Friday, December 31, 2010

Clean Vents

This is going to sound like a really silly thing to post about, but I cleaned all the air vents in our house today.  I have been wanting to do it for a really long time and finally found the motivation in my daughter with no immune system. :)

My vacuum died right before Averi was admitted to the hospital back in October, which is when I first decided that cleaning the vents had been bumped up on the priority list because of Averi's health.  Long story short, my parents gave me a vacuum for Christmas that has a long hose on it that can fit down my vents.  I found all kinds of stuff down there, (monkeys, cars, food, dog toys, money, and my favorite - a sharp piece of metal) all of which was from the previous owners.

Being the OC person that I am, it didn't stop there.  I then made a bucket of bleach water and sanitized all the vents.  I am proud to say that we are starting the new year with the cleanest air this house has ever seen.

It's amazing how much more aware of germs I am now.  All of Averi's toys get cleaned with alcohol, there are bottles of sanitizer everywhere in our house, and we go through paper towels like you wouldn't believe because they are only used one time and then thrown away.  Sometimes I wonder what I'll be like when we have another baby

Wednesday, December 29, 2010

Still Masked

After being home for 2 days, we headed back to our second home to have some blood work done today.  They told us to plan on being there for a while because more than likely Averi was going to need a red blood transfusion.  When we left on Monday her hemoglobin had been hovering right above the transfusion level for a couple of days.  Red blood cells take at least 2 hours to transfuse, after waiting for them to be transferred to the clinic, so I was planning on being there all day.

So we packed up the diapers and toys and feeds and blankets and magazines...and headed over to the clinic.  This is a little nerve racking because we have to walk down the halls past tons of possibly sick people not wearing masks.  I always leave her in her car seat (thank goodness she is still small enough for an infant seat) and put her in the stroller with a blanket over her head, both sun visors up, and maybe a blanket over those as well.  You can never be too cautious, right?

Whenever we go we wait, then they take vitals, then we wait, then we go back for the blood draw, and then we wait for the results.  Today was nice because Averi had to get a dressing change (the dressing over her broviac site) and a cap change (the caps on the ends of her broviac line) and they were able to do it while we were waiting for the blood work to come back (both have to be changed once a week when we are at home).  What blew my mind was that the nurses didn't even wear masks while working with Averi.  Hello, she has almost no immune system and I'm not wearing this mask for fun!
(I ran an errand yesterday and came home to find Averi snuggling with Grandpa.  Yes, the look of confusion on Averi's face is because he is wearing a little kid mask.)

When the preliminary results came back, Averi's hemoglobin had actually gone up a little on it's own - no transfusion!  She also had an ANC of 178, a great improvement from 88 two days ago, but still way below the "go home" of 500.  So we are all stuck in masks for a little bit longer but at least we got to spend the rest of the day at home. :)  The doctor doesn't want us to come back until Tuesday, so we get a long weekend break!

Monday, December 27, 2010

Are You Serious?

When the nurse told me that Averi's counts were up to 88 today, I was excited for the upward trend, but when she came in this afternoon and announced that we were going home I was in shock!  It was totally unexpected and I asked her if she had walked into the wrong room or if she was playing a joke.  She assured me that she was serious and I asked to talk to the doctor.

It's not that I don't want Averi to go home, of course I do, but I just wanted to make sure that the doctor knew what she was getting in to.  I have a house full of family and her counts are no where near 500.  He explained that her numbers were trending up so he wasn't worried about them going back down again and that everyone at home would have to wear a mask when they were around Averi.  Um...ok?

Once again I am faced with the moment I have been waiting for for weeks and my excitement feels forced.  As much as I 'love' being at the hospital, going home makes me nervous and doesn't really provide much more freedom.
(While I packed I put Averi in the jumper for the first time - do you love the backdrop?  She liked it, although I don't know how much actual jumping she did.)

So, 3 weeks and 6 days after starting cycle 2, we packed up our Christmasy hospital room and headed home decked out in masks.  It's funny, if Averi would keep a mask on, none of the rest of us would have to, and since the main hallway of the hospital is infested with germs I have to carry Averi to the car with a blanket over her head like I'm trying to smuggle her out of there.  Hopefully it was a safe smuggling and we will have an uneventful time away from the hospital.

Sunday, December 26, 2010

Hospital Christmas

Contrary to our hopes that Averi would have a Christmas miracle and wake up with an ANC of 500 (the magical number needed to go home), she went back down to 0 yesterday.

Thankfully, we made plans to all stay at the hospital Christmas Eve, against their rules ;), and it didn't matter where we were.  Kaili slept in the bathtub and Dan and I managed to get a full size air mattress into the room.  We spent Christmas day opening presents, hanging out in our pjs, and making memories.  It was a blast!
Her counts went back up a little today and we are crossing our fingers that they will continue to go up so she can come home for a little while while my family is here visiting.  Other than waiting, which seems to be our favorite game in life, we are doing great!

Friday, December 24, 2010

Stylin'

One of my friends made the most creative gift for Averi that I have ever seen (and definitely never thought of)...a stylin' hospital gown!  I LOVE it, and so does Averi!
You can't see all the cute details because Averi wouldn't sit still, but there is a detachable flower behind her right hand and a slot with a bow on the bottom left for her G-tube port.  The back has double ties so that her skin is covered up and not hanging out in the breeze and the shoulders have buttons and velcro.  It is for sure the cutest hospital gown ever!


By way of the "are we getting out of here for Christmas" news...no we are not.  Yesterday was the first day that Averi's ANC wasn't 0, it was a whopping 6.  It may not be much, but it promises a soon increase, which is more than we've seen in the last several weeks.

Today her counts went up to 54.  The doctors came by and said that she may be able to go home for a few hours tomorrow but that was it.  Dan informed them that if she couldn't go home tonight, so that she could be there for Christmas morning and then return to the hospital later, then it wasn't worth it (they don't know about our plan to have the whole family stay the night in Averi's room).  Besides, if her counts don't go up at all tomorrow, it won't matter anyways.

While it's not the ideal way to spend our Christmas, we will definitely make the most of it.  I'm sure it will be a Christmas to remember. :)

Thursday, December 23, 2010

Therapies

I realized that amidst all the chemo and getting sick (and not being in the mood to blog or do much of anything other than wish for sleep) that I haven't updated you lately on Averi's therapy sessions.  She is doing really well.  I sometimes wonder how much therapy really helps, since there is no way to know what would happen without it, but at least it gets her out of her bed and gives her some new faces to look/cry at.

Physical Therapy is always a process and not always super fun, but it is the most needed.  Averi recently learned how to turn herself in a circle on her butt, using her feet as leverage.  This is wonderful because it is getting her to move more and it is teaching her that she can use her body to get to what she wants.

