Today has been just a day. Kendall is very irritable so when I am not trying to calm her back down and get her asleep/happy, i am trying to restore some sense of calm to my frazzled nerves. Her pneumonia seems to be improving from a clinical standpoint – she isn’t working so hard to breathe anymore, the coughing fits are spacing out, she is doing well on her steroids and antibiotics. So again, short term, she is doing good. She definitely gets tired towards the end of the day and is definitely still dependent on the breathing treatments since she starts huffin’ and puffin’ right before its time for them to come in again, but compared to monday – huge improvements.
Longer term – we still look for answers. Dr. Aljadeff called Infectious Diseases in again to look at WHY does she keep catching every bug under the sun and WHY does it attack her lungs every time? – and Neurology is back in the picture to take another look at the hypotonia – which they had hoped would have improved in the month since we’ve been here with her NG nutrition. So we started this morning bright and early with a blood draw at 6 am. I was actually quite impressed with myself and my “patient advocate” abilities for Kendall – I told the tech that if he would just take the time to get a good poke, and didn’t SQUEEZE the blood out, she should be cooperative. And sure enough – he got it all right away and Kendall never made so much as a whimper – just sucked on that big ol’ green binky and stared at him the whole time! It was about 6 vials of blood today so that was pretty good! All I know that they are running at this point is an ACL carnitine for muscle myopathy (I am just putting together words I hear, I have no idea what that actually means), and then a bunch of IgA, IgE, blah blah blah tests to see how many, if any, immunities Kendall has on her own. They are worried that these tests may still come back normal, which i guess is a bad thing because that still won’t give them any answers – it just means she may still have a lot of my antibodies in her system. To which I say – well dang, if this child has been THIS sick, THIS MANY TIMES, even WITH my immunities – she is in for a world of hurt once those antibodies are gone! I am sure I am not contributing too much to her, seeing as I myself seem to be not the bastion of health around our house…
but anyways. That’s where we are today. Lots of blood drawn, and no answers to match. Seems to be the story of our lives here in the hospital. She is also on restrictions because she has Entero/Rhinovirus. They are not at all sure if this is the cause of her pneumonia, or if she caught a secondary viral infection due to the weakened state with the pneumonia. And then it brings up the question of – ok what caused the pneumonia. At this point they are thinking it is aspiration pneumonia, meaning she is still aspirating even with the NG tube. This all contributes to frustrating the piss out of me because it just seems like we can’t give this kid a break. She has all these odds stacked against her, and then we just keep adding more to the stack. And still we have no answers as to how to help her get a leg up to get over this pile of craziness. So instead of sitting here and fuming in my frustration, i’ll share with you some of what I am learning!
First Lesson: How to get a baby to sleep in the hospital And yes, I am that bored that I pictures of myself getting her ready for bed last nite.
And that is what I do with my nights. I don’t have four of them to tuck in, I only have one, so I can take a half an hour to get the process done. I sometimes wonder if I’ll ever remember what “regular” life is like – because I am so accustomed to the monotony of hospital life, and the chaos of a special needs child even when I am at home. some days I am just so tired I wonder if I’ll ever be untired again.
And since I have hard drive space again – here’s some pics of the boo-boo and the others.
I got sick of all the nurses referring to her as a boy, so I stuck the bow on her head. Like its my fault they don’t have any cutesy pink hospital pajamas in size “shrinky dink”. SHe’S A GIRL!!!!! That mess of gauze in the foreground is her IV taped and padded and stuck to a backer board covering her whole arm.
The Kealey look. I hear ALL THE TIME how much she looks like Kealey – which I kind of see, nowhere else as much as in this picture. She looks like she is ready to just stand up and yell at us all about how she REALLY feels about eating through a tube in her nose and sitting here in a hospital bed all day. Someday soon she will give us a piece of her mind. and I’ll gladly take it.
A happy sissy getting to hold her baby sissy today during a quick visit. Somedays I stop and think about how crazy our lives are at this stage, and how well my babies are holding up to it. How does that old saying go – What doesn’t kill you makes you stronger? Our family will be nice and strong by the end of all this. We could not do it without the support of our family, church family, friends, neighbors and Lord Jesus Christ.
Ok the picture thing isn’t helping me…
I am tired and it is bath time for Kendall and then time for bed if she’s cooperative…