Sunday, January 30, 2011

Mickey Breakfast

Late Friday night, after having her electrolytes checked, Averi was taken off of IV fluids.  I can't even tell you how grateful I am that we avoided the whole hypovolemic shock this time.  She's got a central line, so hook her up!

Averi is feeling much better this weekend.  She hasn't thrown up at all since her episodes Friday afternoon and she is much happier and closer to being her normal self.  I think this is due to 2 things.  The first is that the doctors have been increasing her doses of both Zofran and Phenergan every day.

The other reason is that I jokingly told Dan that if the chemo took it's usual week to kick in then the nausea would start Thursday and he would be the one dealing with it over the weekend.  A nice little kick in the face for me. :)

So yesterday morning Dan woke up to find a happy, raspberry-blowing Averi who was chewing on her Mickey Button!  Yes, she somehow managed to pull out her Mickey, with the balloon still inflated, and play with it.  Our daughter who has no immune system was putting her stomach funk in her mouth!

Dan quickly took it away from her, which made her cry because she was having a lot of fun with it, and had to  put it back where it belonged.  The rest of the day proceeded without event, including no puking, until dinner. While sitting in the highchair, Averi's foot got stuck in her feeding tube and she accidentally yanked out her Mickey Button again.

I'm sure it came out easier than normal since she had already stretched out the hole earlier, but this time was much more exciting since she was almost done getting an entire feed.  I'm really sad I missed it, but Dan said that everything from her tummy down, including the highchair and floor, was soaked in stomach formula.  Just the thought makes me giggle!

Friday, January 28, 2011

Tricked You

Yesterday, Averi woke up much happier than the day before.  She ate breakfast, at a slower pace, and even played a little bit.  Lunch came and went and she was still fine.  When Speech Therapy and Music Therapy showed up I gave them the go ahead.  Averi responded to their requests, banged toys, signed, and danced in her highchair.

Not two minutes after they left the room, she went from happy to puking up her lunch, just when I was starting to think that we were gunna be off the hook with only one day of puking.  I wish I could say that it stopped after that, but she continued to throw up during her massage and throughout the rest of the day, including once after she fell asleep.

The best part is that the exact same thing happened today.  One o'clock rolled around and Averi's lunch rolled up out of her mouth.  It must be the witching hour when I think we are far enough into the day that she is going to be okay.  I even fell for her trick enough to take her for a walk in the car.  At least today she only had a few episodes in the afternoon and then she was done for the rest of the day.
(Last night after dinner, Averi threw up and then tried to fall asleep on the washcloth that Dan was holding under her chin in case more came out.  She looked so cute and pathetic.)

I have to tell you my favorite moment from yesterday.  The dietitian showed up (have I mention how much I HATE dieticians?) and told me that she was worried about Averi's calorie intake.  Really, I thought puking added calories to your diet.  As she started into her spill about what I should be doing differently, I had to run over to the bed to catch several heaves of Averi's puke.

As I stood there cleaning up the mess, she had the nerve to come over to me, no not to ask if she could help, but to tell me that I should be giving Averi continuous feeds during the night so that we can get more calories into her.  I glared at her and explained that night time is the only time that Averi isn't puking, most likely because her stomach is empty, and I'm not going to take away her restful sleep just to get a few more calories in her.

Wait, here's the best part.  Then she said what all dietitians say, "Well, the final decision is up to the doctor, but I'm going to put in a request that she have continuous feeds at night."  That's great, except for one thing...the final decision is up to me, and it's not happening!

Here's my other pet peeve, since when is it normal to pump food into someone's stomach when they are nauseous and puking?  I'm pretty sure that if a person without a G-Tube were sick, no one would be shoving food down their throat while they were sleeping.  My philosophy is that if Averi won't take any food orally then I'm not pumping it into her either.

Thursday, January 27, 2011

More Puke

Today was a long, hard day.  Averi woke up this morning puking, fell asleep tonight puking, and filled the in between with, you guessed it, puking.