She has also started leaning forward and putting weight on her arms while she is sitting.  This includes putting weight on one arm while reaching the other arm to get a toy.  I know it sounds silly, especially for a 19 month old, but it is such a big deal!  She hates using her arms or having to bear weight on any part of her body.  Unfortunately, she won't lean on her arm to side sit, which would help her transition into laying down, but instead combines her new tricks and turns until she's facing what she wants and then reaches for it.

Last week they decided to get leg braces to help her with standing up.  They cover her entire legs and keep her from bending her knees when being supported in a standing position.  This allows us to push her hips forward into the correct position without having to grow extra arms to keep her legs straight as well.  She hasn't decided that she doesn't like them yet and even stood at a chair for 10 minutes while the therapist supported her.  She still refuses to put her feet down on her own so I'm hoping this will help teach her to put some weight on her feet and legs.
(She was yelling at me in both pictures, thus the open mouth and angry eyes.)

Tummy time is still nonexistent and the PT brings something different to try with her every time she comes.  She will occasionally tolerate it for a little while but only when it is forced on her.  If she has to roll onto her tummy to get a toy, then it is too far away and not worth getting (yet she sleeps on her tummy).  I keep reminding myself that if she were mobile right now things would be much more difficult but it's still hard to swallow the fact that she's no where near crawling.

Occupational Therapy is much more fun.  Averi loves to draw scribbles with crayons on paper or play with her magnadoodle.  She is awesome at putting cookies in a slot, taking rings on and off a pole, and nesting cups inside each other.  She's really close to stacking blocks and not so close to putting large puzzle pieces back in the right spot.

Speech Therapy has really blossomed lately.  We are mostly working on signing right now and Averi is reluctantly responding to it.  I have to admit that her first sign was Dad, right before she was admitted this last time.  Dan's pretty proud of that, even if she only does it when he tells her to and then shows it to her.

Today she was showing off at therapy and signed 'more' several times (when a toy she was playing with was taken away and she was forced to ask to play with it some more) and 'please'.  She even signed 'all done' for the first time when it was time for the therapist to go.  All of her signs still need some interpreting and definitely need some motivation (she only does them when being shown and asked) and I'm not so sure that she understands what any of them really mean, but it is definitely a stepping stone.

Therapies or not, Averi is making progress, but always at her own pace.  Recently she looks older to me and I finally decided that it's because I can see her neck.  She's losing her baby-ness and becoming a toddler (minus the toddling).  I am so proud of her!

Tuesday, December 21, 2010

Not Going Anywhere

I came to the realization this weekend that if Averi's blood counts haven't started going up by now, they probably won't be high enough to go home by Christmas.  After getting some rest in my bed at home this weekend, I am accepting of this prognosis.

This morning when the doctors did rounds, the primary doctor asked me what my thoughts were about where Averi would be for Christmas.  When I told him what I had decided he responded that not getting my hopes up was a good thing to do because she most likely wasn't going anywhere.  His overly obvious statements make me giggle, but it might have something to do with my lack of social contact.  Either way, some back up plans are being made for Christmas this year.
(Our little texting cuties.  Who says technology is affecting us at a young age?)

I must announce that last week was, to put it mildly, a hard week, but I am pushing forward and ready for a new week.  It might help a little that Averi is feeling much better, although still not 100%, and slept through the night last night, but that might be a stretch. :)

On a side note, this experience gives us so many awesome opportunities to meet some wonderful people.  Over the last few months we have been given the chance to get to know some of the other patients on the floor.  I promise you, no matter what life gives you, there is always someone who's life is harder then yours...even if your child has cancer.

Maybe I will share some of their stories one day, when it's not so fresh and personal to them.  I am so glad that if we had to go through this trial, we are (hopefully) getting it out of the way while our kids are young and their spirits are hard to break and their memories are few and far between.  One day this will seem like another lifetime and we will have moved onward and upward (well, at least that's what I tell myself anyways).

Saturday, December 18, 2010

Not Sepses

After 48 hours (I still say there has to be a faster way of doing it) nothing grew on Averi's cultures.  It was just a cold, or at least something that wasn't in her blood stream!  Although it left her puking and with a high fever, it did not send her to the PICU.  I guess I'll count that as a blessing.

She's still not really in the mood to do anything but her fever is gone and her antibiotics are being readjusted.  She won't eat and definitely won't drink anything, but she's not in the PICU.  Hopefully she will start feeling better soon.

In the midst of all this being sick, Averi received a very sweet present this week.  Each member of Kaili's preschool class made Averi a Christmas Get Well Card with a yarn tree on the front.  The letters were so cute!  We hung them up in Averi's hospital room so that we could all enjoy them.  (Note the Christmas lights that we had to jump through hoops to keep up on the walls.  If we have to be here during Christmas time, we're gunna make it festive, dang it!)

Friday, December 17, 2010

It Gets Old

The last post was really long, my apologies, but that is life right now...long and tiring.  I so need to vent...

When we first heard the diagnosis and treatment plan, I thought I was mentally prepared for 6 months of craziness.  I was NOT.  We are now 3 months into a '6 month plan' and not even done with cycle 2.  This is half of what I thought it would be and I am done.

It gets old asking people for help all the time, even if they say they don't mind.  It gets old having to schedule 4 people's lives so that we can have an hour or two together every night for dinner.  It gets old rushing through dinner and hurrying your 4 year old and not ever getting to spend real time with your husband or family because it's almost bed time and everyone has to get up early tomorrow to start another crazy day.  It gets old not being able to be the mother or wife you want to be because you're just stretched too thin and you hope someone else is making up the difference.  It gets old not being able to exercise and feeling yucky all the time and staring at the same walls and people.

It just gets old and there is no end in sight.  I realized today that we will still be here when Averi turns 2 in May.  When Averi was born, I accepted that we would never have a 'typical' life, but how far from typical are we expected to venture?  How many times am I going to take out my frustrations and lack of sleep on my husband before he gets tired of it because he is so sleep deprived himself?  How long?  I just want it to be done so we can go back to whatever 'typical' is supposed to be for us.  I was so not prepared for this.

Thursday, December 16, 2010

Hope It's a Cold

Tuesday was another normal day at the hospital.  Averi is continuing to have sessions with OT, PT, Speech, and Massage. Feeding is going about the same with interest in purees and not so much interest in drinking.  Oh, and did I mention she didn't sleep that night?

I hate that I can tell when Averi is about to get sick and no one can do anything until some 'real' symptoms show up.  She rolled around in bed crying all night and her head felt really hot to me but she had no fever.  PT even mentioned that she felt warm Wednesday morning but she still had no fever.  She wouldn't eat anything and literally fussed all day.  When she couldn't even nap for more than 15 minutes without waking herself up crying, I demanded that something be done.

The nurse finally called the doctor for some Tylenol, but only after I told her that Averi is teething.  I also explained that Averi got all four molars first and never got fussy with any of them, but all she heard was teething and then went and ordered some Orajel.

It literally took an hour and a half to get the Tylenol, and by then Averi had cried herself to sleep while I rocked her.  Luckily (I guess) Averi finally had a fever by then (which the nurse also attributed to teething) and I asked that a doctor come see her.  She makes me way too nervous when she starts getting fevers.

