Last night was a rare occurrence, I was the last one awake. Which is particularly surprising since two nights ago I fell asleep lying on the ground in the living room at 8:00 p.m. So last night I was the last one up and was left with my thoughts, which kept centering around Marian dying.
I was watching The Suffragette with Carey Mulligan about the movement for voting rights for women in England at the turn of the century - man that looked rough. I was hearing Marian cough a bit in her crib as I watched. The good news is that she does have a cold that is causing the coughing, the bad news is that we all have colds now. When Marian gets sick it's not the same as most little kids. When she coughs from a cold it is a deep cough that shakes her body, she scrunches her face and gets flushed from the effort. She's not strong enough yet. When she goes into a coughing fit she'll hold her arms out to me to pick her up and comfort her while she's struggling to get through it.
Earlier in the day yesterday Marian had a coughing fit at the table. The girls were playing with play-doh and I turned my back for one second, and I'm pretty sure she took a small bite of play-doh. I mean, she was holding it and there were tiny teeth marks at the very end of the play-doh so it's logical that's what happened.
She was fine right afterwards but a few minutes later she started coughing over and over again. She reached out to me trying to say mama between her coughs. I held her close and upright and walked her to the sink in case the coughing made her throw up which it sometimes does. Her face got so red and she was gasping between coughs, trying to cry but she couldn't get the air to before another series of coughs started. I didn't know what to do. I thought of flipping her upside down and pounding on her back. I thought of running next door to my neighbor with three boys who I carry in my back pocket of someone I think always knows what to do with kids. I thought of calling 911 if she stopped being able to catch her breath, then I realized I was holding my breath and wasn't breathing myself. Everything was flashing through my mind while Emily happily sat at the table playing play-doh. Marian finally drew in a large breath when the coughing fit ended and started crying and pressed her face against my shoulder. Twenty seconds of agony.
I then took her into the living room and put her albuterol inhaler mask over her face, which she hated and was trying to bat away while shaking her head no back and forth. I gave her a puff of the inhaler. I keep the inhaler easily accessible in case of a coughing fit. I haven't had to use it in months, but it works very well to calm her system when she gets a bad cold. All this commotion caught Emily's attention, and then she picked up the mask and wore it over her face marching around pretending to take puffs saying she had a cough. It was about 10 a.m.
So anyway, this was really rattling and is not a rare occurrence. It happens when she gets sick. It has improved a lot over the last few months though. In September we had to bring Marian to the Emergency Room because she couldn't stop coughing for THIRTEEN HOURS after she had croup. It was an actual non-stop cough, multiple coughs every couple minutes or even few seconds. We called the doctor at noon that day after about three or four hours, she told us to go to urgent care or the ER. We chose urgent care, were Marian got a nebulizer treatment, which the nurse handed me the mask for and then left the room for twenty minutes leaving me to try and administer it to a screaming sick baby by myself. That treatment stopped the coughing for about an hour - just enough to get home. Then at night time the coughs went from every few minutes into every few seconds. We called the doctor back and brought her to the ER. That night when we walked in was also right after we learned Marian likely had a storage disorder. I didn't know if we would be walking out with her that night or ever. We didn't know Marian had NPC at the time, but I had just read a blog by a mom whose twin daughters died from NPC at a year old, they were mildly developmentally delayed, lower end body weight, then one of them got pneumonia and they both completely crashed and were never healthy again. I had this horrible thought that this might be the beginning of the end.
Very luckily, it wasn't. And today, even though I think sometimes of the possibility that Marian may die, I do not in any way believe this is the beginning of the end or even the end of the beginning. Last year when Marian turned one we did not know what her life would be like in a year or even six months. I worried she may not even live to see her second birthday at the time. Today, her second birthday is only a few months away and she is so much healthier, happier and stronger than she was during that horrible time in September. She is a little fighter!