We’re back in the hospital. Charlie has a cold/flu that within two days of rearing its ugly head, is already making her last cold, which she was hospitalized 15 days for, look like just a small case of the sniffles. Charlie has diarrhea, an off and on fever, and has thrown up twice, she has only thrown up 2 times in her life, so it’s definitely cause for alarm…also, throwing up is dangerous for an SMA child because they can’t swallow and can asphyxiate on it. We stopped feeds for a few hours and are now slowly administering her overnight feed to see if she gets sick again, if she does, they’ll have to put her on an IV…we’re waiting to see the radiologist in the morning who will change Charlie’s g-tube (tummy feeding port) to a jg-tube, apparently it’s a fairly easy procedure and it will send her feeds to a different part of her tummy so she can't throw up. The nurses have been deep suctioning Charlie’s throat and nose and she already has a lot of green mucus, which is a bad sign…that means it’s thick and threatens to form a mucus plug in her throat, which can cause her to choke and stop breathing, which would require us to make some big bad decisions...when we were in the hospital last time, her secretions were clear until about day 10 when she was just beginning to get the last of the junk out, it happening so early this time around really has me worried. This is obviously a pretty wicked bug.
It all feels like the beginning of the end to me. I try to stay optimistic, but I feel like whenever I accept Charlie’s condition and decide to live our/my life as if she was ‘handicapped’ instead of 'dying' I am quickly and quite rudely reminded that NO, she is not handicapped, and that we will never really be 'living' with SMA, and we will not be 'beating' SMA, we will instead be constantly tortured by it...SMA will constantly be holding us by our ankles, and threatening to drop us hundreds of feet below, into the grieving parent abyss. Morbid, I know, but realistic. I’m tired of tricking myself into thinking otherwise, only to be jolted back into reality when my baby girl is hospitalized, yet again, and her oxygen saturation machine is showing me, PROVING to me, that she is in fact struggling to breath. I think Matt and I get used to Charlie’s behaviors, thinking they’re 'just Charlie' when in fact they’re 'just SMA'. Before we knew anything was wrong with Charlie she would make this little gurgling sound while breathing fast and heavy…Matt and I just thought she was being silly and we’d get face to face with her and copy her back, not knowing that this 'game' was actually Charlie struggling to breath. Even now, I think we’ve gotten used to a lot of Charlie’s struggles, and have forgotten or brushed off what they’re really reminding us of…it’s easier that way, and it’s our way of accepting Charlie for everything she is.
All the statistics say that 90% of type 1 SMA children will die by the age of 2. That statistic has been stuck on repeat in my head all day. I’ve spent a lot of time in the recent past wondering how it happens, how does a child go from stable to not stable? What are the signs and situations leading up to it? How can we be prepared? And, now I see. We went 11 months since Charlie’s diagnosis without a major glitch…no colds, no flus…A LOT of what ifs, but nothing ever actually really happening. Until recently. Now, it won’t stop. Because Charlie never really got back to her old self (her baseline, as the doctors call it) since her last cold, this illness will wreak more havoc on her body this time around because her weak body is even weaker than usual…I’m REALLY praying that this is as bad as it gets.
Matt and I have discussed it and we’ve decided that, from now on, whichever parent gets sick , they will have to abandon the home and avoid the other and Charlie until they’re better…it has to be done…there is just no way that we can avoid passing the sickness on in a 1000 sq ft, 1 floor condo…that and Charlie is just too tempting to smother with love and kisses and it just wouldn’t be safe to do so. So, the only option is to remove ourselves from her space until we’re no longer sick and we're not putting her at risk anymore.
I love my little Pebbles, and I can’t stand thinking of life without her. Get better Char. We love, love, love you.