Super Averi

This year's Halloween costume wasn't just a costume...it was a fact.

I've never seen someone endure so much and still give a smile and a kiss the way Averi does.  Keep on fighting Averi, you truly are Super!

IV Infusions

I thought keeping up with Averi's feeds, making formula, priming her pump, cleaning up her leaky G-tube, counting calories, and convincing her to eat was time consuming...and then I learned how to do IV infusions.  They are not only time consuming and necessary at inconvenient times, they are extremely boring!

We learned this the hard way at midnight last night as we did our first infusion.  It took over 30 minutes to give her two antibiotics totaling maybe 11 mls.  You have to flush her line before and after each drug and you can only push in 1/2 a milliliter every minute.

(The 30 minute setup - it even requires an instruction card.)

Not only are you completely paranoid the entire time that you're not going to get the cap clean enough to keep her from getting sick again, but you can't do anything but sit and watch a clock and slowly push in the meds and change out the syringes- three times a day.

The truth of the situation, however, is that it is worth every minute that we get to spend as a family together and healthy at home!

Other than trying to figure out the new feeding schedules and medications, we did nothing but hang out today and occasionally go through our large pile of stuff we brought home from the hospital.  Most of it remained in the pile to return with us next week.

You better believe we are not going to go anywhere this next week and we are going to savor it.

Home Sweet Home after Cycle 1

After 27 days at the hospital, Averi came HOME today!!!

When the resident/intern/doctor who does all the dirty work but can't make any final decisions came by this morning, he said that Averi's white counts had gone down a little so he didn't know if we would still get to go home.  Lucky for us, her primary doctor isn't very conservative and later told me during rounds that her white counts were about the same.  (I'm still not sure if that makes me happy or scared.)

He also said that her blood work didn't look right yesterday and he had it redrawn in the afternoon only to have it come back exactly the same.  Apparently her platelets are now normal (in the 130's after she's been getting transfusions for being in the 20's), and her neutrophils are over 500 (the limit for her to go home).

He asked if I was okay adjusting Averi's feeds at home (I'm pretty sure I've been doing that her entire life) and how I felt about giving her antibiotics through her broviac port.  I'm not gunna lie, it was a little scary knowing I was going to be given direct access to the same port that made her septic, but I'm pretty much willing to do anything to get her home.  So I said we could handle it.

Once it was official that she was going home today, I started taking loads to the car.  Just when we were about ready to go, the nurse informed me that the home nurse who was supposed to meet us at home to teach us about IV infusions had bailed on us.  We had to wait a couple more hours until another home nurse was found, and then we were finally discharged!

It was so weird leaving the hospital with Averi and driving home.  When we got there a man was waiting with a delivery of her antibiotics and the nurse arrived 15 minutes later.  Little did we know that there was so much paper work involved when using a home nurse, and she stayed for over 2 hours.  It made for a very long day!

We are really looking forward to a nice relaxing day tomorrow...at home! :)

Back, but Hopefully Not for Long

The nurse woke me up at 6:30 yesterday morning to tell me that Averi was coming back upstairs to the oncology floor.  I have no idea why they picked that time but I was very excited that she was done with the PICU after being there for 5 nights.  Her oxygen levels remained high through out the night and she was tolerating her continuous feeds.

I don't know if it was being sedated or just that she was sicker this time (or both) but her recovery is taking a lot longer.  While she is looking much better, she's still a little pale and doesn't want to play or do much.  All of the therapies had missed her while she was downstairs and decided that her first day back should be loaded with lots of visits.  Averi wanted nothing to do with them.

PT consisted of screaming and no cooperation.  The only benefit she got from it was when the screaming made her couch up some of the congestion in her lungs from being intubated.  When Speech showed up I told them that she wasn't getting out of bed again and they simply blew bubbles at her while she lay there not moving.

Thankfully, each day is a step in the right direction and Averi was even better today.  She actually sat up in bed, played with her toys, and smiled.

When the doctors came by to do rounds, Dr. Olshefski, her primary oncologist, announced that Averi's neutrophil counts (the white blood cells that fight bacteria and have to be up to 500 before she can go home) have finally started to come up...from 0 to 240 in the last two days!  That means that she will be able to go home soon, maybe even tomorrow.  I'm trying really hard not to get my hopes up since she just came back from the PICU yesterday, but I did take a load of stuff home tonight. :)

(Please, get me out of this prison!)

The audiologist also stopped by today to drop off the trial hearing aid.  It's super cool and Averi loves it (note the sarcasm!).  It squeals whenever something touches it so I have to take it off anytime she lies down, including diaper changes and nurse care.  When the audiologist came back this afternoon to get it I told her I had no idea if it was doing anything to help.  She said it's easier to tell a difference at home when there are more distractions and she let us keep it for a week since we might be going home soon.  In the mean time, I will try not to let Averi ruin it since it has a steep $7,000 replacement fee.

Later in the day, while I was holding Averi, I noticed that her clothes were all wet.  Upon further examination, I realized that her entire feed was running down the front of her stomach.  Apparently her G-tube site is so irritated and wet that it has stretched out and is leaking.  Surgery came to look at it and declared that no surgery was required and that it didn't seem to be hurting her.  (Wow, they are helpful!)