Of course, by the time the resident arrived, she'd had Tylenol on board for 2 hours, had no fever, and was happy as could be (for the first time in almost 24 hours).  They said she looked fine and to call them if we had any concerns...um isn't that what I did 2 hours ago?  They also said she couldn't have any more Tylenol (the only thing making her happy) because they didn't want to mask any symptoms if she got worse.

As only a mother can know, she got worse.  By 10:00 last night she had a fever over 101.  They took cultures and started her on 2 hard core antibiotics.  All I could think was, "Please don't be septic!"  She was hooked up to something all night, as she needed more platelets and antibiotics.  The nurse and I took turns rocking her all night long.  Her fever got as high as 102.6 and her whole body was on fire.  My only hope was that her arms and legs were hot as well (sepses causes the extremities to go cold as the body works to protect the vital organs).

By this morning, I realized for the first time that she could be sick without being septic...duh, I know.  The doctor explained that, as bad as it may sound, the best option would be for her to have a cold.  So that's what I hoped for, all day long, as she lay in her bed refusing to even sit up.

As good things always come in pairs, I also noticed a large bump on Averi's bum as I changed her diaper before she tried to go to sleep last night.  She screamed when I wiped it so I showed the nurse and he said that it was a hemroid.  I asked him what we could do to treat it and he replied that nothing could be done unless it was really large and needed to be surgically removed...and that her's is pretty large for someone her size.  Seriously, that's what you're going to tell a mom who thinks her child might be septic?

This morning the doctor explained that chemo breaks down the body, including the intestinal walls, and can sometimes allow normal GI bacteria to enter the blood stream.  This could be reason for her to become septic and they are going to keep a close watch on her cultures for a GI bacteria that can cause respiratory problems, especially now that she has the hemroid.  They also switched her to an even stronger antibiotic that targets GI bacteria.

The only thing that trully cheered Averi up today was when Music Therapy showed up.  She loves music so much.  She still wouldn't sit up, but she danced while lying down and shook her maracas and tapped the drum while the lady sang and played her guitar.  Averi even smiled for a little while.  It was a miracle.  It was perfect timing (something was set up yesterday because Averi won't leave a mask on and therefore can't leave the floor to go to group music time and other activities) and I can't wait for them to come again.

Tonight there is still nothing growing on her cultures and I am hoping the antibiotics start kicking in soon.  I really hope it's a cold!

Tuesday, December 14, 2010

Grandma's Blood

Today was another uneventful day, which is good but still draining.  When the NP came by this morning she said that, as expected, Averi's blood counts are starting to drop.  They tried to wait as long as possible before having to give her blood products, since there is always a risk, but they had waited long enough.

Averi's platelets were 16 (20 is means for a transfusion) and her hemoglobin was 7.3, which should have left her tired and pale.  Instead she was chipper as ever; the NP couldn't believe it.  This meant she had to get platelets and red blood today.

Lucky for us, Grandma direct donated some blood while she was here last week.  This was the first time Averi was able to get blood from someone we know, which was pretty cool.  Grandma tried to pass out while she was giving the blood, but she held it together and made the sacrifice for Averi, which is greatly appreciated!  Averi kept playing with the blood tube and trying to eat it...um gross.
After getting her blood transfusions, Averi was much happier and more energetic.  I decided it was time for a project and set to work determined to find a way to keep Averi's name and allergy bands on her legs.  Her feet are so tiny that they fall off all the time!

So I rigged up fleece bands that I could tie around her ankles.  I don't know how long they will last but at least they look more comfortable and they stay on.  (I know what you're thinking, and yes I do need to get out of the hospital more often.)
 Averi seemed pretty pleased with today's accomplishments!
P.S. - If anyone ever wanted to direct donate blood for Averi, not that we are asking but because people have asked us, she is A positive.  Contact me and I will add your name to her list of donors.  Then you just go to a Red Cross (after they get the paper work) and they will send your blood to us. :)

Sunday, December 12, 2010

Oral or IV

I know, I know, I shouldn't have left you hanging after that last urpy post.  Don't worry though, Averi has taken posting on the blog into her own hands.  I'm not sure if it will be more than raspberries but at least she will be posting.
After Thursday night we re-decided that nighttime is Averi's yuck time.  Remember how we gave her Zofran every night when we were at home?  Well, we forgot about that when we came back to the hospital, just like we forgot that Thursday was going to be the rough night.  Anyways, we have been giving her Zofran at night again and she has been doing just fine.

Dan stayed with Averi over the weekend and had a little confusion with the nurse about the Zofran.  At home we give her an oral solution but at the hospital they give it to her as an IV.  When the nurse asked how they usually gave it to her, Dan told her that we just push it in (talking about putting it in her G-tube).  The nurse seemed really confused and said that the order said it should be over 15 minutes (if she had the order why was she asking Dan).

After much debate she hooked it up to the broviac as Dan tried to stop her from giving an oral med in her IV.  Long story short, they finally figured out that they were talking about two different ways to give it.  At least Dan was paying attention. :)

Other than that, it was an uneventful weekend, which is just what we like.

Friday, December 10, 2010

I Jinxed It

Yesterday all was well in the world, and then I went and posted about it.  When I said that Averi was feeling great I forgot that last Thursday was the day we went home from the hospital and Averi spent the entire night throwing up.

Well this week's chemo was no exception.  As Dan went to lay Averi in bed before we headed home, she threw up all down his front.  She was fine all day but she really fought eating dinner, more than usual, and seemed a little fussy for the rest of the evening.  Apparently her tummy wasn't feeling too great because she gave dinner back.

The nurse ordered some IV Zofran and we did the usual cleaning up.  Poor Averi was so exhausted that she fell asleep naked with her eyes half open while Dan was holding her.
Things calmed down but then she had another bigger episode.  Once her stomach was empty and the Zofran had kicked in, she slept for the rest of the night.

What is up with this?  I even knocked on wood when I said things were going well.  From now on I will only have bad things to say so that Karma will stop kicking me. =P

Thursday, December 9, 2010

Flashes of Hope

We finally got the pictures back from the photo shoot in October...it was worth the wait!







Wednesday, December 8, 2010

Waiting for the Storm

We were told that this cycle of chemo would probably be the hardest since it is more concentrated and she gets it twice.  Well if this is hard, sign me up for a round.

Averi is doing awesome (knock on wood...no seriously, we can use all the help we can get).  I have to admit that it makes me a little nervous because I remember saying something similar right before she started throwing up for 2 days and then taking a trip to the PICU.  She hasn't even acted sick at all and only complains because she's bored out of her mind (I know the feeling).

She did start showing signs of the chemo today when her blood work showed that her hemoglobin and platelets had dropped.  This is expected and means the chemo is doing it's job, but she needed both platelet and red blood cell transfusions.  Luckily she hasn't started showing negative reactions to getting blood products yet.


