May 2, 2008

I Was Thinking.....

About vomit. Yes I know. Gross.

Why am I thinking about vomit? Because Ainsley's been sick and thrown up a few times in the last couple days and a few people who were there at the time have been surprised at how I "know" when it's going to happen, so its been on my mind. Not that this is new. I can't tell you how many therapists, doctors and regular people have asked me how I know. And it IS uncanny that I can tell. It can be the look on her face, the way she moves her tongue, the way she coughs, or even the way she holds her breath. 5% of the time she gets sick when I think she won't, another 5% of the time she doesn't get sick when I think she will, but 90% of the time I know. How do I know? Is it mommy intuition? Or is it experience? Steve is not a very good judge and he's seen her throw up countless times. I was trying to figure out how many hours of my life have I spent now watching her to see what's going to happen. How many hours suctioning and praying that it wouldn't cause her to vomit? I'd estimate it's about 4,000 times I've suctioned her and watched to see if it was going to cause her to vomit. I'd estimate about 800 times I've seen her throw up. It's a little bit like having a child with the flu that never goes away. One of the moms on the trach forum was saying last week how she lost it over her son vomiting after she's worked so hard to give him a feeding, and I SO totally could relate.

I can't explain what its like to see your child explode like a volcano and vomit their entire feeding up into their face and watch their panic as the thickened curdled milk covers their eyes, nose and spills into their trach like lava. Seeing them thrash back and forth trying not to drown in it. It all happens within a second or two but like a car crash everything seems to be in slow motion and last for minutes. Even if Ainsley never threw up ever again I know I will never get that image out of my head. The feelings of being totally helpless and frustrated. The despair that on a bad day hits you in seconds that can be so overpowering that you scream before you can think twice about whether the neighbors can hear you. I don't think you could get it unless you have a medically complex child that is a chronic vomiter.

So when it seems that Ainsley has stopped vomiting you can imagine how thrilled I am. But I'm hesitant and afraid to do anything differently should it return. I'm a prisoner to the threat of vomit. And so the last few days have brought back all the bad memories.

Ainsley had an unexpected low-grade fever Wednesday and I suspected an ear infection, since no one else in the family was sick. I scheduled a doctor appointment late Wednesday for the following morning. In the morning it became clear that despite being virtually isolated she had somehow caught a cold but it was too late to cancel the appointment so I took her in anyway. The right ear was a little red but we held off on antibiotics, and her lungs were clear. Later in the day she still had a low-grade fever but by night her heart rate was up in the 190 range and at 2am her temperature hit 103.3 on Motrin. Even after I spent half an hour sponging her head with a wet washcloth, put her on oxygen to try to bring up her sats and bring her heartrate down she still woke up needed suctioning a few times after that. It was already 1am when I went to bed because I was working on a photo project I'd planning on bringing to the preschool so I didn't get much sleep. I'd committed to work at the preschool and was even looking forward to it. Every few weeks I think "how bad can it be" and work up the nerve to give it another try. Every time I'm reduced to a blubbery pile of tears at some point in the day but I guess I'm slow to learn. At least today it was at the end of the day not before I even left the house. Since at 8:30 her temperature was totally normal I got ready to go but once she woke up it started to climb again. Still, I figured she can sleep while I filled in as a working parent and she'll just lay in the stroller or on the blanket so she shouldn't get anyone sick. The day goes pretty well. I'm even able to juggle taking photos for the school in between suctioning and tube feeding. Fine, that is, until Adrian refuses to join the class in the lunchroom because he couldn't sit next to his best friend. I'm trying to take pictures of lunch for the teacher and frustrated that my son is causing a scene. Eventually that is resolved when a spot opens up and he can sit where he wanted. Then I'm inside to clean the bathrooms and floors (chalk pounding day) and suctioning Ainsley after she was awoken from napping in the stroller to find she's coughed so much today that she's started to bleed(trace amounts) when the teacher comes in to tell me Adrian is now refusing to come in from the playground. Apparently because he wanted to blow bubbles with the giant bubble wand right when they were being put away. I pick up Ainsley because she can't be left alone and sling the suction machine over my shoulder and run outside to try to help get Adrian in. He's screaming, crying and running from me. Whichever way I run he runs the opposite and carrying Ainsley I can't possibly catch him so all I can do is yell to try to get him to come to me so we can talk. Then he can't even hear a word I say because he is screaming in my ear to leave him alone. All the while I am desperately trying to calm down my four year old who is physically resisting me while balancing my child who is as big as a two year old and as floppy as a baby on my hip while I'm crouched down without falling on my ass. Finally we get him in but he is still crying and screaming and disrupting circle time. Ainsley has to be suctioned because of all the jostling and she throws up. Carrying my sick child and a cup of vomit (thankfully just a little this time) I sit in the corner and cry along with Adrian who is REALLY sad because on top of not getting to do the bubbles and getting in trouble he's now missed hearing the story at circle time and sharing the book he brought from home. I put my arm around his shoulder to comfort myself as much as him. I wonder if things will ever be the way that they were before...Ainsley. Its hard to say that because I love her. Even though things are so much easier than they were that first year when they go wrong it still all feels like too much. I hope that someday things really will be easier, like they were before, still hard like parenting is but not like this where I feel like every day is a test that I'm failing.


  1. Susan -- I think you need a drink! :-) I don't think I'd better answer the question as to whether it gets easier with time. It's just tough being the parent of three kids - no matter how you look at it. Throw in a medically complex child and it's beyond exhausting (as you well know). Hang in there and remember to take care of yourself - it's vital to your mental well-being!


  2. Susan, your post was oddly comforting to me. The last week has been horrific in my eyes, and when Kate vomited for the 2nd time the other night, I did lose it, banging my hands on the wall and crying. I hope it gets easier too!

    Angela (Kate's mom)