Brenda, the wound care specialist, came by later to look at it and decided to take the Mickey out for a little while to allow the hole to close up a little.  She taped a dressing onto Averi's stomach, around the site, and then attached a bag to it to catch any drainage.  Finally, someone is doing something!

She said we could keep the dressing on for a week, even if we weren't using the bag, because it will keep the skin dry and clean.  After letting her site rest for a while, we were able to start bolus feeds again.  This always makes me happy because I know Averi has to be hungry and they are more like really eating.

I'm hoping for a very uneventful night so that we can go home as soon as possible!

Elephant Face Again

Yesterday, the doctors told us that they had been weaning Averi off the ventilator all night and the respiratory person would come in the afternoon to remove the tube.  Before they could take out the tube, the sedation medications had to be weaned as well.  This left Averi squirming in her bed all morning.

They finally extubated her around 3:00pm (later than scheduled).  After giving her a breathing treatment to open up her irritated airway, her oxygen still wasn't staying up on it's own.  They tried several different things and eventually put her back on the CPAP.  She was not at all happy about it and it took quite a while for her to calm down.

When she finally did calm down she would sleep for about 15 minutes and then wake up arching her back and flailing her arms and legs.  I asked the doctor if we could up her pain medication and he said she hadn't been on any pain meds since she came down to the PICU.  Seriously?  I quickly fixed that but it still didn't seem to help much.

At least they let me hold her since she was off the ventilator, and that seemed to help a little, but she still had moments of obvious discomfort.  Somehow, she once again managed to get her thumb in her mouth while maneuvering around that elephant nose on her face.  Thank goodness for that thumb (yes, I'm aware that will come back and bite me in the butt).

The wound care specialist also came by and looked at her G-tube site.  She said that it is cellulites and the site needs to be cleaned, have Proshield applied to it to keep any drainage off the skin, and covered with a special gauze that has silver in it which apparently helps with healing.  She was also put on yet another antibiotic to stop the infection at the G-tube site because it will also make her sick.

During the night last night the oxygen levels on the CPAP were weaned in hopes of getting it off today.  When I came in this morning the nurse was taking the CPAP off for a minute to weigh Averi.  The doctors came by doing rounds and saw that Averi was doing fine with the CPAP off and told us to leave it.  They never had to put it back on and she kept her oxygen saturation levels around 98 percent.  Yipee!

With all that breathing stuff off her face and the sedation medications worn off, Averi is a little bit more herself today.  Her eyes have lost their glossiness but she isn't really moving around or wanting to play.  They even started a continuous feed tonight, which is always a good sign.  Hopefully she will continue to get better.

It's Negative, Gram Negative

Time takes on a completely different characteristic when it is spent in an ICU.  You can't use your cell phone, so you have hardly any contact with the outside world.  You sit in a small isolation room with machines beeping and the lights always on and wait for time to pass until you realize that the day is almost over.

Today, Averi sat in bed with her arms in restraints, a tube down her throat, and her eyes glossed over.  She had moments when she was slightly awake, but even those were broken up by her eyes falling shut.  Sometimes she would try to cry, but no sound ever came out even though her face was scrunched up and tears came out of her eyes.  It was officially the most depressing thing I have ever seen.

(Dan got to hold her for a few minutes while they changed her bedding.)

The doctor came in at one point and told us that the results had come back from the cultures taken when Averi spiked a fever.  It was growing a bacteria known broadly as Gram Negative.  We later found out that it's pseudomonas aeruginosa, a bacteria found in the lungs when a person has pneumonia, but hardly ever seen in the blood.  Leave it to Averi to grow bacteria in the wrong places.

While there's no way to prove where this bacteria came from, I have a pretty good idea.  On Thursday when Averi was in the recovery room for her biopsy, the nurse plugged some medicine into her port without cleaning it with alcohol first.  The broviac is a direct line into her heart and the ports should be scrubbed for 15 seconds, wiped, and then allowed to dry for 30 seconds before anything is hooked onto them.  She'd already done it before I could stop her and now I'm beating myself up about it.  Ahhhh!

(Averi has really taken to this doll that a friend recently gave her.  She sits and fiddles with the hair on it until she falls asleep.)

Averi's G-tube site has also gotten really nasty.  It was red after the last time she went to the OR and was just starting to look better until she returned from the biopsy.  Now it is black at the site, red around the site, warm to the touch, and hard when you push on it, which makes her very upset.

Luckily, the nurse took Averi's arms out of the restraints for a little bit while we were in the room and Averi some how managed to get her thumb into her mouth.  She never once tried to pull on the ventilator tube and was perfectly happy just to have her thumb for a while.

Déjà Vu

Dad gets to write this post because he seems to be the one who gets to be at the hospital every time Averi decides to crash.  It was last Friday when Averi’s health took a nose dive and she was transferred down to the Pediatric ICU (PICU).  She quickly improved, was brought back up to the oncology floor, and had a relatively good week.  Friday rolls around and here we go again…

I showed up at Children’s after work.  Tiffany informed me that they had started her oral feeds again and she took 2 ounces really well.  Despite doing well with her feeding, Averi had been grumpy most of the day and she looked tired, so I did what any other father would do.  I took my little girl and held her tight.  Averi loves cuddling, but doing so with her daddy makes her feel even better.  Sorry Tiffany, Averi is a daddy’s girl. J

After Tiffany and Kaili left for the evening, I held Averi some more until she fell asleep.  I was planning on trying to feed her again in the evening, but she was too tired and didn’t want to sit up.  Averi hadn’t thrown up all week, so I wasn’t worried about her crashing due to severe dehydration like last week.  I just thought she was tired, so I let her sleep.

An hour or so later, she woke back up irritated and upset.  I held her again in the recliner and rocked her backed to sleep.  This time I just held her, hoping she would sleep better in her father’s arms than in a hospital bed.  I turned on the t.v. and to my enjoyment, the Texas Rangers were playing in Game 6 of the American League Championship Series for a chance to go to their first World Series ever.  Around the 4^th inning I quietly put Averi back in her bed.  She was so sound asleep, she didn’t move a muscle.  She needed the rest.

I watched the rest of the game in the room so I could keep an eye on Averi, trying desperately to keep quiet.  I’ll tell you, I must have looked stupid whisper-screaming (if there is such a word) while jumping up and down celebrating the Rangers victory over the hated Yankees.  Being from Texas, I grew up watching and cheering for the Rangers, and if you know anything about the team, there hadn’t been much to cheer for in the past.  But I stuck by my Rangers, and all that disappointment washed away with last night’s victory.

That rush of excitement, happiness and joy was short lived.

I was elated when I went to bed just after midnight – my Texas Rangers were going to the World Series and Averi was happily sound asleep.  Just after 2a.m. the nurse woke me up telling me that she had asked the doctor to come in and evaluate Averi as her vitals were a little off.  To be honest, I don’t remember the details much, but I eventually went back to sleep. 

About 3a.m. I was woken up again.  This time the doctor who had evaluated Averi earlier was hovering over me.  It kind of freaked me out.  I sat up and realized there were about 4-5 other people in the room and Averi was being held by the Respiratory Therapist.  What was going on?  The doctor informed me that he had called for the Assessment and Consultation Team (ACT) to come and reevaluate Averi as her temperature was over 103, her respiratory rate was over 60, her heart rate was over 200, and her blood pressure was a little high.  Déjà vu all over again – except her breathing and blood pressure were high this time.

Averi began coughing.  I jumped out of bed and called for a towel, “she’s going to throw up.  Quick, get a towel!”  I kid you not, two seconds after putting a towel over his shoulder Averi threw up all over the Respiratory Therapist.  Luckily most of it was caught by the towel.  We had to use suction to clear her airway as she was having a hard time breathing afterwards.  I took Averi in my arms and tried calming her down.  She felt warm.  When the PICU physicians showed up I had to lay her down so they could evaluate her.

Long story short, they decided she needed to come down to the PICU as soon as possible because she was in sepsis – again.  I do have to note that the response was much quicker this time and she was transferred almost immediately.  Because the nurse and physician on the oncology floor had been monitoring Averi closely that night, they had started her IV sooner, thus preventing her from going into shock this time.  I thank them for their vigilance and quick response.

(And you thought her concoction of meds was crazy last week... 

I don't think they could have fit more pumps onto that pole.)

When we got to the PICU they put Averi on a CPAP machine to blow air into her lungs as she was having difficulty breathing.  Her core temperature strangely enough had gone back down to 99 but her legs and arms were cold – the physicians were concerned about her blood circulation.  Then they proceeded to hook up a tri-port to each of the 2 broviac catheters and then connect them to various machines to give her numerous medications to fight off the infection and fluids for support.  All in all Averi received Cefepime, Tobramycin, Vancomycin, Fluconazole, Hydrocortisone, Epinephrine, Fentanyl, Versed, packed red blood cells, platelets, Potassium Chloride, Calcium Chloride, and Sodium Chloride this morning.

The physicians were worried that Averi was expending too much energy trying to breath (she was fighting the CPAP machine) instead of relaxing so her body could fight the infection in her blood stream.  They decided to sedate her and put in a breathing tube.

(Averi with her breathing tube.  Even in the PICU she looks cute.)

I felt so helpless watching them put a breathing tube in.  Averi’s body was limp as a rag doll.  Her heart rate dropped to below 40 due to a sensitive vagal nerve and her O2 saturation dropped to 80 before they could get the tube in so they had to pull back out and use an ambu bag to get her stats back up.  In round two, they got the breathing tube in and hooked her up to the machine.

Averi woke up a couple of hours later unaware of where she was and what was happening to her.  She was in restraints so she wouldn’t pull on the breathing tube.  Now that everything has slowed down, Averi seems to be doing better - of course I would be feeling better if they gave me some Versed too.  We’ll see how long they keep her in the PICU.  She is a fighter so hopefully she’ll be able to go back to her room on the Oncology floor sooner than later.

Another Biopsy

I keep forgetting to tell you about the progress Averi's teeth are making...big news I know. :)  For a while I thought she was just going to have those 4 molars, which she grinds very well and gives me the willies.  The day she was admitted to the hospital (Oct. 3), her front tooth on the top right finally poked through.  Since then, the front left left one has gotten really close and the one next to it has made an appearance as well.  Maybe one day she will have a beautiful smile like her sister's.

