Saturday, April 30, 2011

Guilty

Today was the first day, since starting chemo in October, that neither Dan or I went to the hospital to see Averi. Now before you judge, Dan's mom was with her the entire day, so she wasn't alone...just parent-less.

We have lots of excuses - Dan spent the entire day taking apart and rebuilding our car engine, I bought and wrapped presents and made cakes, we are allowed to take a day off, blah, blah - but I have to admit that I feel pretty guilty.  It's probably even worse because tomorrow is her birthday and we won't get over to the hospital until after church, so it will almost be 2 days without seeing her.

I know she knows we love her and it's not a big deal in the scheme of things, but I hate that we're even in a situation where we have to  make that decision.  Our family shouldn't have to be away from each other for such long periods of time.  Why can't things just go back to being simple and lazy, you know, like in the days before cancer?

Friday, April 29, 2011

Use Those Feet

In the scheme of living at the hospital, today could be filed under good days.  Averi didn't need oxygen last night, her ANC finally started going up (to 12, but up none the less), and her orthodics came today!
Here's the background on Averi's feet...she doesn't know she can use them.  When you try to stand her up she pulls her legs up.  If she ever does straighten her legs, they are overextended because she is mad, which also doesn't use any muscle.  You can't learn to walk if u refuse to stand.

After some encouragement from a friend and DS mom, I decided to push the issue of getting orthodics.  The catch?  They don't usually prescribe orthodics until a child is standing and cruising.  I convinced her inpatient PT (who has worked with them but never prescribed them) that orthodics would help Averi be more aware of her feet, give her something to push with when trying to crawl, and help give support to her almost nonexistent little ankles.

It worked.  She made the call and worked out a way for the man who makes them to come to the hospital for the fitting.  After several weeks of being in and out of the hospital for illnesses, we finally started this cycle and he came last Friday to measure her ankles.  And today, they finally arrived, all cute and tiny!

Orthodics have to be worn with shoes, which is funny because Averi's feet have never been big enough for even a size 1.  With the orthodics on, however, she fits snuggly into a size 3.  Looks like we are going shoe shopping.

Thursday, April 28, 2011

On Again Off Again

Averi has recently started an "on again, off again" relationship and I don't know if I approve.  I'm sorry Averi, but the oxygen has got to go.

Ever since her bout with what the doctors are calling bronchiolitis, she has been needing oxygen while she's asleep.  She's totally fine during the day, and as of today doesn't even have to wear the pulse-ox when she's awake.  As soon as she falls asleep, the story changes, even during her naps.  Her oxygen levels just sit right around 88 until the nurse finally puts her on a teeny, tiny amount of oxygen.

Occasionally she doesn't need it, but just when my hope get up that she's fine, the oxygen goes back on.  Her poor little face is so torn up and scabbed from taking the oxygen stickers off and then having to put new ones on.  Like I said, this relationship is no good at all.

On a super exciting note, Averi did something new today during Speech Therapy...she tried to say a word.  The ST was playing with a ball and saying and signing it and out of the blue Averi made a "buh" sound.  She even repeated it at the end of the session when the ST said bye.  The rest of the time she just moved her mouth and whispered inaudible sounds.

She has never tried to say consonant sounds before so this is a really big step for her.  Lately she has become a lot more vocal and has started making several new sounds, not that they are letter sounds but she is definitely exploring her abilities.

It's funny because I had just finished asking the ST if there was anything different I needed to do to help Averi start saying words instead of signing them.  I have tried to get her to say mama, naturally, and all she does is sign it with no effort to vocalize.  The ST said that I didn't need to do anything different and that Averi would figure it out on her own.  Apparently she was right. :)

Tuesday, April 26, 2011

Get into Sit

I put Averi down for her nap yesterday, walked across the room, and turned around to find her sitting up in her bed.  Knowing better than to think she did it all by herself, I reclined her bed (it was elevated pretty high in hopes of helping with her breathing) and laid her back down.  Again I turned to see her sitting up.

After repeating this a few times, I stood beside her crib and watched her.  Being the sneaky/lazy girl that she is, she grabbed the railing and used it to pull herself up.  I tried laying her down further away from the railing with no prevail and finally resorted to having the massage therapist come in and massage her to sleep.

Today was a little bit different.  I put Averi down for her nap and left for about 30 minutes to give her time to fall asleep.  When I returned she was sitting up, scooted down to the bottom of the crib, and playing with her music star.  This time when I put her back down she sat up without the help of her railing!  I couldn't believe it.
video
As happy as I am that she has finally learned to get into sit all be herself, I am a little concerned about her future nap times. :)  We will be working some more on her getting back out of sit skills.

