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!!!!

In Jess's Words

This is Dan,

One of Jess's more severe deficits is her inability to distinguish between letters. Its 1:26am and I found her working on her first attempt at writing since the surgery. She asked if I would post it, and of course I gladly obliged. I hoped this would illustrate to everyone why Jess is unable to responded to your messages. I save reading her your comments until things are really tough, it is the extra motivation she needs to pull through. Thank you all for your continued support.

 

Jess's next step

This is Dan,

Last night Jess was moved from the ICU to a neurological step down room. This was an expected step and is a step that every patient who undergoes head trauma at UCLA goes through. It was something that had been approved since yesterday morning but we had to wait for a room to become available. This has been a mostly a good move, with some slight hesitation and concern. On the positive side, the move means that Jess is progressing accordingly in her healing and that she will be in a room that is much more calming and private. The nurses do not come by as often and her regiment of medications has lessened. For the first time since coming out of the surgery Jess was able to sleep for more then a few minutes at a time. The room is bigger then the ICU and allows for me and her parents to all have a comfortable seat and room enough not to step on each others toes. The room also has a window, which although just shows surrounding buildings, allows sight to the outside world and natural light.

On the negative side, is STRESS. Jess had to endure a fair amount of pain during the travel 200ft down the hall to the corresponding wing. Any movement is tough on Jess and this was a big one in her present world. The same freedom that allows Jess to sleep also causes her significant stress. She is haunted by the memory of the surgery at UW and the need for a second surgery. She worries that she will begin to deteriorate and no one will know. This is in spite of the fact that between me and her parents, she is never left alone, she is hooked up to every monitor available to the facility and is periodically checked on by her nurse. The memory of the pain and exhaustive rehabilitation caused by her emergency brain surgery at UW is so prevalent that every time she cannot control her right hand or cannot find a answer she fears she is slipping backwards again. She easily forgets that it has been less then 24 hours since her surgery was completed and she still has a vast amount of recovery to do. The nurses and caregivers here are wonderful and Jess has quickly found her favorites and made each of them laugh. It is rare to have a nurse leave her room without a smile on their face. Her deficits are severe, but we see small changes daily and even hourly that are encouraging to us. We also see negative changes when she gets over worked or exhausted. My personal opinion on these changes is overall positive. I feel that if we see changes, good or bad, then it means that particular aspect is not permanent. If this aspect is not permanent, it is possibly fixable. When dealing in this realm, possibilities are always positive.