Tuesday, June 28, 2011

Checking off the List

Averi's bone marrow biopsy and aspiration went very smoothly today.  Thankfully it is a very short procedure and the anesthesiologist was able to just put a mask on her instead of having to intubate.  That makes the recovery so much easier and faster since her throat is so flimsy to begin with and irritating it makes it really hard for her to breathe.  By the time she was brought back from recovery she was sitting up and acting like nothing had happened.

Now for the waiting.  The final results take a whole week to come back but the preliminary results take 2 days and if they look clean then we can go ahead and schedule a time for her central line to be taken out.  That means that if everything runs smoothly she could get her line out on Friday.  I know it's a long shot but it would be really nice to enjoy fourth of July weekend with a lot less worries.

Monday, June 27, 2011

Why the Drama?

The doctor called on Friday to let us know that Averi's bone marrow biopsy is scheduled for tomorrow.  The only stipulation is that we need to have her blood work done today to make sure her hemoglobin is over 10.  If not, then she needs to have a transfusion of red blood cells tonight before going to the OR in the morning.
(Enjoying some much needed sunshine!  She's pretty excited...)

After Friday's call I immediately called our home health nurse and asked her to come over in the morning to draw Averi's blood so that there would be enough time to have it processed and get a transfusion if needed.  She said she'd be here at 8:00.

By 10:00 I called to find out where she was and she said she never got the orders that I had faxed over...riiight.  Then she had to go see another patient.  Long story short, she showed up at 1:00 and left by 1:30 to drive 30 minutes to the lab that would then process it and send the results to our doctor who would then call us.  I guess she thought that left plenty of time for us to get a 2-3 hour transfusion if need be.

I've been left a little frustrated.  The good news is that Averi's hemoglobin came back at 10.2 so there was no need for a transfusion and we are good to go for tomorrow.  Why does everything have to be so dramatic?

Her ANC was 954, which means her marrow is continuing to improve and recover.  Hopefully everything goes well tomorrow and there are no more blasts.  For some reason I was super nervous about her last biopsy but since that one came back clear of any leukemic cells I don't really have any doubts about this one. After two more rounds of chemo it can't have gotten any worse.

Sunday, June 26, 2011

Now Don't Start That Again

Today was the big day, the first day with no antibiotics.  I was a hot mess!

Let me give you a refresher on what happened the last time we finished giving IV antibiotics at home.  The last dose was given on Thursday or Friday.  On Saturday afternoon we flushed her lines with saline and heparin to keep them from clotting.  Within an hour she was mottled, cold, had a fever, and projectile vomiting.

I did not want a repeat!  We decided to flush her line in the morning so that we could keep a close eye on her for a while before putting her in bed.  After a few hours I started feeling a little better, until I remembered that when she got poop in her caps the first time she didn’t show symptoms of being sick until a few days later.  Needless to say, I watched her like a hawk.

She was fine all day until right before bed.  Dan told me that she felt a little warm as he was laying her down and he decided to take her temperature.  It was 99.8.  Not quite a fever but not normal either.  Then he told me that he almost didn’t say anything because he didn’t want to worry me (good thing he rethought that one).

Now I can’t sleep and I have been checking her temperature every 30 minutes.  It has gone down a little and she is acting fine so I think I might try to get some sleep.  We’ll see how it goes… 

Saturday, June 25, 2011

Open Mouth, Insert Food

Now that Averi is feeling a little better and we are keeping her drugged up on zofran, she is eating orally.  This is a big deal since she has been nauseous for so long and was on IV fluids up until the day she was discharged.

I decided to give her a spoon and a bowl today to see what she would do.  I was VERY impressed!
video
She refused to hold the spoon any other way but at least the food was making it to her mouth.  Maybe this whole self feeding thing is going to be easier than I thought.

Tuesday, June 21, 2011

Come on Antibiotics

Today was our first visit back to the Clinic since coming home.  I was actually pretty glad because I had some concerns to voice to the doctor and I was curious how her blood work was doing.  Thankfully her ANC was in the 800's, so it is on it's way to recovery.
(Watching PBS while waiting on blood work.  Kaili was making sure Averi didn't fall off the chair.)

This morning was Averi's last dose of Flagyl, the antibiotic to treat her C. diff.  However, her IV antibiotics go until Saturday.  Remember how I told you that she got the C. diff in the first place because she was on antibiotics?  I told the doctor that it made no sense to me to stop treating the C. diff when she was still on other antibiotics that could just encourage her to get it again (once you have C. diff, your chances of getting it again go way up).  Thankfully she had no problem extending the Flagyl until the day after the IVs are done.

My other concern is the fact that one of the bacterias growing in Averi's blood is the exact same one that set up shop in her broviac line after doing IV antibiotics at home and ultimately led to her PICU stay.  The next steps for Averi are having a bone marrow biopsy and (if it's clear) getting her broviac out, hopefully sometime soon.  So I asked if we could extend her antibiotics until she had her broviac out so that there wouldn't be any chance of infection in the line.  She said no.

While she does understand my concerns, she said that we wouldn't do that if Averi was going to get another round of chemo and we just have to trust that the antibiotics are doing their job.  That didn't do much to make me feel better.  She did buffer my fears a little by scheduling more blood cultures to be taken when we come back next week, but the truth is that if Averi's going to get sick it's going to happen before we come back.

She's going to schedule the biopsy as soon as possible since Averi's ANC is closing in on 1,000 and then we can get the port out and be done with the sepsis worrying forever.

Saturday, June 18, 2011

Our Little Drug Addict

I’m starting to wonder if coming home was such a great idea (which is only said in jest because being home is always the best option!).  Averi has quite the medication regimen and we are missing the night nurses who used to noisily come in the room and give the meds for us. :)

Yesterday when we got home, the home nurse came and oriented us on giving Averi her IV antibiotics.  She was late, there were lots of silly papers to sign, and we already knew how to do it so it was a fun visit.

After she left I had to sit down and write out a med schedule so that we knew when all the ‘every 6 hours’ and ‘every 8 hours’ medicines were due.  That’s when I realized that Dan and I were going to have to take turns getting up all through the night in order to stay on track.  One of stayed up till 1:00 while the other one got up at 3:00.  Judging by how tired I am today, it’s going to be a long next few days.

Luckily the IV antibiotics don’t take quite as long to administer as the ones did back in October.  This is because one of them is in a vacuum bottle that slowly administers itself.  It is the coolest thing ever!
(You hook up the one on the left and the balloon slowly deflates over 30 minutes until it looks like the one on the right.)

Don’t worry, we only have to do this for another week.  After that there will be plenty of time for catching up on lost sleep.

Friday, June 17, 2011

Together at Last

Averi woke up with an ANC of 264 and negative blood cultures, and that meant we got to go HOME!!!  I can't believe the day has finally arrived.  Every day for almost the last month I have looked at this sign on our door and known that one day it would actually be meaningful.
 Today was the day we got to take that sign down, pack it up, and go home hopefully never to return.

There is a special tradition on the Hem/Onc floor that patients get to ring a bell announcing their final departure.  Dan took off work so that we could all be there as a family to declare our happy news.  It was a group effort to ring the bell, but then again so was the journey.
Ringing the bell was much more emotional for me than I thought it would be.  Living at the hospital has become our life and I teared up in sorrow for the friendships we are leaving behind just as much as I did for the joy of putting this all behind us.

So many people at the hospital have touched our lives during this journey and they all came to celebrate with us as the bell sang out our victory.  To say it was joyous doesn't even come close.

After ringing the bell, Averi took a short nap while I took out our cart load for the last time.  Then the moment finally came where I picked her up in my arms and carried her off the floor and out of the hospital like it was no big deal.  As we walked through the halls, the only visible signs of our time spent there were the mask on her face and her shiny bald head.
We are SO excited about being a family again.  There are still several steps left to take before this part of our lives is truly over, but at least we are one step closer to the finish line.

GI Jane

I decided a few months ago that I was no longer going to be upset that Averi isn't crawling because it makes living in the hospital a little bit easier.  She stays on the play mat and doesn't try to wander off onto the dirty floor.  So of course she would pick today, her final day in the hospital, to decide to learn how to crawl.
video
It may not be pretty to the untrained eye but to me it is absolutely beautiful!  She is getting on and off of her tummy correctly, alternating her arms and legs, and getting from point A to point B without crying.

This truly marks the beginning of a new and more exciting chapter in our lives.  The best part is that every single one of her therapists came at the same time to say goodbye today and they were all able to witness her success. It was very rewarding.  Little Averi has come such a long way and we are so proud of her!

