she is much better today! Here is what she said:

1. Wheeling down to the gift shop - it is a very long way as this is a very large hospital
2. Making a fist with her right hand (almost)
3. Lots of talking
4. Eating - a little more everyday
5. The feeling is coming back in her right foot
6. Did the muscle flex and there was a bulge in her biceps
7. Able to sit on her own with perfect posture
8 Standing with assistance for almost 15 minutes.

Thats a lot to brag about!!!!
Love to all of you - I'm off to get the ice cream as Kristi
Jayme and Kristi

Thursday, January 14, 2010

Thursday Jan 14th

Everyday is full of surprises and yesterday was bitter sweet. They have set a home date of Feb 17th. YAHOO

I met with Kristi's doctors and team of therapists and needless to say did not hear what I expected. The majority of the conversation was how to fit our home to make it wheelchair accesable- we all thought that Kristi would be walking when she came home but they were not very hopefull. I suspect that Kristi already knew this but is determined to prove them wrong and I would bet money that she will! The other constant comment was that she works harder than most patients and that her attitude is very positive. She is anxious to get into the pool as she thinks that will enable her to walk sooner. We have to get the trechea tube out and healed before she can go into the water and we are hopefull that will happen next week. They also told me that she may never get all of her strength back.( We don't beleive them -good thing she started off so strong and has the determinatin of a mountain goat!)

We've started a pool as to when Kristi takes her first steps - I am betting $10 on Feb 1 and another $10 on Feb 10 for walking multiple steps with the walker!!!!
Love you all!

Monday, January 11, 2010

Monday - January 11

Similar to an infant we count the days - (8 weeks and 3 days)

Just left Krisiti - Mark and I took the dogs for a visit and that was fun. She is working really hard to get stronger but..... I can't even tell you have little she is no exaggeration, I think that her calf is the size of my forearm and her thighs aren't much bigger. They have been working to pull off the extra fluids that she was retaining and it seems to be working. At one point we think that she had about 60 pounds - now they think only 10-20. She has been on a combination of lasics and steroids to accomplish this. Also they have upped her feeding by 50%. Tomorrow she is having an x-ray that will follow her swallowing and hopefully she will be cleared to eat. Over the last few days she has gotten small amounts of pudding, jello and tomato soup but is still waiting for her Jamba Juice. She has been working on standing as well as her balance and is now able to move her wheel chair short distances by herself. Her legs are very weak but her arms are getting stronger. A few days ago she couldn't steer her chair straight because one arm was so much weaker than the other but she is getting much better!!! She will walk again.

She also asked me to bring her some books (easy ones please) and is beginning to realize that her short term memory isn't what it used to be. Its kind of funny what she doesn't remember. On the lighter side - she was practicing moving her wheel chair, going around a large table in the common room, and remarked that she was really tired after only two laps - she had done 6. She still thinks Bush is our president and when I asked her who our governor is she didn't know. I gave her a hint - he used to be an actor - she guessed Ronald Reagan. They tell us her brain is just waking up and most everything will come back or that she can relearn it. Her speech is good and she is able to write and spell with proper grammar but is struggling to read. She is much than many of those around her but she is in the brain trauma unit.

High spot - today we met this really cool guy who was going to the special Olympics - handicapped ski racer - Super G. (Paraplegic)

Lots of love! Jayme

Wednesday, January 6, 2010

Wednesday - Week 8

YAHOO - It happened! We moved Kristi late yesterday afternoon to a hospital that specializes in Neuro rehabilitation. The goals - talking, walking and eating are at the top of the list. Today and tomorrow we are working with her team of specialists who are evaluating her condition and then on Friday we will all meet together to discuss reasonable goals and time frames. This morning she worked and/or met with a pulmonary doc, neuro doc and liver doc as well as her team of therapists, which include speech, occupational and physical. It was interesting to both of us to see where she was and her comment was that she could do more than she thought. No doubt she will be talking (already is only in a very quite voice) and eating very soon. The speech therapist did a swallow test using both water and chocolate pudding. She enjoyed them both very much and they will slowly start adding some foods to her diet. The occ therapist asked her to dress herself and she did great with her shirt but not so well with the socks - admitedly socks are tough when you only have one hand and it is not your dominate one. The PTs worked to do strength and nerve evaluations and this is clearly where she needs the most work. She aced the memory and cognative thinking tests which is more than just wonderful!

The typical comments where that she is in great shape given what she has gone through but boy is she weak!!! The question is - how much of the weakness is muscular and how much is due to neurological damage. Time will tell, but muscular is much easier to rehab. There are tests that they can do but supposedly they are very painfully so todays plan is to wait for a few weeks and see how she does.(the plan could well change tomorrow) She is also having extreme pain in her feet and legs, this is most likely due to the "awakening" of her nerves and while this is very painful it is also a good sign.

I have been out of touch but it has been really crazy the last few days. I am sure that Kristi has been evaluated by no less than a dozen doctors in the last two days - both on the discharge and the admit side.

If you want to call her she has a direct line into her room at 408- 793- 4467 and she is at the Santa Clara Valley Community Hospital - Special Rehabilitation. She still can't text but I know that she talked to Steven last night on the phone and that he was able to hear her. I wil send her address tomorrow.

Love to all!!!

Friday, January 1, 2010

Jan 1st, 2010

Happy New Year to All!!!!

We had to take a step back on the weaning Kristi from the vent and gave her a break for a few days. Today we tried again with the new plan to start a little slower. Today she breathed on her own for 2 1/2 hours and we will try for a longer time tomorrow. She did great, lots of exercise and sat up for 3+ hours. She is also working hard to stand on her own and we see marked improvement in her strength. Her attitude is great and she is determined to get off of the ventilator ASAP - she is craving conversation and Jambe Juice.

The best news is that we are scheduled to transfer her on Tuesday, to a hospital closer to home. She will be moving to Santa Clara Valley Medical Center and the facility has a reputation as one of the top accute medical rehabilitation hospitals in the county. She will get 4+ plus hours of physical therapy a day and they have a hand specialist that is supposed to be really great. Kristi is looking forward to the challenge and the change of scenery. My gut tells me that she will be on her feet before we know it. We still have some medical challenges but the list is getting shorter!!!!!

Love to all of you and I hope that you had a joyous holiday season enjoying family and friends!!!
xoxox J