I have a confession to make.  Someone we know had to have follow up tests done after getting bad results on a mammogram.  When she emailed everyone to let us know that it wasn't cancer, I didn't have the expected sigh of relief.  I wasn't happy for her, not that I was mad either...I was jealous.

Why is it that my baby has to suffer through cancer when someone who's older gets a free ride?  Why is it acceptable for me to think like that?  It's not like her having cancer would take it away from my daughter.  It's not like our lives would somehow be normal again if someone else's got torn apart.  So why can't I be happy for her and congratulate her like all the other people who's kids aren't living on the oncology floor at the hospital?

I hate that I reacted that way and I hate that I feel justified in doing it.

The Faster Way

Averi came back to the hospital today to finish getting the chemo for cycle 2 and then stay for several weeks until her blood counts come back up.  Our time at home always seems so short.  Just when we've settled into a somewhat 'normal' life, (if normal consists of your 19 month old sleeping in your room and waking you up at odd hours of the night) it's time to pack up yet again.

I was thinking the other day how lucky we are that Kaili still gets to come see Averi at the hospital.  Last year, because of the swine flu, kids under 12 couldn't visit people at the hospital from the beginning of October until April.  We have already been allowed to enjoy 2 months more than that.  I know flu season will start soon but I am so thankful for the time we've had to spend as a family, even if it isn't 'normal.'
Luckily Averi has been feeling much better since getting the zofran and even started eating well on Sunday...just in time for the trip back for more chemo.  Since we didn't start this admission with a trip to the OR or the PICU, we started at the Day Hospital.  I was told that the point of the Day Hospital was to get the chemo started faster, without having to do all the admission paperwork, and then being transferred to a room later on.

When chemo was finally started 3 1/2 hours after our arrival, Averi and I were a little concerned about how long the slower way of just being admitted to the floor would take...
We did finally get moved to a room on the floor, that didn't consist of a curtain wall (which is great for napping babies by the way), and spent the rest of the day hanging out as usual.

Saturday, December 4, 2010

Clapping

I realized today that some of Averi's recent accomplishments have been overlooked as life has taken it's toll.  I am proud to say that sometime in the last month Averi has learned to CLAP!  It is super cute and very nonrhythmic, but clapping none the less.  She gets better at it everyday and will do it any time you say, "YEAH!"

She has also become very proficient at blowing kisses.  This happened in October when she was in the hospital for her first round of chemo.  She makes kisses and puts her hand over them but never really blows them away.  I love it!
video

Friday, December 3, 2010

Come on Zofran

On the way home from the hospital yesterday, I stopped to pick up Averi's Zofran (nausea medicine) only to find out that it was out of stock and had to be ordered.  As I drove away, all I could think was that she better not feel crappy between now and "this time tomorrow" (as the pharmacist said) or I was going to be really mad.

Mad doesn't even begin to describe my feelings at 3:30 this morning as I held a towel under Averi's chin for over an hour as her body repeatedly heaved.  I got to a point where I just stopped trying to go back to sleep because my feet kept getting tangled in the sheets as I panicked to grab the towel, turn on the light, and get Averi sitting up so that she wouldn't aspirate on her throw up.

We all must have eventually fallen back to sleep because the next thing I knew it was time to feed her breakfast...right, like that's going to end well.  I left her in her booster with her bib on until she was done eating and her tube feed was finished, just in case it didn't stay down.  Then she pooped.  I laid her down and turned around to go get a diaper just in time to hear her lose her breakfast on the carpet.

Needless to say, Averi spent the rest of the day wearing a bib so that she wouldn't get her broviac dressing dirty/infected and I spent the rest of the day jumping at every sound she made (do you have any idea how often she blows raspberries?) and keeping a rag on my shoulder just in case.

By the time Dan got home with the zofran tonight, she was happy as could be and in no need of it.  Little does she know, we will be giving her some when she goes to bed tonight.

Thursday, December 2, 2010

Home Sweet Home - Part 3

As part of the chemo regimen for cycle 2, Averi has to get a big nasty shot in her leg after the first 2 days.  Since she got her last dose of chemo during the night, the nurse woke me up this morning to let me know that they were icing her leg in preparation for the shot.  She said it feels a lot like a flu shot, in that it hurts to get and stays sore for a while, and she had been stressing about giving it all night.

So, with an iced leg and two nurses holding down her sleeping body, Averi got her shot.  Did she scream?  No. Did she cry?  No.  Did she fuss and then roll over on her side, put her thumb in her mouth, and go back to sleep?  YES!  It was a miracle.

After that we were ready to go, except for that nagging feeling that something was wrong with her throat.  I'm hoping it's just sore from being intubated, but she keeps waking herself up and crying when she coughs and gagging on everything she eats.  I had to fish a tinny piece of fruit out of her mouth yesterday after she gagged on it several times and almost threw up.

When I asked the doctor to look at her throat before she went home, just so I wouldn't have to worry about it at home, he told the nurse that he might want to keep her another night.  That's what I get for being cautious.  Luckily, her fellow came in, looked down her throat, and said that it was red but not infected and we could still go home.

So, by the end of today we found ourselves all at home together as a family...until Tuesday anyways.  The girls and I snuggled up to read books and Averi did some texting.
It was wonderful.  Thank goodness for happy moments!

Wednesday, December 1, 2010

Feeling Yuck

Let me begin by saying that I forgot to take any pictures today, so I risked waking my sweet baby to take this picture for you:
Today was a long day.  Apparently there is no one week waiting period like last time before Averi starts feeling yuck.  She wasn't horrible, but you could definitely tell she didn't feel well because she kept whimpering and didn't even want to cuddle.  She even feels warm to me but doesn't have a temperature.

When I told the doctor about it he said, "Yeah, the meds we are giving her are very concentrated and can cause flu-like symptoms."  Oh, so now you have decided to tell me this bit of unimportant information?  He did say that it would go away about 24 hours after the meds are complete.  Come on Friday!

I'm a little bit concerned about Averi's throat.  She is spoon feeding just fine but when I tried to feed her with the honey bear it was a battle.  She cried and turned away and wouldn't take any consecutive swallows.  She also gagged really bad on a small piece of fruit I gave her.  I think her throat is either really sore from being intubated so much recently or maybe some damage was done.

In good news, the discharge nurse came in today and said that we might get to go home tomorrow and stay there for a few days until it's time for next week's session (after which we will be staying here until her counts come back up again).  We will have to wait and see how she is feeling.  Hopefully things will work out and we can be together for the weekend.

Cycle 2 Begins...Finally

I'm assuming the bone marrow results were good because they started Averi's cycle 2 chemo this afternoon.  This cycle is a bit different, consisting of four 3 hour sessions every 12 hours (did you follow that?).

Averi did really well with the chemo today, but we will wait and see how she is doing tomorrow after there is more of it in her system.  Apparently this is a really concentrated version of Cyterabine, one of the drugs she gets during the other cycles, so this is going to be "the hard cycle."  Yipee!

Her least favorite part of this cycle is having to get eye drops every 6 hours to prevent her eyes from burning or being damaged.  Her beautiful almond eyes are small to begin with but when she squeezes them shut there is no getting in.  Oddly enough, I had more than one nurse tell me that giving eye drops is their least favorite thing to do (Really?  because I thought stabbing someone with a large needle would suck).

Today was also somewhat entertaining because the nurses had to do tons of blood draws.  As part of the study that Averi is taking part in, they needed blood work 8 times, at different stages during the therapy.  Thank goodness for central lines and not having to be poked that many times (as long as it doesn't get infected!).

Other than that, Averi is doing awesome and eating like a pro because the steroid she's on for her breathing makes her hungry.  I think I've said this before, but it would be wonderful if she could permanently be put on steroids.  Oh well, I'll take never coming back to the hospital if that's the alternative. :)

(Dan brought the camera tonight so I promise lots of pictures for tomorrow.)

Tuesday, November 30, 2010

To the OR Again

Being home for Thanksgiving was nerve racking but wonderful.  Everyone was really good about sanitizing.  Of course I somehow ended up being sick and having to wear a mask the whole time but at least we were all together.  I also enjoyed having a break from posting, or more having a break from having a reason to post.  Despite my jumping at every cough, Averi did just fine and only threw up once (while still wearing her bib).

Now we are back in the thick of things and I need to get my game face back on.  We got up dark and early this morning to be admitted to the OR.  After a short wait (it would almost feel weird if we didn't have to wait) I gave Averi a kiss and once again put her life in a stranger's hands.

First, the surgeon put in a new broviac.  It had to be placed on the right side this time since there is now permanent scarring from having the previous broviac on the left side.  He told me he would make the exit spot on her chest parallel to the other one but they are super lopsided and would drive me crazy if they were on me.  Now Averi not only has two sets of nipples, they don't even match up.

After the surgeon was done, another bone marrow biopsy was performed.  Everything went great.  The anesthesiologist even gave her a steroid to help with her post-op croup and she came out of recovery sitting up and playing.  It was amazing!  (In case you are wondering, I spent all of my worries today on her care in the PACU, where that idiot nurse gave her meds without cleaning her line first.  Luckily it turned out okay.)

We spent the rest of the day cuddling and napping.  Being the crappy mother that I am, I left the camera at home, but I promise she is still super cute.  Hopefully the results of her biopsy will come back tomorrow and she can finally get started on Cycle 2.  Is it weird that I'm happy we are on the oncology floor?

Thursday, November 25, 2010

Home Sweet Home - Part 2

After living my present life, I'm not so sure amusement parks will ever have the same lure they once did.  I use to LOVE roller coasters, but that may be changing in the near future.

Last night, I left with my sister-in-law to run to the store while my mom stayed with Averi at the hospital.  When we returned, my mom informed me that she couldn't leave the room because Averi had just thrown up a few times.  We quickly made our way back to the room to find Averi making sure that no part of her dinner was left in her stomach.

She had been off of antibiotics for exactly 23.5 hours and her heart rate was very high.  The nurse, who was actually on top of things this time (I think Averi's file is starting to scare some common sense into people), immediately called the doctor and took blood cultures.  I was told the antibiotics must not have been strong enough to completely kill off the bacteria and she would be started on another stronger round...aka she wouldn't be going home in the morning, or any time soon.

By the time the doctor arrived, Averi was blowing raspberries and looking around as if nothing had happened.    They decided to hold off on the antibiotics since she wasn't showing all the signs of sepsis, and keep an eye on her during the night.  I jumped at every cough for the rest of the night, but it was apparently for no reason at all because Averi was completely fine.

This morning I fed her a really high calorie, low volume breakfast and she managed to keep everything down.  It was decided that she was healthy enough to still go home for Thanksgiving (with one more thing for me to worry about).
(Averi was given this hand-made sweater, hat, and booties when she was in the PICU.  Cute, huh?)

Right before lunch, the doctor showed up to take out Averi's PICC line.  After telling me that it would be used for a couple of months, it was explained that they don't like to send kiddos home with PICC lines.  They also really don't like the PICC sight, since it is very close to her diaper and the dressing has already had to be changed several times after explosive poo episodes.  Needless to say, it was taken out and then I really started stressing about her staying healthy since she no longer has an easy way to administer medicine.

After feeding her another meal, I wrapped my head around the fact that she was indeed coming home, finished packing up our stuff, and we headed out.  If we have to come back before Monday I may just call it quits - whatever that means.
(Someone try to tell me she doesn't look like a girly Boduh.)

Tuesday, November 23, 2010

I Think That's What I Wanted

I knew I shouldn't have gotten my hopes up, but I just couldn't help it.  Averi's doctors came by today and finally informed us what the new game plan is.  Let's just say that it didn't involve Averi going to the OR today, or any time this week.

Today is the last day of Averi's extended antibiotics and they want to take cultures once the antibiotics have worn off just to make sure that everything is alright.  Apparently they have to wait 24 hours for them to completely leave her body.  Once the cultures are taken we have to wait another 48 hours for the results.  All of this has to take place before she can go in for her biopsy.

So the new plan is wait until Wednesday morning to take non-antibiotic cultures and then send Averi home while they wait for the results.  Then we can bring her back in next Monday for the biopsy and start chemo on Tuesday.  That means she will be home for Thanksgiving...which is what I wanted, right?

My whole family is coming this week, which I'm very excited about, but I'd be lying if I said it didn't make me a little nervous to have Averi at home with all those people.  I am now a hot mess when it comes to germs and I wonder if that will ever wear off.  I miss the days of sucking the lint off a pacifier that fell on the ground and putting it back in the baby's mouth.

I am also frustrated with the fact that once upon a time we were hopeful that Averi would be home for Thanksgiving because she would be done with cycle 2.  We haven't even started cycle 2.  I guess I should be grateful that I'm getting what I wanted (Averi home for a holiday) and not focus on the major delays that stand in our way.

Either way, now that I have once again set up camp in Averi's room, we will be leaving in 2 days for a short break before coming back for a longer stretch.

Sunday, November 21, 2010

Weekend Done Right

Since coming back up to J5, the weekend has been just that, the weekend.  Speech came by Friday morning to make sure that it was alright for Averi to start eating orally again.  Since then she has been eating baby food and drinking thickened liquid from a straw.  I think she actually missed eating, which is pretty exciting.

PT also stopped by and played with Averi for a little while.  She is stable enough to sit unassisted again, now that her meds aren't fogging her brain, and she is loving just being able to play and cuddle.  Dan and the girls even enjoyed a movie together.  (I'll let you guess which 2 of the 3 had their eyes glass over while the tv was on =P)
Anesthesia came by in the afternoon to listen to Averi's lungs and said that it would be fine to intubate her for the biopsy.  Now we just have to get the OK from her doctor and then wait for a spot to open up in the OR this next week.  I know it won't happen Monday but I'm hoping anyways, I can't help it.

Kaili has been beside herself since she found out that she could come play with Averi again.  My sister-in-law, Cherish, and her 13 month old, Alaina, have been here for the last 2 weeks helping us out and it is so much fun to see Averi interacting with everyone.
Averi is still showing a few symptoms from her visit in the PICU but is doing great.  She is eating all 4 meals each day and trying to relearn how to put herself to sleep.  She is still making lots of big explosive poopie messes, cuddling, and sucking her thumb until it looks like it might fall off.
We are so thankful for all the prayers that have been sent our way and that Averi is making progress.  I saw her Oncologist in the hall the other day and he told me that Averi has had the bumpiest road of all the kids that he has treated with the same condition as her.  That's our Averi - keeping it real.  Hopefully we can get back on track with her treatments soon and move on the bigger and brighter things!

Thursday, November 18, 2010

Good-bye PICU

I woke up this morning to learn that Averi's cultures came back negative, she's keeping her oxygen levels up all by herself, and she's being discharged from the PICU!  It was a great way to wake up.  Of course we didn't actually get to leave until late in the afternoon but it still happened.  After 13 long days, good riddance and may we never see you again!

It was nice getting back to J5 (the oncology floor) until we learned that there are still a few hoops to jump through before cycle 2 can start.  They decided to continue her antibiotics for 4 more days in hopes of thoroughly getting rid of any bacteria.  Once those are done, more cultures will be run with no antibiotics in her system to make doubly sure that she is clean (another two days).  Finally, we have to get an OK from anesthesia to intubate her again so soon after being on the vent so that they can do the bone marrow biopsy that is required before starting cycle 2.

I'm thinking it will be a while before we actually get around to the chemo and my hopes of Averi being home for Thanksgiving are pretty much dead.  At least I can look out a window while I pout.

Wednesday, November 17, 2010

Chin Strap

After they finally got the CPAP strapped to Averi's face Monday night, the alarms kept going off saying that there was a leak in the pressure.  All it meant was that her mouth was hanging open and letting the forced air out instead of making it go down into her lungs.  This was quickly fixed by putting a chin strap on to keep her mouth closed.  Luckily it wasn't so tight that she couldn't get her beloved thumb in.  She looked so silly I couldn't help but giggle.
Nothing really happened yesterday, other than waiting for culture results, beating on Averi's chest, and giving antibiotics and diuretics.  OT and PT both stopped by but couldn't stay because Averi was once again sedated to the point of just sleeping all the time.

At one point the nurse mentioned to another nurse that the doctor wanted someone to hold Averi in hopes that a change in position would help dislodge the junk in her lungs.  I had been letting her sleep in her bed since they were doing so much stuff to her and was not too happy that the nurse hadn't bothered to tell me.  Um...hello, I'm the mom; I will gladly hold my daughter that I haven't been able to hold for the last week.  Give her to me NOW!
(This, of course, ended with her pooping on me twice and soaking the front of my pants.  What can I say?)
By the end of the day, the sedative had worn off a little and I was able to get her to shake her rattle a few times.  She had gotten more stable, with no fever and a normal blood pressure, so the scare of another infection died down a little.
This morning things were looking a lot better.  Averi was much more awake and kept holding onto the top of her CPAP like she was worried it might come off or something.  They turned down the pressure on her CPAP and when she handled it just fine they took it off completely later in the afternoon.
Her oxygen levels stayed high until she fell asleep (in my arms because I am now holding her all the time and making the nurses work around me, thank you very much) and they had to put the nasal cannula back on her.  This only lasted until she woke up and ripped it off multiple times and then kept her levels up all on her own.  I guess she finally got tired of having all that crap on her face. :)

The only problem with having the CPAP off was that her sedation meds were turned off as well and she went right back into jittery withdraws.  Hopefully it will subside in a few days.

OT was finally able to come this afternoon and do a few things with Averi.  She's not stable enough to sit up yet but she did draw a few scribbles while lying down and shake the heck out of a squishy ball.  I'd call that progress after not being able to move for over a week.

Monday, November 15, 2010

I Hate Fluid!

Last night didn't go quite as planned.  Averi was up well into the night crying and no amount of cuddling or Tylenol would console her.  She was maxed out on her medications but the withdraws were really bugging her.  She finally fell asleep, but only in spurts, and didn't get into a deep sleep until this morning.

When the doctor came by to tell me that her white counts had gone up more than 50% since yesterday my cancer fighting brain was ecstatic.  This quickly died when she explained that she was worried that Averi was trying to fight off another infection and wanted to keep her here for another day to keep an eye on her.  Nice!

Averi was fine until the afternoon when her oxygen levels went down into the 60's and they had to give her blow-by to bring them back up.  As the day progressed, her heart rate started climbing and her lungs sounded worse.  A chest x-ray showed a significant increase in fluid on her right lung and she was put on CPAP to help keep her oxygen levels up and hopefully force open that right side.  Cultures were taken again and she was started on another round of antibiotics as well as the diuretics.
She kept fighting them over putting the CPAP on and they had to give her quite a bit of sedation just to get it on.  The picture was during one of the breaks while they were waiting for the meds to kick in.  She was finally happy for just a few minutes.  They pound on her chest every 2 hours now in hopes of getting some of the crud out of her lungs.  

This means she will be here at least 2 more days until the results come back from the cultures.  If someone could explain to me exactly how a person gets an infection while in isolation in the PICU, I am all ears.

Sunday, November 14, 2010

Looking Good

I went to start this post and realized that it has been almost a week since the last time I wrote.  I didn't mean to leave you hanging, but honestly, days just blur together when you are in a room with no windows and lots of beeping machines.  I'm so sorry.

Averi has slowly been making improvements.  She was much sicker this time so her recovery is taking longer but it is still happening.  On Wednesday the diuretics kicked in and she lost 2 pounds of fluids in one day.  Her face looked tons better (and more like Averi) but her hands and feet were still pretty puffy.  The rest of the fluid will take a while to get rid of.

Since her fluid was going down and they could turn down the pressure on her vent, they also took her off the paralytic.  She was still sedated so she wasn't awake very much, but when she was she could actually open her eyes and look around.  Being off the paralytic also meant that she was back in restraints to keep her from tugging on the tube.  I guess you win some and lose some.

The end of the week consisted of slowly weaning the vent until she was able to breath over it.  On Friday night she decided that she was done with the whole ordeal and tried to extubate herself.  We saw the tube come up and lay sideways in her mouth before miraculously sliding back down her throat.  After an x-ray was done to make sure it was in the right place, the tube was re-taped.  They even started giving her feeds through her G-tube and were able to turn off the IV nutrition.

Saturday came and Averi was doing so well that they decided to extubate her.  I assumed she would have to go right onto CPAP again but she did surprisingly well and only had a nasal cannula put on.  Being extubated came with its ups and downs.  The up - we finally got to hold her for the first time in a week!  Dan was there when it happened so he got to hold her first (I'm not bitter).
The down side is that she was on the sedation medications long enough that she went into withdraws without them.  They put her on another less potent version but she was really jittery and fussy.  That's my little girl - the druggie!

So by the end of the day Saturday she was a little more awake and mobile, although still very tired, and the only cords she had attached to her were her G-tube, oxygen, and heart rate and oxygen monitors.  It was a good day.

Today was a pretty mellow day.  Other than going through withdraws and wanting to be held, which we can do now (I know I already mentioned that but I'm pretty pumped about it), they just continued to wean her meds and oxygen.  We were even given the hope that she might be discharged from the PICU and go back upstairs tomorrow.  Averi has been here over a week now and we are so ready to see sunshine again and get on with this chemo.

Tuesday, November 9, 2010

PICC

I have never seen a person as swollen as Averi.  They weighed her yesterday and she's gone from 18 to 25 pounds since she's been admitted.  That's almost a 40% weight gain, and it is all fluid.

Yesterday was a little crazy.  The final results came back on the broviac cultures (proving that she was indeed growing the same bacteria as before and it had set up shop in her tubes) and Averi went down to Interventional Radiology at 1:00pm to have her PICC line put in.

The 30 minute procedure took over an hour because she is SO swollen.  She's little to begin with, she has smaller veins, and she's being given medications to improve her blood pressure which in turn shrink her vessels.  The pressure was really on because she is getting so many medications that she has to have a central line with a double port (also very hard to do on babies).  Luckily, we had a little miracle and they were able to not only put the line in, but put in a double port!
The PICC had to be put in her leg, instead of her arm, to save the upper veins for the next broviac (which will have to be put in on the right side instead of the left).  Apparently every time you put in an IV or central line, it causes scarring and can make that vein unusable again.  I'm pretty sure Averi will just be one big scar by the time she's done with all this.

We were supposed to go down to the OR shortly after having the PICC put in and switching all the meds over to the new line, but that wasn't the case.  We waited for the rest of the afternoon, while putting off meds that would help with her swelling so that they wouldn't interfere with the anesthesia, and never made it to the OR.

Around midnight, her oxygen saturation went way down and they had to bag her until she slowly brought it back up.  She had so much fluid in and around her lungs that they weren't staying open and the pressure of the vent had to be largely increased.  I guess this finally proved to the doctors how much she needed the lasix (the drug that makes you pee off the fluid) and they gave her a dose.
(I can't close her hand any more than this because her fingers are so swollen.)

Not even an hour after she had finally calmed down, I was woken up to find the surgeon and 2 OR nurses in our room.  Apparently they just showed up and decided to remove the broviac bedside...at 1:30 in the morning.  They set out their sterile field and got to work removing the stitches and pulling out the line.  They didn't even close it up, explaining that they didn't want to seal in the infection and that the body would close it on it's own.  Had we known that they were going to do it bedside, we could have been giving her lasix all day long...I love good communication!

Gratefully, once the broviac was out they started Averi on a continuous lasix drip and she started peeing.  Unfortunately, the lasix isn't compatible with some of the other medications she is getting and has to be administered through the IV on her foot.  Since that IV and both ports on her PICC are being used, another IV had to be put in.  I woke up this morning to find an IV in her head.  I guess that was the only vein they could find that wasn't covered by 5 inches of fluid.
The rest of the day went pretty smoothly and Averi continued to pee and then pee some more.  Tonight you can actually open her eyelids a little bit and her tongue isn't so swollen that you can see every single taste bud poking out of it.  I know we still have a ways to go, but at least she is working on improving.

Monday, November 8, 2010

Life Support

Averi received a couple of platelet transfusions and more fluids which helped her vitals return to normal and her acidity level is up to 7.32, a drastic improvement from yesterday.  They also started her on lasix to hopefully help drain most of the excess fluid from all over her body.  I had to hold her up this afternoon while they changed her bedding and she was definitely heavier with all the excess fluid.  She is so pumped full of fluid, in fact, that her tongue won't even stay in her mouth and you couldn't pry open her eyes if you wanted to.
(She's so swollen that Tiffany said she thought she walked into the wrong room the first time she saw her.)

The preliminary results came back from the lab and they found three different bacteria growing from the cultures they took from her broviac.  They found “pseudo-like” gram negative rods (which my bet will be Pseudomonas aeruginosa), a non-lactose fermenting gram negative bacteria, and probable Enterococcus gram positive bacteria.  That would explain why she is sicker this time and why she is taking longer to recover than the last two visits to the PICU.

The bacteria only grew from the cultures taken from her broviac; her arterial line was clear.  That confirms what the physicians suspected and Averi will have her broviac taken out tomorrow.  They will put in a temporary PICC line until the infection clears up.  Then they will most likely insert another broviac so we can continue her chemotherapy.

Averi is a fighter.  That is a known fact.  In fact, she is such a fighter the physicians were concerned she was expending too much energy combating the breathing tube instead of letting it help her.  The decision was made to administer Vecuronium.  For those who don’t know, Vecuronium is a muscle relaxant, or more commonly referred to as a paralytic agent.  They pumped her full of pain medication and sedatives and then she was medically paralyzed, which means she can’t even breathe on her own.  Poor Averi will not be responsive for several days until the infection has been cleared from her body.

That said, a harsh reality hit me today.  My daughter is now completely reliant on the machines to keep her alive. 
Daddy’s little girl is on life support.

I pray constantly that my little girl will pull through.  She is such a light in our family and a joy to have around.  It pains me to see her suffer.  It pains me to think there is nothing I can do to help her.  I love her.  Tiffany loves her.  Kaili loves her.  And we pray she will get better and come home soon.  She is our life support.

Who doesn't love someone like Averi when she has such a contagious smile? 
~ Dan

Sunday, November 7, 2010

PICU - Take Three

It has been said, “third time’s the charm…”

This is not very charming.  Averi is in the PICU for the third time in the last 4 weeks, her body again falling victim to septic shock.  Each visit has been a little different, but this one has definitely hit her the worst.

First, they found gram negative rods in her bloodstream again.  We won’t know until tomorrow what specific type it is, but if it’s Pseudomonas aeruginosa like the last time, then she will have to get her broviac lines replaced.  The consensus is the bacteria may have somehow set up shop in Averi’s broviac and survived while we were administering antibiotics over the past 10 days.  As soon as we stopped, the bacteria re-infiltrated her bloodstream.  She is currently on a concoction of antibiotics to fight the invaders.  Not very charming of the bacteria to do that to Averi.

Second, Averi’s blood pressure and heart rate have really been difficult to manage this time around.  During the first two occurrences, once they pushed some saline into her blood vessels her heart rate decreased and her blood pressure came back up.  This time, after pushing four or five saline boluses and one packed red blood cell bolus her blood pressure actually went down – at one point her blood pressure was about 48/20 (her normal is about 100/60).  The ICU physician said he was concerned nothing was working and they had to sedate and intubate Averi so she wouldn’t have to work so hard breathing.  Breathing tubes are not charming at all.  They’ve played with her medications most of the day to get her stats to normal levels and she has done pretty well thus far.
(A solemn sight seeing your charming, little daughter hooked up to so many machines and pumps.)

