Hello to you all. Ava is still doing so well. I hope you all had a fabulous Valentine's Day. We just chilled out most of the day. She has not thrown up once yet today! (I shouldn't have just said that out loud.) At 6 am her feeding pump was alarming so I jumped up and realized it was out of formula. I was about to mix more up when I thought to myself...."Let's see if her morning nausea goes away if I stop feeds now." I think it worked. I am running out of formula so we have been letting her be off the pump for longer periods. I have to call the doctor about her g-tube feeds because the Elecare is prescription and we are still waiting to see if we get approved for assistance for that in the meantime we need more. I have been getting into my last breast milk stash. YES I still have it. I gave her 2 boluses of 10ml's today and she did well with it. She is normally hooked up to the pump that runs over an hour at a time. So far so good.
OKAY I was wondering....where in the world she got the bald spot on the back of her head. This is such a mystery to us. Emeline and her collided on Friday night and then I noticed it. I lifted her hair to see the bump and then was shocked that there was NO hair there. It is about the size of a quarter. I have been wracking my brain trying to think of all possible causes and just can't come up with any. I went back through all my pictures since she got her head shaved for the skin graph and none of the pictures show this bald spot. We are hoping it is nothing and that hair will grow back soon. This is just so strange.
This is one of our every other day things but thought you might like to see it. I did her Hicmann line change. It is a "small procedure" in itself.
Here is the table all set to change her central line. I sterilize it first and then all of this stuff is in sterile packaging. I remove it with gloves then I take off her old dressing, once that is removed I take off those gloves and put on sterile gloves, all while wearing a mask! It takes us about 5-7 minutes. Ava is so used to this that she often falls asleep. I continued to change her dressings, while we were at the hospital the last time. I trusted only myself to keep her line clean. I KNOW what it all entails which now scares the daylights out of me.
All changed!
Proof that we just got done eating supper....it's still on her face! Oh well had to share our Valentine's Day cake!
Her tummy looks better and better with each passing day! I clean her g-tube twice a day with a q tip and water than I put antibiotic cream on it or Desitin. So far it looks great! She is still very tender around it but is getting better with me messing with it for feeds and medicines. OH! OH! OH! Do you know how wonderful and EASY it is now to give her yucky medicines or any medicines? Down the tube it goes no gagging or gross faces. (Just had to get that out right now!) So if you have a terrible medicine taker you might just want to ask your doctor at the next checkup to install one of these puppies! I hear they work on adults as well! ;) ~Just kidding you all!~
Wow this update got long. I didn't really have much to say when I got on here! Okay as usual thanks a million for the prayers. She still needs those healing get well prayers. Love and Blessing to you all!
~Terri
6 comments:
I don't know if you already got my comment because my computer went crazy for a minute. So I may be repeating myself.
she looks like she's gained a little weight. I've never had to try and give Jax meds by mouth because he's always had a tube. Does her line have a stitch or is it just hanging free?
Sounds gross, but the bald spot could be a yeast infection of sorts. My God son had one on his head that caused his hair to fall out in one spot like that. Can be caused, like thrush, from being on antibiotics, which makes sense for little Ava.
Maybe the bald spot on the back of her head is from laying in bed so much at the hospital, and maybe she rubbed her head against the pillow or the bed or something?
Just a thought!
Kathy in West Texas
Jack has a bald spot just like that but we saw the bed sore when he had it. I hope Ava's scar isn't bad and the hair grows back.
Vic
Jack has a similar bald patch but in his case we saw the bed sore (it was hard to heal b/c he was always laying on his head - ECMO days). I hope Ava's isn't bad and the hair grows back. She's a cutie no matter what though!
I'm so glad Ava is doing so good Terri! I'll keep the prayers going!
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