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


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!

Monday, November 1, 2010

A Break

We headed to the Hematology/Oncology Clinic today to have Averi's blood work done and to find out when she needs to return for Cycle #2.  Kaili tagged along and hung out at the Sibling Clubhouse.
(This is how cheap people with tiny kids turn a single stroller into a double stroller.)
The appointment went really well.  Averi sat on the exam table and shredded the paper while I talked with the doctors.  Dr. Pillay, Averi's Oncology fellow, mentioned that she's never seen Averi so excited.  Yeah, that's right, a little dose of home goes a long way!

The visit didn't go how I thought it would, but it wasn't bad, just surprising.  The first surprise was when I asked the NP how this treatment will affect Averi since the chemo is administered on days 1 and 2 and 8 and 9, instead of just four straight days.  She said that usually, if everything goes well, the chemo is given the first two days and then the patient can go home for 5 days and return for the second dose since that's about the time the blood counts start going down anyways.  I realize that's usual and Averi doesn't know what that word means, but there's at least a chance.

She then reminded me (I forgot, but probably on purpose) that Averi needs another bone marrow biopsy before they can start Cycle #2.  Seriously, I am so sick of her going to the OR and returning with issues.  I am not past putting a sign on her broviac that says, "please clean with alchol before using," and one on her G-tube that says, "Do Not Touch!"  Luckily, if this one comes back with good results, she won't need another one for several months.  Let's hope for good.

The last thing the NP explained was that they wanted to wait until Monday to have Averi come back in so that she could get a little break to finish recovering from the PICU visit.  I asked her if there was any way we could start on Thursday (the official day 28) or Friday, not because we love the hospital, but just in hopes of her being home by Thanksgiving (which is 3 weeks from Thurs).  She said she understood our concern but that it depended on Averi's blood work results and she would give me call when they returned.

The good news was when she told me that sometimes, sometimes, they let patients go home for a little while during the day for special occasions, like holidays.  It only happens if their counts are starting to come up and they are close to going home but not quite ready.  How cool would it be if she could get a field trip from the hospital while my family is in town for Thanksgiving or especially for Christmas?

Later this afternoon, she called to let me know that Averi's neutrophil counts are at about 630 and they have to be at 1,000 to start the next cycle, which isn't very likely by this week.  I definitely don't want to rush things and make Averi sicker than she has to be, so we are going to wait until Monday to have her admitted.

The tentative plan is to have more blood work done on Thursday to check her neutrophils and then have her admitted on Monday for her biopsy.  Her chemo will start either Tuesday or Wednesday, depending on when the results get back, and then hopefully we can come home for a few days at the end of the week before she gets the second dose.  Until then, we get the rest of the week off to hang out at home and spend more time as a family!