The zofran alone wasn't doing enough to stop the nausea so they started her on another drug called phenergan.  Once both of them got into her system, she was able to keep most of a meal down.  I told the nurses just to give the meds to her as soon as they are allowed.  Hopefully we will be able to stay on top of this.

At the end of the day one of the residents came in and asked me how many times Averi had thrown up today.  I just laughed...too many to count.

It's sad I know, but one of the times she threw up today was really funny (I have to laugh at something or I would go crazy).  The PT came in this morning and I told her that Averi had already thrown up twice but she said she would go really easy on her and decided to do therapy anyways.

A couple minutes into it Averi started getting really fussy (a sure sign that it's coming) and then puked while sitting in between the PT's legs.  I caught it with a washcloth but it totally freaked the PT out.  All I heard was, "Oh my goodness!" as she jumped back.  Once she got herself under control she was really sweet about helping me clean up but I had to bite my lip not to laugh at her. :)

The doctor said something today about it being okay if she doesn't eat much for the next week and that we could supplement it with IV nutrition if we had to.  How long does he think she is going to be puking?  That is definitely not a good sign.

I really hope she feels better soon.  When she's sick like this I feel the most helpless.  She looked so sad laying in her crib today that I decided to pick her up and snuggle with her in the chair.  Just moving her made her puke and I felt awful.  I just wish there was something more I could do.

Tuesday, January 25, 2011

The Nausea Begins, Again

I always feel like nothing exciting is going on with Averi, except sitting in a hospital room, and then I sit down to blog about the last few days and I have tons to say...so I apologize for any future long posts about 'nothing.'

The last few days have been pretty normal, you know for a 20 month old who has cancer (to name one of many medical issues) and lives at the hospital with one of her parents while the other one stays at home with her 4 year old sister.  While Dan was with Averi this weekend something amazing happened.  While laying on her stomach, Averi tried to get her knees up underneath herself.
video
I have visions of her learning to crawl one day.  This being said, I recently counted one of life's little blessings. Being at the hospital is hard enough, but can you imagine being trapped in a room with a crawling baby who tries to climb out of the crib or off the play mat onto the dirty hospital floor?  Maybe it's not so bad that Averi isn't mobile yet and doesn't know that there's a whole other world beyond the edges of the play mat.

After receiving Cycle 1, it took exactly a week for the nausea to kick in, this time it took only 5 days...yes, today is day 5.  Right after lunch Averi got really fussy and then lost her lunch, several times.  She doesn't really give much warning (which is the part that bugs me, not the cleaning it up) and for some reason my brain thought holding her over the floor was a good idea.  Several heaves later, my shoes and pants (up to my knees) were splattered with carrots.

My good friend Tanya who came to visit me today (she's been upgraded to 'good' after today) wiped up the puke while I cleaned up Averi and then took puke filled washcloths from me and replaced them with clean ones as Averi threw up 2 more times.  She also came up with the great idea to use the trash can instead of the floor. :)

After a short nap, the nurse started Averi on some Zofran and IV fluids (I think they learned their lesson from the hypovolemic shock trip to the PICU) and she has been fine since.  I'm not looking forward to tonight.  I never sleep well when Averi is pukey because I worry that she will puke before I wake up enough to hear it and roll around in it or choke on it or breath it into her lungs.  Gross, I know, but also scary.

Speaking of sleeping, Averi has decided the last few nights to fall asleep in some funny positions.She looks like such a poser with her hand tucked up under her chin.
Tonight was pretty cute too with her hands crossed over her chest and her mouth hanging open.  She looked like an old man taking his mid-morning snooze.  If only she were snoring.
Oh, Averi also has a weird raised rash all over her body that the doctors keep saying is a result of the chemo, even though she's never had this reaction before.  They finally gave her some cortizone cream for it but I hope it doesn't turn out to be something worse.  Hopefully we can have a medicine induced unexciting next few days!

Saturday, January 22, 2011

Bored or Sick?

Averi was super fidgety yesterday and kept wanting to be held and then not be held.  I assumed she was bored already and we went searching for something fun to do.

I had seen another baby using a car the last time we were here, but the sneaks kept it in their room so we never got a turn with it.  I was determined to find it, so we searched every community room with no luck.  Then one of the nurses told me about a secret hallway where they store some of the larger toys - and there it was.  Now guess who's keeping it in their room...hehehe!

Averi LOVED it!  We went for three 'walks' today, which consisted of walking in a circle around the floor and stopping to flirt with the male nurses at the desks.  At least I'm finally getting some exercise.
Last night was Dan's turn to stay with Averi.  He called me around 11:00 to tell me that Averi had a fever.  The nurse had taken it a couple times over the last hour and it was slowly working it's way up.  By midnight it peaked at 100.2.  Anything over 100.4 requires them to start her on antibiotics and take blood cultures.  It finally worked it's way back down by this morning, but I makes me feel bad that I thought she was just bored and she really didn't feel well.

Then, after dinner today, Averi threw up all over.  She used to give us a fair warning cough, but Dan said this one just happened...twice.  Her fever is still gone, but she's really mellow.  I thought she had a good week before she started getting sick.  Maybe she's just getting ti over with so she can feel better soon.

Did I mention I hate chemo?  It's just like her G-Tube, if it weren't keeping her alive, I'd stop it in a heartbeat.

Thursday, January 20, 2011

Cycle 3 Begins

I think I learn something new with each cycle that we start.  This time, it was to send an oncology nurse into the OR with Averi to be my eyes.  That is the one place that I cannot go with her in the hospital, even though we are there 24/7, and something always manages to go wrong while she's there.  Well not this time!

I called the oncology floor last night and asked the charge nurse to make arrangements for a nurse to accompany Averi into the OR.  She said that with our history, that wouldn't be a problem.  It was wonderful!  The nurse stayed with her from pre-op, to OR, to recovery, to the floor - and there were no complications or uncleaned IV's.

I always feel bad for Averi when we're in the pre-op room because she's so smiley and has no idea what's coming.  At least she got to enjoy a small part of her day.  Here's our mandatory pre-op picture. :)
The lumbar puncture went well.  She's always had to be intubated before but the anesthesiologist did an awesome job and only left a mask on her since it was such a short procedure and she was doing so well breathing.  This meant less recovery time and no sore throat!

Averi's been really clingy today, and cries every time I leave the room.  I think we were gone long enough that she forgot how this hospital living thing works.  Hopefully she will get back into her routine just in time for the chemo to kick in and make her sick. :(

Tuesday, January 18, 2011

2,934

Is that far enough above 1,000 for ya?

I took Averi in for more blood work and dressing and cap changes today, completely keeping my expectations at bay.  We went a little bit early so that I could get Flashes of Hope pictures taken of Kaili and Averi together.  By the way, they were adorable and I can't wait to get them back...all I'm going to say is tutus.

Anyways, the dressing change was really rough.  Averi's skin is starting to break down under the tape and was bleeding in spots.  The worse part is that they had to clean it with hard core alcohol before putting the new dressing on.  Did I also mention that it was past nap time?

The day ended well, though, when her doctor called me just a little bit ago and told me to "pick a number, any number."  Her ANC was almost 3,000.  I think we are cleared to start cycle 3. :)  She will call in the morning and schedule a time for Averi to go into the OR for her lumbar puncture and then be admitted to the floor.  We were all super excited for her to go back to the hospital and get sick again.

Tuesday, January 11, 2011

Down?

Aggghhh!!!!  We went in today with every expectation that Averi would be well over 1,000 and we would be admitted some time later this week.  Why have I still not learned that setting expectations will only lead to disappointment?

