No news is good news…right?

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.

hospitalinstr1blog

 

 

 

 

 

 

sdgtsd

 

 

 

 

 

 

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.

blog2 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.

blog3 This is actually from last hospital stay – our last day. She was so ready to go home.

blog4 Another one from today – her eyes looked so amazingly blue i was trying to capture them on film and just couldn’t get the crappy hospital lighting to cooperate.

blog5 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.

DSC_0210 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.

DSC_0011 Oh how I miss those cheeks of my chunkaroo. This picture makes me smile on a daily basis.

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…

Terra

Related Posts Plugin for WordPress, Blogger...

Think of our Wordpress Themes as the framework for your unique Brand. Add your logo, photos, content & change the colors to create a Designer Quality, gorgeous website that your Clients & Readers will absolutely Love
Buy Hello Gorgeous

Comments

  1. I love her big ol’ bow!! That’s a Southern Style bow…down here, the bigger the better where bows are concerned!!
    You’re doing great girl, hang in there and I’ll be praying for you girls tonight from GA!!!

    Muah.

  2. Terra and baby Kendall: saying extra prayers for you all tonight, as I just learned (again, just call me ‘clueless across the street’!) you all are back in the hospital. You are right where you need to be to help her get well, and I pray that you, Terra, get some sleep tonight….if you need anything on this end, please have Ben or someone call. God Bless and Sweet Dreams……

  3. We’re thinking of you guys. Actually, since reading your last entry I’ve been thinking of Twix bars and you guys. I am hoping they figure all this craziness out for you guys quick, so Kendall can show you what she has. There is such a fighter under all those tubes and ugly hospital blankets, you can see it in her eyes.

  4. Terra,
    I think if I looked up “What doesn’t kill us, makes us stronger,” I’d see your picture. You are doing such a good job being Kendall’s mommy/advocate. Your family is still in our daily prayers. When you get home, I will bring you a big tray of taco salad!!! You deserve it!
    Faith 🙂

  5. Terra, I connected with your mom through Facebook recently, and she had this link on her page. I am sorry for all that you are going through, but I have to tell you that I admire the way you’ve kept your sense of humor throughout these challenges. Thankyou for sharing that with everyone who reads this. You have a gift in being able to communicate your feelings very well, and yet being able to keep it somewhat light. Amazing. I am praying that the Lord comforts you and gives you wisdom, and that He will help give the doctors wisdom too; as well as for healing for Kendall. In His Love, Joyce Patterson

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge