How Did We Get Here??

I can hardly believe the situation our little family finds itself in today. I keep hoping it is just a bad dream and that any minute I will wake up. Unfortunately, it is all too real.

Judi's caretaker called me Thursday around lunchtime and indicated Judi was having severe problems breathing and was starting to lose her color. An ambulance was dispatched and she was taken to MCG at my request. The paramedics got her on oxygen and she was in what they called moderate respiratory distress when she got to the ER. I wanted her at MCG because I knew this was going get complicated in the long run due to the changes in her neurological condition following her surgery in April to remove the prosthesis. All of the doctors that have attended to her since then were at MCG. As I walked through her recent history, I could tell the ER doctor was struggling with what to focus on first to determine what might be going on. He ordered a broad spectrum of tests that would hopefully narrow down the possibilities.

I'll step back in time for a few minutes so that some of her recent history is more clear. Judi's uncontrolled movements obviously concerned me, so I have her working with a "movement disorder" specialist. They are neurologists that specialize in this area. He did not identify anything conclusive. I asked him if it could be caused by some electrolyte imbalances that may have developed after the surgery and all the antibiotics she was talking. He indicated that it could (which I already knew from some research) and ordered some blood work to check it out. That blood work came back with her sodium level slightly high and we started adding more water into her routine to bring it back down. During this same period of time, Judi saw her neurologist and he was not sure what her movements were, but did not think they were seizures. The steep change in Judi's neurological condition over the weekend concerned me a great deal, so on Monday (6/25) I contacted her neurosurgeon, and he scheduled her for an urgent CT scan for Thursday (6/28) to see if anything had changed. I was also worried that Judi might have a UTI just because of the way she was acting so I scheduled her an appointment with her urologist to get that checked out as well. Monday night (6/25), I became concerned with Judi's breathing. She seemed to be struggling some and was wheezing. It got bad enough that I packed her up and took her to the Doctor's Hospital ER (it is right down the road from the condo) to get her checked out. They did a chest x-ray to make sure her lungs were clear and after I walked through her recent history, they did a CT scan of her head to insure nothing had changed there. The x-ray was clear (this is an important piece of data) and the CT showed no issues.

Now back to Thursday (6/25). The blood work showed her sodium levels had increased (a big surprise with the increase in fluids she had). We started giving her some additional water to bring those levels down. The urine test indicated she had a UTI with a unique bacteria that is typically found only in hospitals (it subsequently grew out at a very low level and probably did not need to be treated). This "bug" is one of the few that the antibiotics she had been taking following surgery (last 9 weeks) would not eliminate. We started an antibiotic for that. They did a chest x-ray and that was clear. They did another CT scan and it showed no issues. They did an x-ray of her shunt and associated drain and determined it was clear (if it was plugged it could affect her mental status). They admitted her to the hospital since the antibiotics she needed could only be given by IV and they wanted to monitor her sodium levels since they were not coming down as expected. Thursday night went relatively uneventful with the primary focus being extra water to address the sodium and antibiotics for the UTI. Judi's "shaking and thrashing" continued, but I think the doctors had convinced themselves that this was likely a result of the sodium and infection combination.

On Friday (6/29), I felt like the shakes were getting worse and asked to have the neuro guys get involved to make sure everything was OK in that arena. The attending physician finally agreed (I wanted to make sure we didn't get into a weekend and I then need help) and one of the hospital neurologists checked on her. He was very concerned about her condition and went off to check her history and talk with her regular doctors. Her neurosurgeon came in as well to check her out (she was scheduled to see him on Monday 7/2). Things start to change fast now. He was concerned about the position of her brain in the latest CT and combined with the change in her neurological state, felt it was necessary to replace her flap soon. Her neurosurgeon is very conservative and his normal stand is a minimum of 6 months wait (prefers a year) before putting something back in after an infection issue to insure all of the infection is absolutely gone before another surgery. The fact that he wanted to do it soon was an indicator to me of how serious he feels it is. He told me I had a difficult decision decision to make (what's new there?). If we wait too long, the brain issue could be unrecoverable without other damage. If we don't wait long enough, the new insert could get infected and we would have to go through this all over again. It was good that Jessica was also there visiting and got to hear all of the discussion as well. He also made a pitch to let him and the plastic surgeon I had issues with do the surgery. He also proposed a much less invasive graft for the repair that I was very interested in (I'll cover that in more detail another day if we opt to go that way). He also understood if I opted to have it done somewhere else. About two hours later, he showed up again and wanted to discuss her condition further. He proposed doing a graft from her ribs that essentially runs flat across the side of her head (as opposed to trying to make it look like what was there before the injury). This makes the surgery much simpler and gets her "buttoned back up" with living tissue from her own body. If anything is likely to survive long term, this would be it. Obviously it wouldn't be "pretty," but right now I am fighting for her survival and could care less and she will always be gorgeous to me! If it works well for her from a cognitive standpoint, we can always go back and put something under the skin that makes her physical appearance whatever she wants it to be. He wanted to do the surgery on Tuesday (7/3) if she was healthy enough and if I would allow him and her previous plastic surgeon do the surgery. I won't go into the details, but we had a long man-to-man talk and I agreed to support that strategy. Things were falling into place until all hell broke loose.