Not only was her ANC not at 1,000, but it had some how gone down to 648 (from 750 last week).  For some reason, a week is a good amount of time to wait for her counts to change, so we will go back in again next Tuesday.

The doctor assured me that it's not bad that her counts went down since they only went down a little, the rest of her counts are fine, and her platelets are normal all on their own (her original problem when she was first diagnosed).  She also explained, after loads of questioning, that she doesn't think it will take this long for Averi to recover after every cycle but that this cycle was harder on her than the other ones will be.  I asked how close to 1,000 she has to be to start the next cycle and the answer was 1,000, so there won't be any cut corners to start early.

I know how silly it must sound that I complain about wanting to go home and then complain about wanting to go back to the hospital, but I just want to be done with all this.  If she has to have treatments over the holidays then she should at least be able to enjoy the summer a little bit.

I feel like every week we spend waiting for Averi to recover is one more week this summer that we are stuck in the hospital and one more week added on to the '6 month treatment plan' we were originally given.  She hasn't even started cycle 3 and she's been going at it for over 3 months now.

My type A personality can't handle not having set dates.  If I knew we were going to be home for a month, at least I could prepare for it and make the most of it, even if I wasn't completely happy with it.  This week to week, never knowing what's going to happen next life style just might be the end of me.  So, once again, Aggghhhh!

In 'trying to make the most of our time at home' news, I might have taken Averi out in the snow for few minutes this weekend. :)  She LOVED it!
She wouldn't look up from the snow, so the only decent picture I could get required me laying on the ground.  Maybe next year she'll be allowed to experience it a little more.

Thursday, January 6, 2011

Wig

I felt sorry for Averi and her shiny, bald cancer head so I thought of a solution.  I think it works well.
Are you creeped out yet?  I'll wait for you to stop laughing...
We currently have one of the world's creepiest dolls in our possession (thank you Stephanie) which is the same size as Kaili and sports handmade clothes, blinking eyes, and a wig.  My sister-in-law thought that Averi's head might be the perfect size for the wig (notice how I'm not taking any credit for this) and it fit surprisingly well.
Averi even kept it on once I distracted her.  I'm pretty sure Averi's going to wear it into the hospital the next time she is admitted. =P

Wednesday, January 5, 2011

Blinking

Since everyone in the house has been wearing masks, Averi has been paying extra attention to eyes (oddly enough, she still knows when we smile).  My mom taught her this latest trick
video
Now when I try to feed her all she wants to do is blink at me.  It took me a while to figured out that it's because people are coming up behind me and blinking at her first. =P  Who knew blinking could be so cute?

Tuesday, January 4, 2011

Not Sick

Averi got to have her once-a-week outing to the hospital again today to see how her counts are doing.  After the usual fuss, we met with the doctor who looked her over and checked to make sure that everything was okay.

Surprisingly, Averi is doing really well.  I say surprisingly because two days after Averi came home, Kaili started throwing up.  The pediatrician said it was a 2 week stomach bug that is extremely contagious and put her on Zofran (now both my kids are druggies).  Luckily, Kaili is the sanitizer Nazi at our house and has been really good about wearing her mask all the time, cleaning her hands, and staying away from Averi.

I don't know if I'm glad she's sick while I'm home - because I'd have to be home with Kaili and find someone to sit with Averi at the hospital every day for two weeks - or extremely paranoid that Averi will get sick.  No matter what I want or think, we are half way through it and no one else has gotten sick.  Life does come with little miracles!
(Us pretending to do PT while we are at home.  I may or may not have ended this session by dropping her on her head.)

Averi's ANC came back at a whopping 750.  I figured she was moving up fast and that we'd be back in a couple of days to start cycle 3...nope.  We aren't going back until next Tuesday, a whole week.  While part of me is glad that we are guaranteed another week at home together, shouldn't her counts be at 1,000 way before next week?  I am so anxious to get this over with and move on with life.