I suppose that if she couldn't learn to crawl by her birthday (darn croup and crazy virus got in the way of my time line) then this is an awesome milestone to replace it!  Go Averi!

Monday, April 25, 2011

Hair Today, Gone Tomorrow

Lately the nurses have been commenting on how quickly Averi's hair has grown back in.  I intended to buzz it again when we went home after cycle 4 because it was still thin and wispy but it just started growing all of a sudden.  Not only is it growing, but it's coming in even and thick.  I've even started day dreaming about pigtails.

This was her noggin just 2 days ago.  (She was loving the new slinky and kept using it to accidentally pull the cannula out of her nose.)
And this is what I pulled off her noggin today after finding stray hairs all over her bed and clothes.
Apparently this round doesn't make her as sick but it does make her bald again.  Hair buzzing pictures soon to follow...

Sunday, April 24, 2011

Easter in a Tomb

In true Easter tradition, we dyed eggs last night.  Averi felt well enough to help out a little and color on the eggs with a crayon.  Try to tell me she doesn't look like a hillbilly in this photo.

Dan started his Easter morning by cleaning up a poop covered Averi.  Once she was all clean, the nurse accidentally pulled out Averi's G-Tube, soaking her in feed and warranting another clean up.  Mmmm!

Averi is finally starting to feel a little bit better.  Her temperature has dropped enough to be normal while on tylenol (fyi: immunodeficient kids can't have motrin, so tylenol is all we've got).  They took her off the oxygen and IV fluids and even started half volume tube feeds.  They had stopped all food intake with concern that she might puke and aspirate on it, adding more fluid to the buildup in her lungs.

After getting platelets just a few days ago, she had to get them again today.  Apparently having a fever burns off platelets quickly so they gave her a high dose this time.  Hopefully it helps her little body feel better tomorrow.

Averi can't even leave her room right now so it seemed silly to dress her up for Easter, but I did it anyways - just for the pictures.

Happy Easter!

Thursday, April 21, 2011

Exhausted

Last night Averi's nurse had a wonderful idea (I love when that happens, even if it is rare).  She told me about a tylenol they have called T3, with added codeine.  Codeine is a pain reliever, helps treat coughing, and can be given to little ones.  Who knew?

It has made a world of difference.  The coughing has diminished greatly and the sleeping side effect has helped Averi make up for last night's lost sleep.  She literally slept all day long, except for maybe 2 hours total when she opened her glossed over eyes.  One time I sat her up and turned around to find her laying on top of herself.
Unfortunately, she has managed to get even worse.  Even with the T3 being administered around the clock, she's had temperatures of over 103.  She has started retracting her ribs and flaring her nostrils in an effort to breath better and is getting albuteral aerosols every four hours to help with her wheezing.

When the night nurse took over, she suggested finding out what Averi's oxygen levels were.  When the moniter turned on, it read 72%.  We both thought it wasn't picking up correctly and she readjusted it.  Nope, the 72 was accurate and she immediately hooked Averi up to oxygen.  Then radiology came to the room to x-ray her lungs and make sure she doesn't have any fluid building up.

For a moment, I thought we were going to be taking another trip down to the PICU.  Things have calmed down a little though, and I think Averi is breathing better now that she has some added help.  I really hope this doesn't last long, the poor thing needs a break.

Wednesday, April 20, 2011

But I'd Do it at Home

Well the coughing hasn't stopped, but it has gotten worse.  Averi keeps coughing so hard that she gags and pukes.  The coughing is really tight and dry so I had the nurse give her a saline aerosol last night to help wet her throat and lungs.

After puking in the middle of the night, Averi got some zofran to help with the nausea.  Then it started coming out the other end and I changed a nice big diaper.  While changing her diaper, I noticed a strange rash on her legs.  I looked her over and found raised, scabbed over bumps all over her arms and legs.  The resident assured me that it didn't look like an allergic reaction and said that it would either get better or worse.  Hmmm.

By this morning Averi was puking again.  When I asked for more zofran it was denied by the doctors with an explanation that the puking was just coughing induced.  And when I asked what they were doing to treat the coughing they said nothing because she is too young for cough medicines.

What drives me crazy about hospital life is when I'm not allowed to do something that I would have already done if I were at home.  Why do the doctors tell me to set up a humidifier at home but refuse to give my daughter a saline aerosol while she's breathing the super dry air from the hospital filtration system?  Why can't I give her zofran when I have a whole bottle of it at home?  We are on a chemo floor, I don't think there is a shortage of zofran.

