Another Friday 13th OR Visit

There are a lot of things in flux as I put together this entry, but this is where we are today. I expect it to change as we work through the weekend.

Judi went to surgery yesterday to have a tracheostomy done. They did it in the operating room (OR)due to all of her other issues and the fact that she had one previously (scar tissue can complicate the process). Yes, it was Friday the 13th again (prosthesis was removed 4/13). She is significantly more comfortable, but still a little confused about how to breathe in this condition. As you probably figured out, her neurological condition has not improved significantly as a result of the shunt valve replacement. Her head has refilled with fluid as planned and is stable with the brain ventricles at the appropriate size. As much as I hate to say it, she has actually lost a little ground. It is impossible to know if this is due to the loss she was already experiencing as a result of the flap removal or from the issues she had in surgery last week. Just gotta stay positive here until we get her put back together.

She continues to struggle with the "panic attack" episodes. As they try to reduce her level of sedation, the frequency of these episodes increase. I still believe they are seizures, but there is still a split among the doctors on whether they are seizures or over stimulation of a nerve center. It doesn't matter to me what they call them as long as they figure out how to stop them. I believe these are the same episodes she was dealing with before we came to the hospital. The neurologists are looking hard at what is going on here. We may take her for a 24 hour EEG to determine once and for all whether it is seizure activity. I reminded them of the medications she was previously on that helped control these to some extent and got them to start those again. While she was sedated, it really didn't matter.

Putting her head back together will be the big discussion early in the week. I have discussed her current physical condition with the Medical ICU (MICU) doctors and they believe she is healthy enough for surgery. The consensus from a purely health standpoint is that further delays would only result in her losing ground (due to the effects of her neuro condition). The plan was to move forward with the graft surgery next week if her neuro condition did not improve significantly as a result of the shunt remediation. I believe that will be the path we take. There is an outside chance we might opt to go with a prosthesis again now that we know for sure she has this "sinking flap syndrome." We need to have a good sit down discussion with the neuro and plastic surgeons to make sure we understand the impact this could have on each option and how to prevent us from ever being here again. The complication created by the syndrome is the skin tends to get sucked into the joint between the skull and prosthesis/bone and causes the skin to break down over time. We believe this was either the cause or key contributor to both previous failures. I'll keep everyone posted on where we land.

Regardless of which path we choose, we have to do something. I owe that to Judi. As you can imagine, Judi and I have had many discussions over the years about our wishes if we were to become critically ill/injured. I know she would absolutely want to take the risk of another surgery if there was a chance it would improve her quality of life from where it is today. Judi's condition is not good. I hesitate to write this because it some how makes it more real to those of us that are unwilling to give up, but I want everyone to know the battle she is fighting. Tears fill my eyes as I put this in words, so I'll do my best. Judi no longer has control of her arms or legs. As she lays in bed, she is stiff from her neck to her toes unless she is sedated. It is unclear what her mental status is, but she is unable to focus, follow any commands or interact at all. When she is not at least mildly sedated, she is consumed by the "panic attack" episodes which quickly spiral her out of control and requires sedation to break. She cannot swallow, so she gets her food, water and meds through her PEG. Her inability to swallow prevents her from managing secretions in her mouth so she will need a trach (at a minimum) to breathe and not compromise her airway. In this condition, she will only continue to lose ground over time. Just so there is no confusion, the fact that I am writing this should be in no way, shape or form, construed as giving up on Judi's chance to recover. It is simply to understand why it is so critical to get Judi's flap restored as soon as possible even if there is risk involved. There are no guarantees that this will work either, but it is her best chance for now.

There was not a lot of good news this time, but there is good in the fact that we still have the opportunity to fight! Many are not given that opportunity. It is always a reality jolt to sit in a Level 1 trauma center Emergency Room (ER) for a day followed by a couple of weeks in an ICU. I'll remind everyone of something that happened a little over 3 years ago. When Judi had her accident, within minutes I had a nurse, 2 EMTs and an Orthopaedic Surgeon helping her on the side of the road. I remain firmly convinced that God did not save her that day to leave her in the condition she is in today. We have to keep fighting for her. I miss Judi more than anyone would ever be able to understand. We have been together practically our entire adult lives and she is my best friend as well as my wife. She is also Jessica's mother and I think all of you know how much I love my daughter. That's worth fighting for! I have to admit I have lost a couple of fights in my lifetime, but I have always gone down swinging!!

Steve