I have a confession to make.  I worry a lot about how Averi looks.  I know a small part of it is just because I'm vain, but before you judge me, hear the other part.  I'm not dumb - I know that as she gets older Averi will be made fun of because she is different (fact: kids are cruel).  This will affect not only Averi but Kaili as well (who I'm sure will both defend her and question why she was given a special sister).  The last thing Averi needs is crooked teeth, crossed eyes, or a big hearing aid strapped to her head to fuel the ridicule.

If I knew I could shelter her from the teasing, her appearance wouldn't worry me so much.  Plus, it seems silly to worry about it right now when she is so small.  Of course, don't get me wrong, I think she is one of the two most beautiful girls in the world and I absolutely love her just the way she is.  If only she could walk around with a banner over her head explaining her story to everyone around her so that they could be informed before they judged.

Anyways, Averi is still holding on like a champ.  On Tuesday, the doctor 'reminded' us that Averi had to have another bone marrow biopsy on day 14 of her treatment.  Somehow we missed that crucial information in the 21 page packet they gave us.  Dan immediately looked it up - the doctor was right and day 14 was yesterday.

I have never been worried about her having anesthesia before, but after she got pneumonia last time I was a little more nervous about it.  Averi was supposed to go down to the OR at 8:00am, but it was pushed back to 9:00 and then to 2:00 in the afternoon.  Of course Averi couldn't eat anything and was not too happy about the long wait.  It wasn't until later that we found out that the night nurse had forgotten to turn off Averi's feed at midnight and hadn't done it until 1:00, pushing us back.

Besides making Averi really hungry and fussy, I was extra annoyed by this because the doctors said that she couldn't eat orally until a therapist came to do it (she has been on 24 hour feeds since coming back from the PICU) and someone was scheduled to come at 1:00pm.  Now we were going to have to wait another day.

I realize that isn't normally a big deal, but we know from experience that Averi goes backward very quickly and it has been a week since she has taken anything by mouth.  Luckily I convinced the doctor last night that I could feed her if the nurse was in the room.  I gave her 2 ounces in her honey bear and she drank it like a pro.  We are slowly trying to get her back up to her feeding schedule from home and she is doing really well tolerating the feeds.

In other good news, the doctors gave her a steroid immediately after the procedure so she's hardly had any noisy, labored breathing.  She's been really mellow today but not too fussy so we are counting our blessings.

The Help Averi (and her family) Website

Many people have offered to help us during this recent speed bump in our lives and up until now I haven't really known what to ask for.  Now that we have gotten our feet wet, I think I might drown if I don't start accepting the offers.  I decided to set up a website where friends can sign up to help us out with things that we are need of.

I have to admit, it feels really weird to ask so blatantly for help, but I wouldn't be doing it unless we really needed it.  Hopefully using the website will help people feel less obligated than if I asked them in person and people won't get bugged by me all the time. :)

(This picture is here solely to lure you into wanting to help us...whahaha.)

How to access the website:

1 - Go to calendar.google.com

2 - Log in using:   Email: helpaveri     password: loveaveri

3 - A weekly agenda will show up.  Press the arrows at the top left to move from week to week.  The days are labeled with times that we would appreciate some help if people are willing to give it. :)  I know the times to watch Kaili are long but we are flexible.  If you can watch her part of the time please indicate it and I will contact you to work out the details.

How to sign up for a slot:

1 - Click on the time slot you would like to fill

2 - When the bubble appears click "edit event details"

3 - At the top of the page, next to the activity you are signing up for, write your name and a form of contact.

            Ex.: Next to "Watch Kaili - " I would add "Tiffany 614-949-9205"

4 - Click "save"

5 - When the bubble appears, click "only this instance"

6 - I will check the calendar daily and contact people to work out final details.  Thank you so much!

We will try this out for next week and see how it works.  I am so grateful for all the continued support we receive every day.  Thank you for helping us out and for being our family away from family!

Photo Shoot

Averi is feeling much better, although not completely awesome.  She gets tired faster and enjoys extra cuddling but she's not napping very well since she returned from the PICU.  However, we are able to get more and more smiles, kisses, and waves out of her, so that's a good sign.

Yesterday, an organization called Flashes of Hope came to our floor.  It is a national group that goes to hospitals and takes black and white pictures of children with cancer, for free.  They did my hair and makeup and took some really fun pictures of Averi and me.

They said it takes 4-6 weeks to get the pictures (I want to see them now) but they will give us two 8x10 pictures in a display binder, all of the pictures printed as 4x6s and a CD with all the pictures on it that we can use as we please.  Did I mention it's free?  I wish I had known they were coming because we would have had cuter stuff to wear and I would have had Kaili here.  They come back every month though, so I will be getting some super cute pictures of Kaili and Averi in November.

I took some post photo shoot pictures for you to enjoy.  This one is my favorite.  It makes me giggle every time I see it!

Thank you kisses for all of your prayers and support.

