Post 2 of 2. "I'll give you a reason to cry!"

As many Cajun mother's do, my mom would always say that line when I was being dramatic as a kid. It was her way of forcing perspective and I have to laugh a little because what happened in Houston definitely did just that. 

After the initial disappointment to be away from home wore off, mom started to thrive at TIRR-- so well in fact that her therapists had decided that she would be able to walk again and were planning to use equipment on her that they often don't have a chance to. 

Chuck, William, and I made plans to go see her but Mom and Dad kept pushing our trip back because they wanted her to be able to show off her progress and knew that she was only a few days away from an impressive visit. I spoke with her on the phone several times over the course of that week and a half and she was mentally sharper than she had been in quite some time. It was like talking to someone I hadn't heard in longer than I realized and it was more clear to me than ever how far she had drifted from that in recent months. 

One day Dad called me to say that she had been in terrible pain during therapy and that they had to carry her to her room. I talked to her shortly after and she could tell that I had been crying and asked me not to, saying, "Please don't cry. It makes me sad when you cry", talking to me like a child because in that moment I was. I was crying, I was questioning, I was tired of seeing her in pain, and I was losing my grip. She told me it would be ok, to put my Divine Mercy Chaplet on and get some rest. Less than 48 hours later, she was being intubated and I was crying a whole lot harder. 

Later that night after I hung up with her, she started to get extremely sick. She was fading and vomiting but because it was nighttime, it was hard to tell this apart from being sick and sleepy. Dad stayed up with her all night asking for the nurses to help him. The next morning they admitted her to the hospital and we left to meet them. 

Upon arrival I was blown away by her condition. She was entirely unresponsive; if you opened her eyes they were in a fixed, upward position and she was breathing like something was caught in her throat. At the time they were telling us that her sickness was a result of a severe UTI but I knew that her rapid decline was too extreme for a UTI to be the sole culprit. Plus, mom basically lives with a UTI so this made even less sense, but the Dr said that she was on the antibiotics that best fight her infection so we just had to give them time to work. He also pointed out that her immune system was compromised and that a "normal" UTI may be much more intense now. Her vitals stayed strong though, so Chuck took Dad to get her things from TIRR and grab some food. He had really let himself go so Chuck wanted him to shower at our hotel and get a good meal as well. Needless to say, he was reluctant to leave her, even briefly. 

While they were gone mom started to sound like she was aspirating so I asked her to swallow hard. I knew it was a long shot because she was practically unconscious, but I also knew that she was very close to distress. She didn't respond so I called the nurse who quickly decided that we needed the Rapid Response team and my poor dad got back to the room just in time to see total chaos unfold with loud voices and louder machines. 

The Dr that I had previously spoken with came back in and at this point admitted that he no longer thought that this was just a UTI but more importantly, that such a quick and dramatic decline meant that the (at this point unspecified) infection was severe. Through a thick African accent he said things like "well with the cancer and the brain surgery..." and "considering her weakened immune system..." My Dad, finally said, "What are you saying? What is the prognosis?" The Dr shrugged his shoulders, slowly shook his head and said "not good." Dad said "So she might not make it out of this?" And he said "No." 

I can still in my head hear the deep honking sound of the portable breathing machine and see Chuck pressing William's sleeping face to hers as they packed her up for the move to Shock Trauma ICU. 

And so began the first of many Dr's telling us that she wouldn't make it, the first of many tearful phone calls to my family back home, the first of many moves from one ICU to the next, and the most trying time of my life thus far. 

Two days after the move into ICU, we found out that while she did have a UTI, she also had an infection on her brain that was, as the doctor put it, "the absolute worst case scenario". 

We had no way of knowing exactly where the infection came from but we did know that emergency surgery was the only way to save her life, so even though they told us over and over that while she would likely survive the surgery itself, the following days were bleak, the only chance we had was to (as Chuck put it) "roll the dice". 

So we did. She came out of surgery fine and we watched her as days became weeks of slow progress-- even to the point where "progress" became synonymous with "stability". 

Of all the many Dr's who worked with us, only two were ever hopeful and that made things even harder. We were constantly torn between continuing to fight while staying hopeful or listening to their advice while resolving ourselves to the loss. This was only made harder by the fact that she couldn't communicate or decide for herself. 

But her nurses stayed hopeful and told us every chance they could that this woman was clearly a fighter and that clinging on with such terrible odds meant that she was making the decision for herself. They couldn't get over her and it always felt like there was a personal investment to her care and progress. 

So slowly but surely she beat one odd after another. She was not expected to make it, much less this far. 

She went from total life support to no breathing machine, no IV's, and minimal medication.

The journey to get her back home was long and painful-- a story for another blog post-- but we did it.

We made a promise to her that as long as she wanted to fight, we would too. We would match her lick for lick. So we did then and we still do. All of us. 

Months later I can still say that fluctuation is the only constant and finding a common thread between medication and behavior/ability is extremely difficult. We cannot tell you why some days she talks and other days she is completely silent or why she remembers exactly what the previous day was like sometimes, while other times she can't remember if her physical therapist was there an hour earlier. 

While she is still primarily on a feeding tube, she has regained the ability to swallow and can take her medication by mouth. 

She still cannot use the left side of her body but she feels it and can sometimes (perhaps involuntarily) move her left foot. It appears as though the infection left an even greater deficit but we are still fighting to see what is permanent vs what can be resolved through medication and procedures. She has therapy several times a week and when she is feeling up to it, we take her outside on the patio. We had to get a hospital bed for her, but she spends the majority of her days in the living room recliner. 

My dad cares for her constantly which means that he is never relaxed, never truly rested and always (at least to some extent) distressed, so we have made the decision to keep visitors to a minimum for now. We still need time to adjust to this new lifestyle, figure out what (if anything) we can improve and allow for any downtime to be devoted to dad getting some rest, no matter what time of day that may be.

I hope that one day we are able to welcome visitors and that if you see her again, you see the person you once knew. But if you don't, I hope that you keep this incredible story in mind and at least take solace in the fact that this strong woman proved so many wrong, put up the fight of her life, beat incredible odds, and in doing so stayed true to person we all know she is. 

Grace has never been anything short of amazing... and she still is.