Sunday, February 27, 2011

Daddy's Blood

As expected, Averi's blood counts are dropping.  Luckily, Dan was able to go donate blood this week, which meant Averi was able to get it today when her hemoglobin got too low.
 (Dan's bag 'o blood.)

It totally amazes me that someone can take something out of Dan's body, with no harm to him, and pump it into Averi's body to sustain her life.  Of course, if I think about it too long, it starts getting gross knowing that there is a bag of blood hanging on her pole.
(Note the red tube hanging on the crib rail.)

There was one puking episode today, but only because Dan forgot to tell my sister-in-law, Cherish, to cut Averi's feeds in half.  It's proof that my half volume theory works but really crappy for Cherish who was watching Averi so Dan and I could go to church together.

Saturday, February 26, 2011

It Worked!

All the little tricks we've slowly been figuring out have finally come together to form a solution.  The vomiting has stopped for the moment.  She's on IV fluids so she doesn't dehydrate (again), she's getting scheduled zofran around the clock and an oral dose of phenergan one hour before each meal, and her formula intake has been cut in half.

Honestly, I think it was cutting her feeds in half that finally tipped the scales.  I don't know why it was so hard for the doctors to understand that we didn't need to keep pumping food into her stomach just because she has a G-tube.  I'm so glad it finally worked.

Luckily for Dan, she hasn't puked once since he took over last night.  Maybe he'll be around for something good for a change - I think he deserves it. :)
The only medication that changed today was taking Averi off the mineral oil that was just prescribed yesterday for her constipation (on top of milk of magnesia and colace).  Her doctor today was pretty upset that someone had given her mineral oil while she was puking.  Apparently aspirating on the oil would send her straight to the PICU on a vent.  I think we're okay if she doesn't get it.

The only other exciting thing that happened last night was when I was firmly told that they are strictly enforcing the no air mattress policy.  Don't worry though, they are going to give me an egg carton to put on the couch so it will be as comfortable as possible.  I'm trying to be optimistic and grateful that we at least got 5 months with the air mattress, but I don't think it's working very well.  The good news?  They told me on a Friday so Dan was the first one who had to deal with the crappy couch. :)

Friday, February 25, 2011

Give Her the IV

I'd say I jinxed myself, but I knew it was coming.  Averi woke up puking around 2:30 this morning.  When I asked the nurse to give her some zofran, she said she had just had some recently and couldn't give her any more until 7:00.  So I asked for some phenergan.

By the time the nurse showed up with the meds an hour later, Averi had puked 5 more times.  Luckily, she got the IV phenergan, which they wouldn't give her last month, and she slept through the rest of the night and woke up acting happy.  I was really excited that they had known how sick she gets and just given her the IV (she kept throwing up the oral dose last time) and that it had worked so well.  My joy didn't last for long.

The NP arrived in my room to inform me that no one under 2 is allowed to have IV phenergan, because not enough research has been done on it, and that pharmacy is livid.  But she got it, and it worked, and she'll be 2 in two months (crazy, I know).  There was no use.  After hours of the NP talking to pharmacy, they finally agreed to give her oral doses only as needed.  By then Averi was puking again.

Luckily, the doctors were finally on board with me wanting to get ahead of the puking this time (it only took 4 cycles) and they agreed to only give her half the volume of formula she normally gets over a longer period of time.  Here's crossing my fingers that zofran, phenergan, and not quickly pumping her stomach to max fill will be the solution to a not-so-pukey baby.

Wednesday, February 23, 2011

The Second Half Begins

We came back in to the Day Hospital on Monday to start Cycle 4 of chemo.  I had to twist some arms, but we got one of the isolation rooms again (they are much bigger and have an anteroom which is great for keeping noise out).

The good news is that cycle 3 was only a few days over the '28 day' schedule, so maybe cycle 4 will go smoothly as well.  Either way, hopefully I will do a little bit better with coping. :)  I was also able to find and confiscate the little car for Averi to ride in- it's the little things that keep us happy.
I don't know if the toll chemo pays on your body builds up, but this cycle is really wiping Averi out.  She is sleeping for hours at a time and isn't really interested in doing much.  She looks exhausted all the time.  She's also really constipated, which isn't a new problem but is kind of weird since it is the opposite of the expected side effects.

I hope she's not feeling down for too long, which is probably a silly thing to say since the puking seems to start sooner with each cycle.  My brain has yet to figure out why we must make her sicker to make her better, but I pray everyday that it works.

Thursday, February 17, 2011

Finger Prick

It has been so nice being home for the week and the weather has even been a little bit warmer (not that I'd personally know since I never leave the hospital room :) ).  Even though Averi's counts were so high on Monday, the doctor told us to plan on taking a week off but to still have her blood work done today before an appointment was made to go back in next Monday.

Since I didn't want to drive all the way to the hospital, I called the children's lab closer to our house to make sure that they were open.  They informed me that no one at the lab is allowed to access her port and that I would have to take her to the lab at the hospital.  Luckily I called them as well because they have the same problem.

It turns out I would have to take her to the Clinic (and pay for an entire visit) if I wanted her blood taken from her port.  What's even more frustrating is that I've seen it done enough times I could just do it myself, but that is totally not allowed.

