Every breath I take...

Dear Lois,
Sleeping at home, or trying to sleep at home, was the best decision. I would have made it miserable for Mazha if I were there with her. Because of my throat, I didn’t get any sleep last night. That’s not being dramatic (what’s to follow is).

Because of the ‘snowstorm’, the TV kept going out every 90 seconds. I decided by 9:30 that I would just call it a night and try to catch up on my sleep. I quickly realized that it was going to be an extremely long night, and catching up on any rest wasn’t going to be done. My throat closed up… well, there was a small gap for air to come through, but that was about it. I couldn’t swallow. [If needed, you can skip this part… it’s kind of gross] It seemed like every time I was about to drift into sweet bliss, the salvia would build up and I would have to swallow. It would cause so much pain it would take another 10-15 minutes to get me to that resting place again. And then the same thing would occur. I started to have night sweats, so I would kick you off me… but would get the chills so I’d reach for you on the floor and cover up again. I got up and went to the kitchen to grab a cup. I thought if I could spit instead of try to swallow, I wouldn’t be in the same amount of pain. No luck. I was getting tired to reaching to the nightstand so I placed the cup in between two pillows on the bed. Every time I would reach for the cup, I would hit the headboard (which would hit the wall), and it would wake Kensington up. I would go to comfort her, which would only be about 30 seconds, and then start that process all over.

Around 2 am I decided that if I got a towel and placed it on the pillow and positioned my head just right, I could drool the salvia out. That only made my lips tickle. I tried this for about an hour or so, and then I contemplated on whether or not I should take a sleeping pill. The fear rushed in me. “I’m going to fall asleep and die by choking on my own slobber.” I decided not to take a pill. I folded you up and placed you on the nightstand and tried to sleep where my head was on you, my body was laying diagonal across the bed, and my mouth was positioned over the floor. This lasted all of two minutes before I gave up. Stupid idea. I then tried sitting up in the bed. I placed three pillows against the headboard and thought if I was positioned just right, my drool would go directly down my throat and there wouldn’t be a need for any muscle involvement. Because of being over exhausted, my mind started playing games. What if this wasn’t a viral infection? What if this was a symptom of ALS? I mean, Mazha is going through the same pain right now that I am. There are three types of the disease, one of them being called ‘familial’ (inherited). Simone and I have discussed getting tested, but we have to find out if Mazha’s genes have a SOD1 defect. If it does, then we should get tested to see of we have the same defect. If it is defected, it could lead to a 5-10% chance of being dx with ALS. Familial ALS is a small percentage of the ALS cases.

I decided to get up and go into the living room next to the hospital bed to see if I could find the suction that MDA gave us so I could use it. Then I realized I had no clue how to use the suction or what I would need to plug it into. I know the one in the hospital is connected to her vent… there is a portable vent here as well, but that would wake up Kensi if I turned it on – in the living room or the bedroom. So I decided it was back to drawing board… well, more like back to spitting in a cup. I did this until 6:30 when Fazha called and said there wasn’t a need to come to the hospital as early as I had planned. “What… why? Did something happen?” He told me to look out the window. Snow. A lot of it. Well, a lot of it for the state of Texas. “Good. I’ll try to be up there by 9:30 – 10”. Kensington got up so I feed her and wheeled her playpen into the living room. I went to turn on ‘Yo Gabba Gabba’ and the TV was still out. All of her toys were either at Hospice or at Simones. Looks like we were both SOL. No Tv. No Toys. No papa willing to hold her constantly. She decided to cry. As did I. [this is where I failed at parenthood] I went back into the bedroom and with one pillow under my head, placed two pillows over my head to drown out her whaling and went to sleep. Yes. I actually was able to go to sleep for a whole 2 hours. When I woke up, Kensington was asleep, so I got dressed and went outside to clean off the car.

When I arrived at Hospice, Fazha was waiting outside to help me with Kensi, the diaper bag, duffle bag, and you. Fazha said that she just work up and had a burst of energy. Her color came back, her eyes were wide open and she was talking up a storm – in a way that he could actually understand her instead of trying to read her lips and try to make out what she was trying to say. I thought this was great news… but when I got into the room, her eyes were rolled in the back of her head, her color was gone, and she was out for the majority of the day. When she did wake up, it took all three of us (Fazha, Paulette and myself) to try to make out what she was saying.

Fazha refused to go home, so I wrapped Mazha’s legs with you before I left and headed back to the house. Chris has been missing his little girl so much that I finally installed Skype so they could talk before it was time for Kensi to go to bed. I'm sure over the next couple of days, we'll be doing this a lot :)