Charlie’s been in the hospital a week now…and, I’m predicting she’ll be here at least a couple more weeks. This cold hit Charlie a lot harder than her last one… she was only about 85% of her old self when she contracted this cold/flu, and I imagine that's got a lot to do with how she’s handling it. Day 2 here really rattled me; it was a VERY emotional day. Charlie just looked so sick and beat down, we’ve never seen her look so exhausted and weak. You know how you hear people say that when a loved one died from an illness, like cancer, while they were present in the room, that right before the person passed away they saw a look in their eyes that said, “I’m ready to go now, I don’t want to do this anymore, please let me go.” Well, I was positive that’s what I was seeing that day. At one point Charlie’s pediatrician, another doctor, and two nurses from Canuck Place came to visit while Matt was out and I could not stop crying and I told them how I saw ‘the look’ and how I’d never seen it before, and I was confused…is this what ‘regular’ children with a cold/flu look like, or was Charlie trying to say goodbye to me? When I later asked Matt if he saw what I saw, he reluctantly admitted that he had too. That day sucked the life out of us, and erased ALL of the positive thinking we’d been practicing up until then. Last time we were in the hospital we were given the good news that it looked like Charlie might be around longer then they initially thought she’d be…we’ve since learned, the hard way, that we cannot predict anything when it comes to our little baby. All we have is today, tomorrow is no guarantee.
Day 3 grabbed us, shook us hard and said, “look at this tough little angel, she’s OBVIOUSLY going to be fine, relax already!!” And with that, Charlie was smiling and singing and playing all day long. She seemed like her old self and made me think that I’d imagined the day before…until day 4/5. Charlie had two days of horrible sleeps, yellow secretions, low oxygen levels, and a high heart rate, all of which were showing us that she was struggling to breath. Our pediatrician and our respirologist came to see me in Charlie’s room and told me that Charlie had had a really rough night and morning, And, for about the third time since we’d been here this time around, we discussed our wishes regarding how far we were willing to go in an emergency situation. The respirologist, who is a very kind and compassionate woman, explained that she’s seen seemingly happy SMA babies go from good to bad, QUICKLY, one minute Charlie could be laughing, and the next choking on a mucus plug. Then we discussed the measures Matt and I were willing to take, and then REALLY discussed what they entailed, I am now rethinking my stance on some things…I think? It could be a very ugly and painful procedure, and is not guaranteed. Do we want Charlie to suffer so we can possibly have another 6 months with her, or do we want her to go peacefully? And, should we try every intervention, or let nature take its course? And whichever decision we make, will we be able to live with ourselves after, for the rest of our lives? Such painful, complicated decisions to make.
Now, day 8, Charlie is looking better, but I also know better than to put all of my eggs in that basket, but, of course, we’re still optimistic that our baby is on her way out of here someday in the near future. It’s the craziest thing….when I’m gone for a while, or when Charlie is getting her physio and is fussing with it, I can walk in, walk over to her and touch her and look up at her monitors that keep track of her oxygen levels, respitory rate, and heart rate, and they will ALL level out, almost instantly. A nurse commented on it the other day when I crawled into Char’s crib to cuddle her…her heart rate and oxygen levels, instantly settled, and she stopped fussing. If that doesn’t make me feel like a proud mama walking on sunshine, I really don’t know what it would take to do so! It’s proof that love and attention are important ingredients for good health, happiness, and well being...here’s hoping I never lose my magic touch, and Charlie beats this bug.