I was extra happy that they came this week because Averi has officially started loosing her hair.  I found a few strands in her bed yesterday and this pile this morning:

Her hair is so fine that she doesn't look any different yet.  I wish it would all just fall out in one day I wouldn't have to pick it off of her all the time.  I even find it in her mouth sometimes.  I think I'm not very attached to it yet since it's still so short.  (Kaili's hair falling out would be a completely different experience.)

Just for the record, once it's obviously falling out, we will be buzzing her noggin.  If there are any suggestions for funny things that we can do to her hair while she still has it, I'm all ears (like a mohawk for example).  It's a good thing we already know she looks really cute in hats. :)

Today I dressed Averi up for Halloween and played photographer.  She wouldn't really look at me but they still turned out really cute!

The only smile and it's blurry. :(

Tasty pumpkin!

Happy almost Halloween!

Tonight Averi wouldn't let Dan put her down without crying.  She is such a daddy's girl, even if I'm holding her.  With Kaili this would have bugged me but I think there is so much going on in her life that I'm totally okay with it (even if I do give Dan a hard time about it).  It's the same with her being such an avid thumb sucker that her left thumb if cracked and dry.  If it's comforting, she can have it.

Sometimes I wonder if I'll be able to say no to Averi like I do with Kaili, not that I'm mean with Kaili but she understands consequences.  Averi's already at a disadvantage in understanding things, such as discipline, and then she's had such a hard life on top of that.  Hopefully it will get easier as we put all of this medical crap behind us.  Just my rambling thought for the day.

Pediatric ICU

I know I am way late in posting about this but it has been a crazy weekend!

Averi continued to throw up into Friday.  I could tell she was feeling worse and worse because she never really woke up or went to sleep and just rolled around in her bed moaning.  Later in the day she started randomly screaming out, which I've never heard her do.  They tried changing her feeds to a continuous feed in hopes of stalling the vomiting.

In the afternoon, she added excessive diarrhea to the mix and spiked a fever in the 102's.  I think I've said this before, but fevers are a really big deal for the oncology patients, so they gave her some tylenol, started her on an antibiotic, and took several blood cultures.  The tylenol didn't seem to help at all, with her discomfort or the fever, and I was told that she couldn't get motrin because it affects platelets.

I finally picked her up to try and calm down the rolling and moaning (every time I picked her up she would throw up so I was trying to leave her laying down).  I sat down with her in the chair just as the nurse came in to check on her.  She looked her over and then asked if she could turn on the lights to take a closer look.  Averi's skin was mottled and her legs were cold even though her head was burning up and her fever had gone over 103.

The nurse wanted to get her blood pressure but couldn't get the machine to work so she left to find another one.  Thirty minutes, a new cuff, and 6 machines later, she manged to get a reading showing an almost non-existent pressure.  By now, Averi's arms were cold as well.  Luckily, Dan arrived as the blood pressure machine search was going on.  Finally, the doctors were brought in and everything started to blur together.

The doctors wanted Averi on the bed so they could look her over.  When I laid her down we noticed that she wasn't focusing on anything and her eyes were glossed over.  Soon the ICU doctors arrived to assess her and more machines were turned on.  It turned out that she basically had no blood pressure and her heart rate was over 200 bpm.

At one point, her eyes rolled back in her head and she started seizing.  I didn't see it because I was on the other side of the room trying to get Kaili to sit still by making her some food.  Dan said it was the first time he has ever thought that Averi's life was in jeopardy.  I looked over at him at one point and his eyes were red.

She was septic, all of her blood was infected.  They gave her a bolus of saline in her broviac and her heart rate immediately went down a little.  Then she was taken away to the PICU.  Dan went with Averi and I stayed with Kaili in the room.

(A couple of hours after being admitted to the PICU she was already looking better...yes, this is better.)

Once in the PICU, Averi was started on more antibiotics, given several more boluses of saline until she could be given a blood transfusion, and had a catheter put in.  No one ever gave us a straight answer, but from what we heard she was suffering from a combination of sepsis and hypovolemic shock (severe dehydration).  I have yet to figure out why she didn't have an IV going once the diarrhea started.

(Her med concoction in the PICU.)

She was kept in the PICU for 2 days and slowly started looking better.  They finally brought her back up to the oncology floor this evening.  Obviously, she still isn't herself but she's had great improvements since Friday.  She's still a little fussy and sleepy and doesn't really want to play, but at least she will focus on us and lift her arms and legs.  They are slowly upping her continuous feeds to make sure she can tolerate them and the antibiotics are going to be decreased tomorrow.  Hopefully she can get some good rest tonight.

I'm praying that this isn't a sign of what's to come every month with the treatments, but I know in my heart that it probably is.  I know she's strong and she's a fighter, but there has to be an end to this madness sometime, right?

Throw up

Poor Averi!  The effects of chemo are finally setting in.

Yesterday Dan took the day off work to sit with Averi while I went with Kaili on her field trip.  It is now official that whenever I leave bad things happen.  Dan called at 9:00 in the morning to inform me that Averi had just thrown up her entire breakfast.

She continued to throw up throughout the morning but finally calmed down after they gave her some medicine.  When Kaili and I got here for dinner she looked pale and had bags under her eyes but was playing and handling her pump feeds at a really slow rate.