I kid you not, I spent the entire morning climbing the ladder of authority until the attending doctor finally approved the zofran.  And guess what?  She stopped puking!  Yes the puking was coughing induced but she was nauseous on top of that because she just finished getting chemo for 7 straight days.  Give her a break.
(They had an egg hunt on the floor but Averi didn't feel up to going.  When they brought her some treats, we tried them on.  This picture perfectly captures how she feels today!)

Just as I thought things were starting to calm down, Averi started feeling warm.  A temperature of 101 meant taking cultures, starting antibiotics, and finally giving her some tylenol.  I don't think things are going to calm down any time soon.

Tuesday, April 19, 2011

You Don't Need That

Averi has finally finished the last day of her week long stent of chemo.  Being hooked up to an IV for that long was not easy.  Several times we had to roll Averi repeatedly to get the tube untwisted.  Oddly enough, when the nurse took the chemo down it was at least 30 minutes later before I realized that I didn't need to roll the IV pole around the room with me when I was holding Averi.  Opps!

During therapy today the OT was trying to get Averi to put large puzzle pieces in the right spot.  When I told her she had picked up the cat I signed it to her - and she signed it back.  I have been working on that one for a while and she's never made any effort to repeat it.  I guess it was just building up until she could perfect it and wow us with her skills.

Since Averi's chemo is done, it is starting to kick in, and that means low blood counts.  Her hemoglobin was really low today so they gave her some red blood cells, and these weren't just any red blood cells, these were grandma's.
Along with the low counts comes the nausea.  I was really hoping that she wouldn't get sick this time since the dosage was smaller but that doesn't seem to be the case.  She has been coughing over the last few nights and today she coughed so hard she threw up.  I think the coughing and nausea are not a good combination.

Sunday, April 17, 2011

Squirted

Dan woke up this morning to find Averi, once again, with her Mickey button in her hand instead of her stomach. She doesn't do this at home and I'm convinced that she just gets bored at the hospital and finds ways to occupy her time.  At least it was in the morning when her stomach is empty.

When Dan told me about it I informed him that we need to be really careful with her tube for the next few days since the hole has been stretched out.  I should have been talking to myself.  After feeding her an entire jar of sweet potatoes, I picked her up to put her back in bed.  While setting her down facing me, arms length away, her button popped out again, squirting my whole front side with orange mush.

It was an ambush.  I was totally set up. ;)  I sat her down, covered her hole, and stood there for several minutes waiting for someone to show up and help me.  I couldn't reach the call button and I couldn't let go of her stomach.  Luckily, the PCA showed up shortly to check on us and helped me out.

If something crazy isn't going on, you must not be in Averi's room!

Thursday, April 14, 2011

Fruit Snacks

Cycle 5 is moving along as planned.  The chemo that she gets for the first three days is now done, along with the annoying 15 minute blood pressure checks.

This cycle has really knocked her out.  She has reverted back to 2 naps a day and sometimes even sleeps in a little in the morning.  I could get used to having more free time to get things done.  She is still a little grumpier than usual and being weird about eating.  I really hope it's just the remains of the steroid and not a bad habit she's gotten into.

I realized the other day that Averi doesn't have any allergies to fruit snacks so we cut some up and gave them to her.  She was way more interested in playing with them than eating them, but it kept her busy regardless.  After a while they got really sticky and we noticed her lip taking on new form with her nose.  It was good for a giggle.
I also noticed this morning that Averi is growing another tooth.  No, it's not the front one on the bottom...it's a molar behind her molar.  I had to recheck because I thought I was seeing things.  Why does she have the equipment for foods she can't eat?

I guess the biggest news today was that Averi pooped, after not doing so for 6 straight days.  I think part of her not eating well is that her system is so backed up that it makes her uncomfortable.  Yesterday I asked the massage therapist to come do some extra work on Averi's abdominals, and I think that helped (along with the milk of mag and colace she's been getting every day).  I'm sure there is more to come. :)

Wednesday, April 13, 2011

Sisters

I've been waiting almost 3 months for these, and we finally got them.  Nothing beats the bond created by the love of a sister.








Tuesday, April 12, 2011

It's True

We have finally started cycle 5 of chemotherapy!  It's hard to believe, but true.

We started the day off in the Day Hospital, the "faster way to get chemo started" and then transfered to the floor around 4:00.  Averi will be getting a constant drip of one chemo medicine for 7 straight days.

