Quick Update

I realized after I posted last night that I hadn't updated on the whole 'cold sepsis' scare.  Other than having a really low temperature that one night, Averi has been just fine.  The final 48 hour results came back last night and they were negative (didn't grow anything) so she got her last dose of antibiotic this morning.  I explained to her that there will be no funny business tonight as the antibiotics wear off. :)

(The other day I turned around to find Averi banging her drumsticks together.  The catch?  One of them was hanging out of her mouth.  When I started laughing and got the camera, she liked the reaction and continued doing it.  It looks painful.)

I have also accepted that we will not be going home today, as was once mentioned (not that I really believed it), because Averi's ANC has a mind of it's own.  Over the weekend it went from 320, to 170, to 120, to a whooping 70 today.  It seems to be hovering around the 100 area so I don't know if it will ever finally go all the way down to 0 (I learned that that is called 'nater,' as in "she never natered").  Either way, she won't get to go home until the counts start trending upward.

The rest of her blood is doing really well.  Her hemoglobin (red blood) is normal and her platelet count seems to double every day.  This is the best news to me since her platelets are what got us into this mess in the first place.  Now if we could just get her white blood cells to get a move on.

Double Life

Dan's mom is in town and stayed with Averi last night so that Dan and I could go on a date.  As we were driving home with Kaili in the backseat I leaned back and thought how nice it was to be out with the whole family.  It took a minute or two before I realized that the three of us were not the whole family.

I felt like such a horrible mother.  How could I forget my own child?  I only have 2, it's not like I have too many to keep track of.  It was really bothering me, so I spent the rest of the ride thinking it through.

I decided that I live a double life.  I have one life where I sleep on an air mattress that has to be put away everyday and spend my days caring for my sweet baby girl.  My days are filled with feeding, changing diapers, therapy, naps, occasional walks around the halls, IV's, feeding tubes, medicine, and medical personnel.  This life sometimes allows me to take my baby home, where we stay until we return to the hospital.  Averi never goes out, needs all of her toys cleaned, and is a good reason not to have people over.

My other weekend life is completely different.  I spend it sleeping on a queen bed all alone while I wait for my four year old to come wake me.  It consists of laundry, cleaning, playing pretend, paying bills, going to church, and getting caught up on 'real' life.

Neither one of these lives is normal or ideal.  So the one time I'm actually allowed to go out into the world, my body refuses to acknowledge it as part of my life.  In fact, I'm pretty sure that there are people who see our broken family coming to church and don't even know that we have an angel that is part of our lives.  Does it matter?  No.  Does it hurt?  Yes, because even I am starting to disassociate Averi with our family.

It makes me realize that I took so many things for granted.  A simple trip to the grocery store with my girls.  Getting to play with both girls, on the carpet, with no time restraints.  Spending the night as a family, all 4 of us, and not worrying who will interrupt.  Making dinner and entertaining the kids at the same time.  It goes on and on.

I'm starting to ramble, but I guess my point is that I can't wait to have my life back, my life that consists of my husband and my two girls together on a regular basis.  I hate feeling like Averi is only allowed to be in part of my life, and Kaili in the other, especially when my family IS my life.

Cold Sepsis

Leave it to Averi to teach us about another rare medical condition.

Last night, before I went to sleep, the nurse informed me that she was having a really hard time getting Averi's temperature.  I figured it was just because she wasn't putting the tempa-dot in the right place or leaving it there long enough, and went to sleep thinking the digital thermometer she was holding would do the trick.

Thirty minutes later, she woke me up to tell me that Averi's temperature was 93.something and that she was going to draw blood cultures and start antibiotics.  I must be dreaming, what!?

Apparently if sepsis occurs in an immunodeficient patient it can, but very rarely and usually in newborns, cause the body to have a very low temperature.  The high fever is evidence of the body trying to fight off the infection and a body with no ability to fight does the opposite.  Doesn't really make sense, I know.

Her blood pressure was fine but her legs and arms did feel cool to the touch.  I started getting nervous when she woke up coughing and fussy because RSV is making it's rounds.  Being Averi, however, she woke up happy as can be with a normal temperature - which is 96.8 for her.

Her fellow came by again this afternoon to let me know that Averi will not be going home today, which was funny because we both already knew that we have to wait for the 48 hour results of her blood cultures.

Averi's skin is a little more mottled than usual, she seems tired, and her blood pressure is just a little lower than it usually is.  It might be nothing, which is exactly what I think it is, but it's enough to get the attention of her doctors and keep them on their toes.  (I'm not gunna lie - sometimes I like to seem them squirm a little.)

Candid Camera

When the doctors came in our room this afternoon and said, "We think Averi might get to go home tomorrow," I literally laughed out loud.  Then I quickly searched the room to make sure I wasn't on a hidden camera show.

After realizing that they were serious, I immediately tuned out the fellow who was talking to me and looked at the attending, the 'make the final decisions' person.  Apparently Averi's ANC counts have gone something like this: Sat - 360, Sun - 480, Tuesday - 90, today - 320.  Not only did her counts go up but her platelets have gone up as well, which means her marrow is producing it on it's own.  It's possible that she never got to 0 before starting to recover.

