Home Sweet Home, Temporarily..

This is Dan,

We finally made it out of the hospital about five hours after they thought we would, but at least we made it out. It was a stressful day for Jess. She had multiple appointments with different doctors discussing our upcoming appointments and our regiment of medications for post hospital life. She meet with physical and speech therapists about continuing therapy after discharge. She meet with pharmacists to discuss what each and every medication was and how it would be administered. Once each meeting was over, she would look at me with the expression that I had become familiar with. It was an expression of "do you understand what he just said, because I sure as hell don't". It usually was followed by a look of frustration for not being able to understand things that were simple to her eleven days ago. Any papers, handouts or business cards were quickly passed along to me. Even the basic alphabet eludes her now, and most of the words written on her prescriptions were tough for me to say.

She also meet with Fred, but more about that later.

We packed up our belongings and Jess got wheeled down stairs. We had to stop and put on sunglasses for the bright lights, ear plugs for the extra noise and had to get the transit nurse operating the wheel chair to downshift from 5th to 1st gear. We knew the trip would be stressful but did not think it would be so tough on her just to get to the lobby of the building. We got a car to transport us to our temporary home and had to give the driver specific instructions about driving with over-emphasized caution and as little quick movement as possible. The Driver was very conscientious and drove as best he could but it still took its toll on Jess. She toughed it out as she always does, but I was happy to see the drive come to an end. The difficulties of our transportation were quickly pushed to the back of our mind once we arrived at our new temporary home. Tami and David are two incredible people who have offered us their home for the duration of our stay. They only briefly meet us but were gracious enough to help us in such a extreme manor. Their home is wonderful, and I could see Jess's shoulders drop about 100lbs as soon as we walked in. We could not have picked a more perfect situation for Jess to heal in, and there are not adequate words to describe my level of appreciation to them. Thank you.

We know that we still have a tremendous amount of work to do from here on out, but leaving the hospital and being allowed to live almost as normal people, is going to have an insurmountable effect on our lives. Jess will begin the long process of rehab tomorrow and hopefully you guys will be reading her words in the near future. Until then, please remember she has extreme difficulty with the written language and cannot read text or email from anybody at this time. Hopefully everyone understands and does not take her silence as an insult.

It was not all bad getting delayed a few hours at the hospital, Jess did get to meet a new man in her life. This is Fred, he is a patient canine connection dog. He was by far the best part of the hospital stay and Jess nearly lost it!!

Jess was looking good when she left the hospital thanks to a wonderful gift from our friends Stacy and Guy. Thank you.

The Time Has Come

This is Dan,

The day has finally come, apparently... It appears that we will be getting discharged today!!! Jess's new pain management protocol was started yesterday afternoon and has been successful throughout. We still need to meet with the pain management team but it looks like today will be the day. Jess is extremely excited to get out of the hospital and regain some sense of normalcy in her life. As she so eloquently puts it "I'm BORED". I know that getting out of the hospital will be a wonderful thing but there is a slight knot of fear in my stomach to leave the cocoon of nurses, Drs', and most importantly pain killers. The protocol we are on has proven itself to keep her pain tolerable, and I think things will be much calmer and more relaxing once we get out of the hospital. If anything changes I will let you know but around 11:00ish envision Jess driving along the beach with the wind blowing her hair because that is going to be how she feels. The reality of the situation will be her strapped in tight with oversized sunglasses and her head wrapped, but who cares about that reality.

Jess got to 'wash' her hair today. This is a hospital shower cap, which has shampoo on the inside and does not need to be rinsed. Not exactly a spa day, but pretty close.

The Slow Road Through The Hospital

This is Dan,

It is incredible to think that it has only been five days since Jess had her surgery. Time loses its meaning when you are lost in the hospital cycle of nurse visits every few hours, days bleeding into one another, sunrises bleeding into sunsets, living in three hour increments between administration of drugs. Sometimes it seems like it has been months since the surgery and other times it seems like it has been seconds. There is ever present fear and elation. There are actually times when the two can occur simultaneously. Elation that Jess can stand up on her own, and fear that her wobbly legs will not sustain her trip. Elation that her right hand can now almost fully open, and fear that it will not regain its sensation or dexterity (although Jess says its nice because she can use her numb side for getting shots from the Dr's, and she is getting really good at doing stuff with her left hand). The most significant journey while in this hospital has been attempting to get a handle on Jess's pain management. Jess's pain management has been our most frustrating aspect of our stay at the hospital and remains our largest hurdle to being discharged. In order for Jess to leave the hospital she needs her pain managed by oral medication only, as that is all we can administer on our own. Right now Jess has a regiment of oral medication, and a self-administered limited dosing of medication through her IV. As to date the pain management team working with Jess have yet to make any significant strides in an attempt to limit Jess's need for her IV dosage. We are not willing to leave the hospital until it has been demonstrated to us that their particular drug protocol has a longterm effect on managing Jess's pain.

Its hard to gauge what is working and what isn't because Jess's level of activity has been steadily increasing. She has recently began eating more solid food, going on walks around her floor, walking to the bathroom with minimal assistance. With this increase in activity Jess becomes strained and worn down, often needing a nap after traveling to the bathroom, or meeting with a Dr. It appears to me that it is simply exhausting for jess to be awake. Her body is working so hard on healing itself that there is little energy for other things. Deficits will come and go or vary in degree depending on the severity of Jess exhaustion, or severity of inflammation and healing. Jess needs a nap pretty much after any activity. In similar fashion to life before her most recent surgery, Jess insists she does not need a nap right up until the point she falls asleep.

All and all, Jess is her normal resilient self. Always seeing the best in things, talking with all the nurses, and continually making her parents and I laugh. She really appreciates all the support she has been getting. It has become somewhat of a ritual for me to read her your comments on Facebook and her blog. As of right now, Jess cannot interpret written language. This gives me the pleasure of reading all of your comments to her, and quite frankly I often need to take breaks to allow the lump in my thought to subside. She really wants me to express the fact that she is not in a state where she can respond to anyone but does want to thank you all for the kind words of encouragement.

Prior to Jess being able to walk on her own, we took her around the floor in a wheel chair, because she's Jess and she can't just stay put!!!!