The other one, which is a new one, is given for an hour for the first three days.  It can affect her blood pressure so that has to be checked every 15 minutes while the medicine is being given.  As it turns out, they decided to start it during her nap time, so she will get to endure 5 blood pressure reads while trying to sleep.  Yipee. :)

I know I will probably be less excited next week when/if she gets sick, but at least we are getting it behind us.  Only one more treatment after this one!

Monday, April 11, 2011

Steroids are Bad

It hasn't been Averi's best week.  Apparently steroids do some crazy things to people.  She's been having mood swings worse than a menopausal woman.

She has been extremely fussy, grumpy, and inconsolable.  She wants to be held and then wants to be put down and then wants to be held.  We have no idea how to console her because she has no idea what she wants.

Eating has gone down the drain.  Seeing us get food ready makes her happy and then we try to give her a bite and she freaks out before the food even touches her lips.  Then a tantrum breaks out and then she's eating and then she's not.
(Kaili sat on the floor with Averi last night and read her several books.  She even let Averi turn the pages.  It was super cute!)

Per doctors orders, we slowly weaned her off the steroid until Saturday and then went to the clinic today for blood work.  She has made great improvements even from yesterday.  Hopefully we will never have to use steroids in that high of a dose ever again (I probably just jinxed myself).

I was adamant about staying at the clinic until her results came back so that we would know for sure what the game plan was and someone wouldn't forget to call us again.  After a couple hours the nurse told me that Averi's ANC was was over 4000 and she would check with the doctor to see if we needed to do anything else before we left.

Just as I was sending a text announcing the great news, she returned and said to wait because the doctor was deciding if the ANC was due to steroids.  I was so annoyed.  I even specifically asked before we were discharged to make sure this wouldn't happen.

Luckily, they decided that 4000 was high enough that even if the steroid was affecting it, it wasn't enough for it be below 1000 without it.  Then they scheduled her to be admitted tomorrow!  It was a close one, but we prevailed. :)

Wednesday, April 6, 2011

Not Yet

We have now been admitted and discharged 4 times since we left the hospital at the end of cycle 4.  I am beginning to doubt that we will ever start cycle 5.  Yesterday during rounds the doctors told me that they were going to keep Averi until she was over the croup and then just start her on the next cycle today.  The funny thing is that I believed them.

Today they changed their tune.  I was informed that the steroid she is on to help with her breathing can also affect her blood counts, making them appear higher than they really are.  With this knowledge, they don't know if her counts are up because her bone marrow has truly recovered or if it is just a false positive.  Great.

Then they announced that instead of weaning her off the steroid by today (it was a really high dose) they are going to do it more slowly while we are at home, all the way until Sunday, and we could come back in on Monday for blood counts.

That's when I had to explain to them that there was no point in coming in Monday if I had just given her steroids the day before, because they would just tell me again that it was a false reading.  I convinced them to wean it through Saturday and then found her primary doctor to make sure that we can still start chemo Tuesday if Monday's reading is above 1000.

No more games for us...and another week at home.

P.S.  Sorry I haven't taken any pictures lately, Averi has looked really pathetic.

Monday, April 4, 2011

Syke!

So guess what happened last night...a repeat of Friday night.  Averi came home yesterday acting completely normal and breathing just fine.  We even went for a family walk and enjoyed the almost spring weather.  Once we put her to bed, however, it was all down hill and no open window, humidifier, or upright position could stop her ribs from retracting.

She was already scheduled for a clinic appointment early this morning to have her blood counts checked so I figured I wouldn't worry too much since she could get another breathing treatment while we were there.  Silly me.

When we arrived I told the receptionist that we needed to see a doctor.  She told me to let the lady know that takes vitals.  So we sat and waited to be called back, and then waited some more while Averi continued to sound like Darth Vader.

A nurse walked by, heard Averi, and immediately took action.  She sent us straight to the back where they set up an aerosol breathing treatment and called for the doctor.  He came back and informed me that she needed an epi breathing treatment (duh), which they don't have, and sent us to...the ED.

So we spent yet another day hanging out in the ED, and did I mention that Kaili was with us since I thought it was going to be a quick clinic visit?  She was given another dose of steroid but no epi because by then she had worn herself out and fallen asleep sitting upright on my shoulder, which calmed her breathing.

The ED doctor explained that he thought there might be something obstructing her breathing, since she wasn't getting any better and she's had a previous throat surgery, and sent for ENT.  ENT decided to do a bedside scope which involved me holding Averi against my chest while he shoved a long tube down her throat.  This greatly improved her attitude.