When I asked the doctor if the ANC always had to go down to 0, she replied that 'always' was a strong word.  That's when I said, "So you're telling me that this is Averi and you have no idea what's she's doing?"  The answer was yes. :)

Several hours later, Averi's fellow came to check on her and explain things a little better.  They want to at least keep her over the weekend to make sure that her platelet increase continues and isn't due to the transfusion she received 2 days ago.  They also want her ANC to come up some more, since that is what took so long to recover after the last treatment.

I am now feeling more confident in the 'go home' decision, and with some luck we just might get to go home at the beginning of next week!

Ever since the 'Mickey Breakfast' incident, Averi will not leave her Mickey alone.  I keep finding her with her shirt pulled up and one hand twiddling her Mickey.  I think she does it without even noticing, since she uses twiddling as a calming device, but why, after having it her entire life, has she decided to start doing it to her G-Tube?

I never leave the room and she still manages to pull off the gauze and unplug her tube.  The nurses finally came up with a solution - wrap her entire torso with gauze so that she can't get to her tubes.  This is what Averi thinks of it:

Don't be fooled by her bewildered face.  It only took her a few hours to figure out how to pull it up a little so that she could twiddle her precious Mickey.  She is one extremely smart, yet lazy girl!

High Fashion

I was told recently that my posts have been a little critical lately (is it my fault that half of the medical staff at the hospital are idiots?). :)  I am therefore dedicating this post to the silliness that fills our days and makes them bearable...and to high fashion.

I made new and improved name band bracelets, purple this time, since the pink ones had started collecting fuzz.  I also made blue ones for the cute baby boy down the hall who is also in the hospital for weeks at a time doing count recovery.  We pass in the hall and wave at each other and avoid touching anything germy.

My friend Jennifer made two new hospital gowns for Averi to sport.  She puts so many details on them (velcro sleeves, crossing back, fancy accessories).  I LOVE them!  Thank You!  (This is Averi's new camera face...not bad.)

I have decided to fill my time with projects while I am here to keep from going insane.  Last week's project was making flower clips in every color imaginable and making cute hats to go with them.  I've only gotton one hat done, but the clips are super cute!

 'Lookin' like a Fool with your Pants on your Head' (Thank you American Idol.)

As much as I complain sometimes, life is only bearable if you learn to laugh at it...and that I can do. :)

Pajama Poser

Here are Averi's Flashes of Hope pictures from December.  She was admitted that day and I totally forgot about the pictures so she is wearing what she had on when I woke her up early and brought her to the hospital...her jammies.  We got them back 2 weeks ago and I forgot to post them until now...shameful, I know.

I love how much her personality shines through.  She makes us smile every day!

Idiot!

On the first of every month the interns and medical students rotate what floor they work on.  This was really sad news the first time it happened (back in November) because we really, really liked both the intern and med student who were assigned to Averi.  None of the ones we've had since have measured up, but the med student that walked into our room this morning takes the cake!

Let me set the stage.  Averi is asleep at 8:00am.  The lights are off (after I turned them off because the night PCA keeps leaving the light on when she leaves the room...I'm not annoyed), the blinds are closed, and I am quietly sitting in a chair with the computer.  The med student, we'll call her Idiot, walks in and announces who she is from across the room.

After whispering answers at her and having her loudly say, "What?!" I finally decided that she was not getting the hint to be quiet.  The following conversation commenced:

Idiot: How is she feeling today?  Is she feeling better?
Me: Fine.  She's not throwing up any more, so that's an improvement at least.
Idiot: Is she eating alright?  Does she have a G-Tube?
Me: Yes, she does and her appetite is fine.
Idiot: Does she use her G-Tube or does she just eat orally?
Me: She does both. (Why would she have a G-Tube if she didn't use it?)
Idiot: (Prepare yourself, this is the best part)  Do you think she's ready to go home?
Me: Um...She can't, her ANC is still going down and then it has to come back up.  (Her stupidity caught me by surprise.  Had I known it was coming I would have responded with a "Yes, can we pack up and go home today?")
Idiot: Can I listen to her?  (She then loudly pulls the side of the crib down.)  Does she have a central line? (said loudly while still hovering over my sleeping baby)  What side is it on?
Me: She has a broviac on her right side. (Why haven't you left yet?)
She did finally leave, but not before Averi was wide awake.

I now have a few questions of my own.  Did you look at her file before you so loudly galloped into our room?  Do you even know what kind of cancer Averi has if you don't know that we have to be here for several more weeks for count recovery?  Do I think she is ready to go home?  Seriously?

Do you have kids of your own?  Do you not see that my baby is sleeping and you are waking her up?  Is there no dignity?  Maybe when I inform you about her entire medical history I should let you know that she has Down Syndrome, too.

I digress.  By the time she left the room, I was laughing so hard I had to call Dan and repeat the entire conversation.  It should be a very entertaining next 28 days!