Averi looked really tired so I put her to bed expecting a restful night that would help her feel better.  Wrong!  She threw up 4 more times between 10:30 and 1:00.  Finally the nurse gave her a different medicine that would help with the nausea and had a side effect of sleepiness...thank goodness.

She made it to 7:00 this morning before the medicine wore off and she got sick a couple more times.  The poor thing was just restless all night and I woke up every time she coughed and ran to the bed to make sure she wasn't laying in puke.  Fortunately she is still 'sleeping' now.

I have to admit that this brought on my first melt down.  I know she feels awful and I just feel so helpless.  There's nothing I can do but change her sheets, wipe her down, and rub her back.  Why does she have to go through all this?  Her life is hard enough, why does she have to feel like crap too?

It's not even that I'm bitter about the short straw she's been handed in life, I've accepted that.  I'm just tired of not being able to make things better for her.  I feel so incapable.  She's my daughter and I love her so much and I should be able to kiss it all better.  Isn't that what mom's do?

Good Things

I'm trying harder to focus on the good things that are happening in our lives along with the all the technical things.

The first great thing is that Averi loves music and loves to dance and I finally have proof.  Unfortunately, my proof is sideways, but you can get the gist of it.

She couldn't stop dancing while the music was playing.  I don't even know if she realized she was still doing it after a while because her eyes were staring off into space.  I love it!

One really awesome thing took place last week and I forgot to mention it (again with the forgetting to count my blessings).  Let me preface by explaining that there is a $2 fee for the parking garage here at Children's.  It's annoying for appointments but uncalled for when you have a child admitted to the hospital.  Dan told this opinion to the social worker who put us on a waiting list for a parking pass.  We had no hope of it working out since the list is long, it doesn't back pay, and we would probably have to return it and reapply every time Averi was discharged and readmitted.

Well, last week the social worker brought us our very own PARKING PASS!  We can even keep it until Averi is done with all her chemo (I might keep it a little longer since we are here all the time for appointments, but you didn't hear that from me.)

Another great thing is that Averi is slowly but surely getting stronger.  The other day she was fidgety so I got out the mat and let her roll around for a while.  She loved it!  Her cords were a tangled mess but she was very happy to be able to move.  She even rolled onto her tummy and stayed there to play, which never happens.

At one point she pushed up with her arms onto her hands and turned her head so that she could see me sitting on the couch!  I have never seen her do that, ever.  She even held it long enough for me to get a picture.  I am so proud of her and all that she is accomplishing, despite all the things she is working against.

One last great thing that has happened is that yesterday we were moved to a bigger room.  This may not mean much to those of you who never saw the other room, but it is very exciting for those of us who have to live here.  It is a corner room with lots of windows (still overlooking the parking garage =P) and there are a few things I miss about the small room (apparently I'm never happy) but it is much bigger and accommodates all our long term living stuff.  (At one point last week the doctor jokingly told me to unpack and set up the window curtains because we would be here for a while.)

As a quick update, Averi is still doing just fine and playing and napping like she always has.  She was put on isolation today, meaning the employees have to wear gowns and gloves to enter the room, because she is still having diarrhea and they want to test it.  Other than that, life has found a new kind of routine and we are doing just fine.

A Word from ENT

We had another great day today, including three visits from friends.  When Dr. Pillay, Averi's oncologist, stopped by this morning, she said that we may even get to go home early since Averi is doing so well.  I'm trying really hard not to get my hopes up.

Chemo officially ended today around 5:00pm.  Looking at Averi you would have no idea that she just had chemo for 4 days straight.  She is just her normal playful self.  One thing that the doctors did mention that we will have to keep an eye on is if Averi starts getting mouth sores (one of the side effects of chemo).  If she does, they may cause swelling which could very quickly close up her airway that is already small and wimpy.

I finally got a chance to talk to someone from ENT, on the phone, about Averi's MRI.  The results showed that she is completely missing the nerve on her right ear, which means that there is nothing that can be done to make her hear on that side.  When he said it was good that we were following with audiology and getting a hearing aid I explained that we had decided not to stress about it right now while she was too young to keep it on her head and wasn't having long distance conversations.

He then explained that it was vitally important that she get one sooner than later and that it would be a big improvement...blah, blah, blah.  Really, you want me to deal with this right now?  I finally agreed to contact audiology and ask for one of their trial hearing aids.  I'm skeptical but we might as well try it since we have nothing else going on in lives.

In funny news, the nutritionist came in to visit us last week and asked me what I thought about Averi's weight. I said, "Um, I think it's fine!"  She informed me that she was only in the 25% and could stand to gain a little weight.  What is it with these people and wanting 50% for everything?  She said she would put in a suggestion to increase Averi's feed by 10%.  Whatever.  Fortunately, I think her suggestion got lost somewhere because no one has said anything to me about it since. :)

Normal

I realized today that I tend to post less when things are going well (or really, really bad).  So, I'm sorry to have left you all hanging for a couple of days but things have pretty much just been...normal.