Third, Averi’s pH level in her blood was a little acidotic.  The normal pH of blood is between 7.35 and 7.45.  Averi’s pH level was 7.18 this morning, which can lead to a host of serious issues.  They have been giving her some bicarbonates to offset the acidosis and her pH level has risen to 7.27.  They continue to monitor her pH levels and hope to have that under control by tomorrow.  Not so charming.

Fourth, Averi’s blood sugar levels were close to 400 this morning.  They had to start her on an insulin drip to bring it down.  When I heard it my first thought was, “Oh please no!  We don’t need another diagnosis.  She can’t have diabetes.  She has too many other issues to deal with.”  After discussions with the physicians they quickly pacified my fears and assured me Averi was not diabetic.  They were just giving her some dextrose to help supplement her cells and tissues, and that there were just some “leftovers” that made her blood sugar spike.  Her most recent blood sugar was at 141, so thankfully we’re pretty good there.
(Try and untangle that mess of tubes and wires.)

All in all it’s been a long day.  Averi has received one-to-one nursing care and the poor nurses have had their hands full.  Overall, Averi has doubled the medications she’s received since her last stint in the PICU.  Thus far, here is the list of medications she’s been given (in no particular order): Cefepime, Vancomycin, Tobramycin, Ceftriaxone, Fluconazole, Pottasium Chloride, Calcium Chloride, Sodium Bicarbonate, Insulin, Hydrocortisone, Protonix, Albumin, Atropine, Acetometaphine, Motrin, Precedex, Fentanyl, Versed, Solumedrol, Milrinone, Epinephrine, Vecuronium, and packed red blood cells.  Needless to say, this has not been a charming visit.
(They've given her so much fluid that Averi's face and body look swollen.)

We are grateful for all the love and support we’ve received and thank each and every one of you for your prayers and thoughts.  Despite this less than charming experience, the care Averi has received has been exceptional thus far.  We will continue to have faith and look forward to the day that Averi will have her charm back.  ~ Dan

Ambulance Ride

I have never seen a child get sick faster than Averi.  She spent the entire morning hanging out, playing with toys, and laughing and smiling.  At lunch time I flushed her broviac lines (we have to heprinize them every day) and Dan fed her 2 jars of baby food with no complaints.

I kid you not, within minutes she went from happy to inconsolable.  At 1:00 she wouldn't let Dan put her down and kept fidgeting.  That's when we noticed that her skin was mottled and her arms and legs felt cold.  We took her temperature but it was normal so Dan continued to rock her and try to keep her warm.

Then the projectile vomiting started.  Once we changed Averi's clothes, I called the Oncologist on call.  After explaining the situation, she insisted that we call an ambulance immediately.  Dan went to change his shirt, believing that he could get to the hospital faster than it would take the ambulance, and was demanded back into the room as I told the doctor to hold on because my face was being puked on.  Averi continued to throw up everywhere and I hung up and called 911.

By 2:10, Dan was climbing into the back of an ambulance with Averi to be taken to the hospital.  She did fine on the ride but picked up with the vomiting as soon as she was out of the ambulance.  Once in the Emergency Department's Critical Care Unit they took blood cultures, pushed several boluses of saline into her line, and put her on CPAP to help with her labored breathing.

As soon as she was "stable", they moved her up to the PICU.

(Averi getting ready for the transfer from the ED to the PICU...
yes, she's sucking her thumb while on CPAP.)

Friday, November 5, 2010

Wrong Direction

The home nurse came back yesterday to change Averi's broviac dressing (it has to be changed once a week) and draw some blood to make sure that Averi could go in for the biopsy on Monday.  Once again, things are not doing what they are supposed to be doing.

Averi's doctor called us today to let us know that her neutrophils (which were 630 on Monday and have to be 1,000 to start the next cycle) are now at 503.  Tell me if I'm wrong, but isn't that the wrong direction?  That is even lower than it was when she was discharged last week.  Apparently it's nothing to be concerned about but it sure doesn't make me feel better, that's for sure.

So, we have to go in to the hospital early Monday morning to have her blood work done again (thank goodness for her broviac) and if her levels aren't high enough then they will send us home and forget about doing the biopsy.  I'm assuming that if they aren't high enough, she will have to go back in every couple of days to have her blood rechecked until it is safe to move on with cycle 2.  I'm not even pretending like I think her levels will be fine by Monday.

Until then, we will continue to enjoy our time at home and try not to think about the many months at the hospital looming in our future.

Wednesday, November 3, 2010

First Haircut

Averi's hair is getting really thin.  She totally has a 'new baby bald spot' on the back of her head since her visit to the PICU and having the CPAP strapped to her noggin.

Normally you just ignore the long wispy baby hairs that didn't fall out when the new hair started growing in until they are long enough not to matter.  However, Averi's have become very noticeable as of late and they finally drove me over the edge.  I got out the clippers!

It's sad that she got her first haircut so young, but the truth is that soon it will all be gone anyways so it might as well look decent.  Here's the BEFORE (note the side wispies):
I waited until Dan came home so I could have some help distracting her.  We covered her with the cape and she thought it was hysterical (so did I).  She kept kicking it from underneath and giggling.
I was going to just cut her hair with scissors but her hair was so thin I couldn't figure out how to do it so I just got out the clippers.  Surprisingly, she held really still if we sang to her.  I even did a little blending on the sides.
AFTER (no more wispies!):
Okay, the truth is that she looks like a boy - but less like a cancer patient (I'm not sure which is worse).  I wish I'd left the top a little longer. Apparently the largest guard wasn't long enough but her hair was too thin to hold and cut with scissors. :)  Oh well, she's still adorable and maybe this will help me actually look forward to her hair being totally gone. =P

Tuesday, November 2, 2010

18 Months Old!

Yesterday, Averi turned 18 months old!  That's a whole year and a half.  I can't believe it.
Here are some of her present accomplishments:
  • waving
  • giving lots and lots of kisses
  • rubbing her hands together as if she has an evil plan and tapping toys together (she is so close to clapping it's not funny)
  • she has all 4 molars and 2 top teeth
  • sitting really well and rotating around on her bum (I often find her facing away from her toys)
  • occasionally leaning forward on her hands
  • dancing aka bouncing her body up and down
  • take toys in and out of a container
  • eating small pieces of fruit (normal and dried) and doing awesome with baby purees
  • drinking from a straw with thickened liquids
  • babbling, she's really good at W sounds (the only baby I know who does that)
  • blowing raspberries and popping her lips
  • sucking her thumb till it blisters on the end
  • wearing 9 month clothes
  • smiling and laughing like crazy!
We are so proud of Averi and all that she is accomplishing!