Long story short, we headed to the lab to use a finger stick to fill 2 vials with blood.  I held her down in my lap and prepared for the worst while the tech poked her finger.  She didn't even cry, not one tear.  The only time she got fussy was when I wouldn't let her grab the bloody gauze sitting on the table next to her.  I swear this hospital life has done something to her phsychy.  Not that I'm complaining, but what one year old doesn't cry when you poke her with a needle?

The doctor called later to let me know that her ANC was 7,052!  We have an appointment to start cycle 4 on Monday morning.

Monday, February 14, 2011

Home for V-Day

Averi's counts have been all over the place during this treatment...except for 0.  Last week her ANC hung around 40 for a while, getting my hopes up that she had finally hit bottom, and then on Friday it dropped down to 32, the lowest it's been this cycle.  It's so frustrating knowing that she will stay at the bottom for a while but not knowing if she has even gotten that far.

When her counts went up to 154 on Saturday I didn't think anything of it since they've been all over the place, so it was a nice surprise when they jumped up to 450 on Sunday.  The doctors had said that two consecutive days over 200 would be grounds to go home so we crossed our fingers that they wouldn't drop too much over night.

This morning her ANC was a whopping 1,620!  That's high enough to start the next cycle so it was definitely high enough to go home for a few days...and then Averi woke up with a runny nose.  I seriously debated about not saying anything but knew it wasn't worth taking her home if she just came back the next day with a fever.  We were in luck and they discharged her, on Valentine's Day. :)
(Last night we were playing a game and Averi scooted over behind Kaili so she could play with her hair.  Kaili was an awesome big sister and let Averi have her fun.  It was so sweet.)

Of course good news around here never seems to last for long.  As the doctor walked out, the charge nurse walked in to inform me that we can no longer use our air mattress.  Apparently it is a violation of the fire code and would be in the way if there were an emergency.  Um, I'm pretty sure that if Averi were in a state of emergency I would be awake and totally capable of propping the mattress against the wall.  Not to mention we've been using it for over 4 months now, the couches here suck, and we live here for a month at a time.  I might be a little bitter about the whole thing and I'm pretty sure the mattress is coming back with us next week. :)

Runny noses and future bad sleep aside, I couldn't be more excited!  After what seems like forever, but is really only 134 days, we are officially 'half way' done.  (You have no idea how long I've been waiting to say those words.)  Three of the six treatments are behind us.  Hopefully the last three won't take quite as long as the first ones did.
Happy Valentine's Day!!!

Saturday, February 12, 2011

Pop Goes the Mickey

Poor Dan always ends up having to deal with something crazy when he is at the hospital on the weekends.  Today was no exception...

Right before dinner, for some unexplained reason, the balloon that holds Averi's Mickey button in place popped.  She has had a Mickey for quite some time now and we have never had this happen before.

She was just sitting on her bed playing when Dan looked over and saw her holding the Mickey.  He thought she had pulled it out again, but upon closer inspection realized that it had popped and fallen out all on it's own.  My only guess is that she ripped a minuscule hole in it when she was chewing on it the other day, but no one really knows.
Dan immediately plugged the hole with his finger, to keep her stomach contents from spilling out, and called for the nurse.  Since they don't keep GI supplies on the cancer floor, a new Mickey had to be ordered.  When the order finally arrived it wasn't even a Mickey button, so another order had to be made.

An hour and a half later, the right Mickey finally arrived.  Of course by then Averi was extremely hungry and the hole in her stomach had closed some so Dan had to really work to get the new Mickey back in, resulting in lots of screaming and crying.  Really frustrating? Yes.  Totally random?  Yes, but then again, Dan was staying there. :)

Friday, February 11, 2011

At My Limits

Two and a half weeks, that is my breaking point!  Apparently living in the hospital slowly wears on me until my brain eventually turns to mush at 2 1/2 weeks.  To say this week was hard would be an understatement.  I literally stopped functioning and turned my brain off because I was so overwhelmed with responsibilities.

That being said, I am sitting here 3 weeks later (after getting lots of requests and feeling much better emotionally) trying to get back on track, remember everything that has happened, and catch all of you up.  We'll see how it goes...

Averi's temperature continued to be low all through the week, which didn't sit well with the doctors.  Since she didn't show any other signs of cold sepsis (low blood pressure, irritability, cold extremities, etc.) I asked why they were so up tight about it.  That's when someone finally explained to me that there are other more likely things that could also be causing a low temperature, like a fungal infection, that wouldn't show up on the blood cultures.  The only problem with that theory is that she would still be showing other symptoms, like cold sweats and being achy.

Being frustrated with her low temperatures, the doctors finally put in an order to take all of her temperatures orally.  Yah, that went over really well.  Have you ever tried to take an oral temperature on a baby?  She literally screamed until tears rolled down her cheeks while the PCA tried to hold her mouth shut.  Needless to say, the resulting temp was not accurate.
The therapy sessions were even lame this week because many of the therapists were out sick.  This was made up for, a little bit, when Early Intervention brought finger paint.  I didn't know how Averi would do since some kiddos with DS have sensory issues, but she loved it.  I think she might have loved it too much because she kept trying to lick her fingers and we had to cut the painting short.  At least she was able to make a few really cute pictures and hand prints first.

Monday, February 7, 2011

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.

Sunday, February 6, 2011

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.

Friday, February 4, 2011

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!

Thursday, February 3, 2011

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. :)

Wednesday, February 2, 2011

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!

Tuesday, February 1, 2011


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!