On Friday, Averi ate the best and fastest I have ever seen her eat.  This was totally surprising since she is getting meds for nausea and I figured she wouldn't be interested in eating.  Then it hit me, they gave her a steroid to help with the swelling in her airway and steroids tend to make you hungry.  It didn't last through the next day but at least she enjoyed food for a little while.  Maybe they can give it to her long term and Frances will be really impressed. :)

I know everyone reacts differently to the chemo, but I didn't expect her first day of it to be her best day since being admitted.  She spent the day playing games

and reading books.

Yesterday was just as "boring" (knock on wood) and the only thing that really happened was Averi getting another platelet transfusion.  Whenever she is given a blood product, the cap on her broviac has to be changed and everyone in the room has to wear a mask.  Dan managed to get Averi to keep hers on.

My mom left and Dan took care of Averi while Kaili and I cleaned and did laundry.  Usually we all meet in Averi's room in the evening for dinner and hang out and then one person takes Kaili home and the other one spends the night.

Today we went all out and put some real clothes on Averi.  We even went for a walk around the floor (she can't leave the floor while receiving chemo) which was nice since she hasn't been out of that room for a week.  Her chemo will end tomorrow night and then we will just do more waiting while her blood recovers.  Let's hope it's as 'normal' as the last few days have been!

Chemo has Started

Yesterday went much better than Tuesday.  The fever was gone and Averi was acting more like herself thank goodness for antibiotics).  The doctors told us to just sit tight and let her finish recovering, and if everything went well they would check her out today and maybe start the chemo.

Other than just getting better (so we can make her sick again), Averi did a lot yesterday.  PT came by and worked with her for 30 minutes.  They are going to come 3 times a week.  Hopefully that will be really good for her.

The massage therapist came by as well and Averi really liked her.  She did really simple things, just to get Averi used to her, like downward motions on her back, arms, and legs.  She is going to come back 3 times a week as well.  I have to admit, besides the whole being really sick thing, I might have to consider spending some time in the hospital.

All in all, Averi was almost herself and I had great hopes for today.  Early this morning, we went down to radiology for Averi to get another chest x-ray.  The doctor said that the pneumonia is still there but looking better and that she would talk to the other doctors about starting chemo today.  I know it seems silly to not want to wait just one more day since we have 6 months of this ahead of us, but every day counts.

Luckily, they decided that she was healthy enough to be made sick and they started the chemo this afternoon around 5:00.  This treatment will be given continuously for 96 hours.

I had no idea how toxic the drugs are that they are giving her.  They have to be given with saline to dilute them and it can't come in contact with anything.  We have to wear gloves to change her diapers and if any urine, poop, or vomit gets on us we have to wash and change immediately.  It is orange and will turn her urine orange as well, and it even has to be kept in a brown wrapper to protect it from the light.  That definitely sounds like something I want to be putting in my daughter.

They also gave her a steriod to help with her breathing since it is still a little labored, and some meds to help with the nausea.  It's weird not knowing how she will respond to the treatment because then I can't mentally prepare myself.  Hopefully all goes well and we will be free and clear in just 6 months!

Not in the PICU

Today went much better than yesterday.  Although she's still not 100%, Averi is doing much better.  She wants to be cuddled more than anything right now, which is not a problem, and kept waking herself up while trying to breath last night.

Luckily she didn't need to be sent to the PICU.  She's still on oxygen and getting antibiotics, IV fluids, and lasix (to keep the fluid off her heart and lungs).  Her hemoglobins were low so she received her first blood transfusion, which really perked her up.

She managed to sit up and play for a little bit this evening.  This was wonderful because last night she couldn't even pick up her arms to grab for a toy.  Her fever has also gone down below 100 and she sounds tons better, but not perfect.  The doctor said that if everything goes well she will be able to start the chemo on Thursday or Friday.

Kaili has been wanting to see Averi ever since she was admitted so the whole family hung out in Averi's room for the evening.  I think Averi enjoyed the company.  I want Kaili to spend as much time with her sister as possible since she won't be able to come to the hospital once flu season officially starts.  She really wants to spend the night with Averi but she's not allowed.  At least they got to sleep together on Averi's last night home.

Hopefully tomorrow will be uneventful and she will recover from the pneumonia quickly so we can get going with the treatments...if that's okay with Averi's schedule.

Last Bath

Once Averi has her central line put in she won’t be able to take tub baths, so I put the girls in the tub this morning and told them to play as long as they wanted.  Kaili was very excited (she loves doing anything with her sister) and Averi was happy to be able to splash.

When they had been in there for a while, I left for a second to get a shirt and returned to find the tub full of poop.  Kaili was playing with her toys on the side of the tub and stared at me like I was crazy when I screamed, “Stand up stand up, you’re sitting in POOP!”

I finally got them both out and sat Averi down on a towel.  Dan, being the helpful husband that he is, was outside mowing the lawn and couldn’t help so I decided to just leave the poop where it was and fill up the tub in the other bathroom.  When I returned from that, Kaili informed me that Averi had peed.  I patted myself on the back for sitting her on a towel until I realized that the towel was on the bathmat and both were now soaked with urine.

Again I decided to leave the mess for later and bent down to pick Averi up and take her to the other bathroom.  That’s when I saw the brown chunks coming out of her mouth.  She was eating her poop!  I panicked – my first thought being that she can’t make herself sick eating poop because then they won’t start her chemo.  I stuck my finger in her mouth and tried desperately to scoop it out.  Then I started wiping her face with the urine towel.