He didn't see anything wrong but explained that this scope only goes down to the top of her voice box.  Apparently when she was last scoped in October to make sure that her laryngeal cleft repair had healed correctly, they had noted some narrowing of the tubes just below her voice box.  He was concerned that this narrowing had swollen shut, preventing any air to pass through, and that it might need to be expanded back open.  So we packed up and headed to the OR.

In the OR, they were able to scope all the way down to her lungs and thankfully didn't find any obstructions but did see a lot of swelling and inflammation.  They suggested that she be placed on a high dose of steroid for 24 hours and she was admitted to the floor on oxygen.

I have to admit, it wasn't the day I had envisioned when I packed a few toys and no food for my four year old.  Thankfully, I think they are taking us more seriously and we will be here a couple nights before they try to send us home again with a baby who can't breathe.

Sunday, April 3, 2011

Discouraged

Today was not the day I once envisioned, not even close.  It marks exactly 6 months from the first day Averi was admitted for chemotherapy on October 3.

Back then we were naive enough to believe that her treatment plan of six 28 day cycles was a promise.  I had every hope that she would be walking out of the hospital right about now, cancer free.

Back then we looked at 6 months and thought about how hard we thought it would be and decided half a year was doable.  Now that is just a dream.

So where is Averi on the day that marks the supposed end of her run with chemo?  Sitting in a hospital room, hooked up to an oxygen tank, with another 2 treatments (and at least 2 months) left to endure.

No one is ever prepared for the news that a loved one has cancer, but they are even less prepared for how their future will be changed from that point on.  You lose all control of reality and the ability to make decisions or plan anything.  You just hang in limbo until a stranger that you have trusted with your loved one's life declares that you are free to go.

It probably also doesn't help that it's my birthday and I only got to spend a few hours of it with all four of us together.  Averi was discharged around 2 today when she proved that she could keep her O2 close to 100 without the added oxygen.  Why they didn't just keep her and start the next round of chemo (her ANC was 1102) is beyond me.  I'm just so anxious to get this '6 months' over and done with.
(After all that discouragement, here is a cute pic of the girls hanging out on Friday before the coughing began.)

Saturday, April 2, 2011

Croup Sucks

Right before we went to bed last night, after a completely normal and uneventful day, Averi woke up coughing.  I went in to check on her and knew the minute I heard that dry, barking cough that it was croup.  She's had it seriously 4 or 5 times before, but not any this winter and I was hopeful that she had outgrown it.  I was wrong.

There is no cure for croup, just ways to treat the symptoms, and I could list them all off for you without even thinking about it.  So I set up the humidifier in her room and went to bed.

One-thirty must be the magic hour (remember last weekend when she started puking?) because she woke up much, much worse.  Dan got the baby swing back out, which is great for soothing a sick baby and keeping them upright, and we opened the window to let in some cold air.  After holding her for over an hour, she didn't seem to be any better.  Her throat and ribs were sucking in with every breath, along with a very loud, audible gasping.

My goal was just to get her calmed down enough that she could get back to sleep.  Croup is always worse at night and I knew that if I could just soothe her until morning she would be alright.  No relief came.  When she still sounded just as bad at 9:30 this morning, I packed her up and left for the hospital.

I hate how much money this stupid hospital gets from us.  Thinking I could be sneaky, I took her to the Urgent Care instead of the Emergency Department, since it has a much lower copay.

As the nurse walked over to take us back, Averi threw up all over herself.  The nurse and I quickly tried to get her unbuckled from her car seat so that she wouldn't choke.  The nurse was faster than me and scoped Averi up with just enough force to unplug Averi's feeding tube (probably because babies aren't usually attached to tubes by their stomach).  Then we had fluid coming out of two holes, all over Averi's only outfit and blankets.

Once we got things settled down a little, the nurse checked Averi's oxygen level.  It was a whooping 83%.  In case you are wondering, that's supposed to be 100%.  They immediately gave her a breathing treatment of racemic epinephrine (epi) along with some oxygen.  Once her levels were up to 93 (on oxygen) she was transfered to the ED.  I asked the Urgent Care Doctor and he told me not to come back, ever - apparently the ED is the place for us.

Once we got to the ED, Averi was given a steroid to help with the swelling in her throat.  Then she had to be observed for 2-4 hours to make sure that she didn't rebound after the breathing treatment wore off.  They ended up having to give her another epi treatment and finally admitted her to the floor on oxygen around 5:00.

I hope we didn't do any damage keeping her at home last night with her oxygen levels so low.  Croup sucks, but she's never needed oxygen or repeat breathing treatments before so I assumed she would be fine.  Needless to say, we are spending the night at the hospital tonight.