About 8:30 PM on Friday (6/29), I went home to grab a shower and change clothes since her nurse was the same as Thursday and she was comfortable with Judi's needs. When there is a new nurse, I usually leave around 10:30 to get a shower after getting them educated and making sure I am comfortable with them caring for her. When I got back around 9:30 PM, the nurses and doctors were ruffled and were visibly relieved to see me back. She had gone into something like a seizure while I was gone and had an episode of severe respiratory distress. They were struggling to hold on to her (kicking, swinging her arms and desperately trying to get a breath). They finally got her to calm down a little (I think she was just exhausted) and she was able to catch her breath. She was at this point when I came in. I worked with her and got her calm, but you could hear there was some liquid in her throat. We couldn't get it suctioned out because she would bite down hard on anything that went in her mouth. I started warning them that this was a bad situation because I knew she could not swallow well even under the best conditions in her current neurological state. At 10:00 PM, she started struggling again and I alerted everyone. I won't try and describe what I saw, it still brings tears to my eyes, but she was gasping for air and had a terrified look in her eyes. I could almost hear her begging me to help her. The rapid response team was activated and the code team was standing by as I continued to try and get her calmed down while giving her full oxygen flow by mask. She freaked completely if anyone else tried to get around her face but me. Her O2 levels were in the marginal OK range and we kept hoping she would come out of it. The decision was made to take her to the medical ICU since they had they had the capability to supply a higher flow oxygen. After we got there, she finally calmed down a little, but was breathing so shallow that she was just not getting enough oxygen. It had reached the point where we needed to either put her on the ventilator or risk potential brain damage (or worse) if her oxygen got too low and then tried to do it. I already knew in my heart that this decision was coming and there was no doubt in my mind that the answer was to do it now. I was asked by the attending doctor as well as the anesthesia doctor if I was sure this is what I wanted to do. They wanted to make sure I understood that Judi may never come off the ventilator. I know they were only doing their job, but I am so tired of the "system" trying to write her off. I know the heart and spirit in Judi and it just isn't her time to leave us. Perhaps that day will come, but I will know it if it does. For now, as I have said before, I ain't hearing no fat lady singing (or even warming up)!

Moving on. We got her on the ventilator and she obviously started doing better. She was still having difficulty maintaining her O2 levels in her blood stream at the appropriate level. This indicates that there is something wrong with her lungs. A chest x-ray taken then showed a significant portion of her lungs were "injured." That's a loose term here meaning that there is infection, fluid, etc. showing on the x-ray that is likely impacting her ability to get O2 in her blood stream. I was speechless when the pulmonology doctor showed me the X-rays. I asked how this was possible with all the previous x-rays being clear. How did we go from clear to being on a ventilator in a day? He was as perplexed as I was. There are a lot of theories (including some that are neurological in nature) and we will likely never know. If she had been eating/drinking through her mouth, the most likely cause would be having it go down the wrong pipe and get in her lungs. That is very common for people with swallowing difficulties in Judi's condition. It is also possible that she got a lot of secretions going down the back of her throat and aspirated it since she couldn't swallow.

So where are we now. Judi is in the medical ICU at MCG. She is on a ventilator and likely will be for a couple of weeks if things go well. She is getting a wide range of antibiotics to preclude/eliminate any infections in her lungs. Her lungs seem to be clearing a little, but the ventilator settings indicate she has a long way to go before her lungs work at the efficiency needed to get her off the ventilator. Her prognosis is good and there is nothing to indicate that she won't recover and get off the ventilator. It is now just waiting it out and letting her heal. If it shifts out beyond a couple weeks, I'll be faced with making a decision on whether to do a tracheotomy so they can get the tubes out of her throat. The trach is easier on her (no tubes running down her throat)while using the ventilator, but it is a long process to get off of it and Judi's history would indicate a long process if we have to go that route. We will obviously do what is right for her.

I expect to have a very busy and tough day tomorrow. The big issue now will be addressing her brain position issue and her current condition. Recall that her neurosurgeon was at the point on Friday that we do the surgery on Tuesday. She is obviously not in a condition for surgery now, but we'll have to develop a plan. I suspect we are going to come to the conclusion that the two issues are actually linked and if we are going to get her healthy, we will have to address both issues.

So how did we get from being admitted to the hospital for treatment of a UTI to the ICU on a ventilator? It still baffles me.

Here's what I do know. "Team Judi" WILL NOT give up no matter what! I consider all of you out there as members of this team. All of you have supported her in some way or the other. I could list hundreds of ways that we have received support and we have been truly humbled by the kindness shown by so many. I saw a lot of improvements in Judi before we had to get her prosthesis out. We are going to get her healthy and get her head closed up as soon as it is medically safe to do so. We will get her back into rehab(if necessary)and correct any issues that have developed from this hospital stay. Yes, we will likely have to start all over again in many areas. Jess and I have a lot of work to do, but we have done it before and we will do it again. Please don't give up or forget about her. I know that God has something special left for Judi to do in life and I am going to do everything I possibly can to see that she has the opportunity. Tomorrow is our wedding anniversary. 32 years ago, I promised God and the woman I love more than life itself that I would be here for her no matter what. That's what I intend to do. I hate that Jessica is having to go through this all over again. I made a commitment to her a long time ago as well when I decided to become a Dad. I will meet that one too! Make sure you enjoy time with those you love and remember to ask yourself what is truly important.

Keep us in your thoughts and prayers,

Steve