Eventually I got her into the tub and splashed the rest of it off.  Needless to say, I decided that her special last bath was over and I washed and diapered her.

When Dan came inside later and I told him what happened, the first words out of his mouth were, “Did you get a picture?”  No Dan, no my first thought was not to stop and grab the camera while my daughter ate her own poop.  Of course he did clean out the tub for me so I can’t be too annoyed with him. :)  Maybe I’m not as upset about her not being able to bathe as I thought I was.

Let the Games Begin

Averi has had quite the beginning to her hospital stay.  She was admitted at 6:00 last night and we were shown to one of the smallest rooms I have ever seen.  After answering all the routine questions about her diet and care we started her feed and she quickly fell asleep for a nice relaxing evening…

At 9:00, the IV team showed up start her IV.  After poking her twice, they diverted to the nurse coordinator who poked her twice more and then paged the nurse practitioner from the NICU.  Two more pokes and 3 hours later they finally got an IV started in the crease of her right foot.  She screamed so hard that petechiae (those broken blood vessel red dots on her skin) burst all over her face and arms.

(Warming all her extremities in hopes of finding a vein.)

Dan was spending the night and at one point asked the anesthesiologist what would happen if an IV wasn’t started.  He explained that Averi couldn’t go into surgery without first getting a platelet transfusion.  Luckily she was finally able to get the transfusion at 1:00 in the morning.

At 3:00 and 6:00 the nurse returned to poke her several more times, including her head, in hopes of getting enough blood for several tests.  Both times the blood clotted and was unusable.  It was decided that they could wait until after her central line was put in to do any more tests.

This morning, after a restful night, Averi was taken to the OR for her procedures.  First the ENT came and conducted an MRI of her head to see what is going on with the lack of hearing in her right ear.  After that the oncologist did the spinal tap and put a little bit of chemo in her spine.  Finally, the surgeon, who also did her second G-Tube placement, put in her central line.

(Dan put the socks on to keep her from pulling her IV out.  Note the crib made of PVC pipe to take into the MRI room.)

Everything went as well as it could have.  The surgeon said he was able to go in through the vein on her neck, which is preferred but not always possible, and placed the line in the center of her chest.  We originally thought she was going to have a picc line, which is attached to the arm, but hers has two ports that come out her chest and are taped down on her stomach which is much easier to keep out of the way and can be covered up with plastic wrap while taking tub baths.  They refer to it as a double broviac catheter.

It took 2 more hours for her to be returned to her room and she sounded horrible when she got there, which is normal.  She was on a little oxygen but they quickly weaned her off it and took out the IV (yippee, no more pokes).

A chest x-ray was done in the OR so all she had left to get were an echo and an EKG.  She was still really out of it from the anesthesia so the echo and EKG went really well.  Once we were back in the room again the nurse came and got several vials of blood from her broviac for testing.  Averi slept right through the whole thing.  It was wonderful!

(Dan was so tired, he almost fell asleep during the echo.)

At one point we met the nurse practitioner that will be over her chemo treatments.  I asked her how quickly Averi would get sick once we started (would it get worse each month or start bad and stay there) and she said the first few months would probably be the hardest.  Great!  She then told us that they haven’t had a patient with MDS for several years.  There’s just more proof that Averi loves the word RARE.

Since everything was done for the day, I decided to head home and spend some time with Kaili.  Not too long after my return home, I got a call from Jennifer, who had gone over to visit Averi and Dan, that Averi had a fever of 103.8 and the results of another chest x-ray showed severe pneumonia.  They don’t know for sure where it came from but the speculation is that she aspirated on her spit during intubation.

She was given a breathing treatment, antibiotics, lasix, and some Tylenol.  Then the PICU doctors were sent up to examine her and learn her medical history so that they can be ready if she gets any worse and needs to be sent to their floor.  She won’t be able to start her chemo until she recovers from this and her temperature stays below 100 for 24 hours.

For the time being she is finally a little bit awake but burning up.  Hopefully she will have a less eventful night and be able fight off the infection in her lungs.  I could be wrong, but I’m pretty sure she’s not supposed to get sick until after the chemo starts.  Of course, with Averi, we should expect it.

Team Can’t Keep Me DOWN

Today was the long awaited Buddy Walk.  First of all I have to thank all of you who made donations.  Our team reached the goal so that we could have our name printed on the backs of our shirts.  They turned out very cute!

We got there early to tailgate and it was freezing cold.  We were a little unprepared for the 43 degree weather (I brought a light hoodie) but we made the most of it.  Averi was the smartest and used Dan’s body heat to keep warm.

My mom drove up to support us and we were all able to hang out with our friends from the DS support group.  We even got an awesome picture of all the moms and their kids.

There were tons of fun activities to keep our minds off the cold.  Kaili got a princess crown.

At 10:00 we walked the mile around the stadium.  Kaili insisted on staying under the blankets and Averi zonked out.  Walking is hard work. :)

I am grateful that we have the opportunity to support such a great cause.  Like I’ve said before, life doesn’t always take you where you think you should go, but at least you can make the most of it while you’re there.