Thursday, June 16, 2011

If it's Making You Sick Then it Must Be Working

We finally found the answer to Averi's puking woes - Flagyl.  The oral antibiotic that she's on to treat the C. diff can apparently cause nausea.  So why is it that no one has told us this until now?

The nurse today said that she had C. diff once and the flagyl made her extremely sick.  She didn't want to eat anything and really couldn't because everything (and then some) came right back up.  This explains a lot, like maybe why Averi puked another 2 times today and doesn't seem to be doing any better even with antibiotics on board.  Now we can stop worrying about what's causing her to be sick and stop trying to feed her so much until she's done with the Flagyl (which isn't any time soon).

The nurses have been very helpful today.  The night nurse came in with an even better solution for keeping Averi's central line caps clean.  She used a velcro-like sticker that is normally used to hold catheter lines on your leg.  It's wonderful!  Why someone didn't come up with this idea like say 8 months ago is beyond me.
Averi's just excited that she has one more thing stuck to her that she can pick at.

Her anc dropped a little, down to 230, but it is still above the 200 mark.  This means that if her cultures come back negative tomorrow and her counts don't drop at all...she'll be able to go home tomorrow.  I'm trying really hard not to get my hopes up and jinx it.

Wednesday, June 15, 2011

E. Coli Blood

It wasn't a contaminate.  Monday's cultures came back growing E.coli and another gram negative bacteria.  Hmmm, I wonder how E. coli could have found it's way into Averi's blood.  Oh, maybe it was from when she got C. diff poo all over her central line caps.  I dunno.

I tried giving Averi a half volume tube feed this morning, since she was doing better eating last night, but it just all came back up.  I can't figure out what's causing it.  It's too late to be from the chemo or the 24 hour stomach bug we all had and the C.diff should pretty much be under control.  Who knows?

Surprisingly Averi's ANC is up to 312 and even though she is nowhere near feeling great the doctors said she can go home when her blood cultures start coming back negative (showing that the antibiotics are working).  This is great news since we are coming up on our three and a half week mark and I am pretty much done with all this drama.

Tuesday, June 14, 2011

Not so Glorious

Averi's ANC only stayed at 0 for one day and is on it's way back up at a whopping 144 today.  While I'm glad that she's making a recovery I can only wonder how long they will keep her here since she has so many other things going on.

Fortunately the antibiotics are starting to kick in and by this evening her appetite was slowly coming back.  She even ate some baby food and freeze dried fruit pieces.

As it turns out, her blood cultures came back positive for gram negative rods.  Of course they did.  It's not like she has enough going on right now.  So they added yet another antibiotic to her regimen, making it a total of 4.  I really hope this is just a contaminant that was on the edge of her line after she pooped on it and it didn't really get into her blood.

I had a sad realization today.  I found out that if her ANC gets high enough Averi can be discharged while she is being treated for C. diff (which is a total of 10 days).  While this could be sooner than later depending on what her blood cultures say, it also means that she won't be allowed out of her room anymore while we are here.

This is her last treatment and she can't even roam the halls having her last hoorah and saying her goodbyes.  This is not how it's supposed to end.  It's supposed to be more glorious and happy and carefree.

Monday, June 13, 2011

Good News and Bad News

The good news is that Averi's ANC finally reached 0 today!!!  This is the last time she ever has to go that low.  Now all she can do is go back up.

The bad news is that she is refusing to eat anything and has a fever of 103.  This means drawing more blood cultures and starting her on more antibiotics.  This seems silly to me given the fact that she has C. diff because of being on antibiotics but the doctors assure me that it will not affect the C. diff treatment.  Hopefully the fever is just from the C. diff and not another infection.

Sunday, June 12, 2011

Don't Fall Down

Averi seemed to be doing a little better today so Dan fed her some baby food.  By the time he left at the end of the day and I tried to feed her she puked all over.

Of course she had just gotten her oral medication to treat the C.diff so the nurse had to give it to her again.  I don't quite understand why they are giving her an oral med when they know she's nauseous and she has a central line.  I've been told that the oral works better since it is actually going through her GI tract instead of just into her blood, but if it's not staying in her system long enough to go through then what's the point?

On top of that, the C. diff isn't just a stinky, watery poo.  It's causing severe abdominal cramping, fever, and loss of appetite.  Trust me when I say it makes for one very unhappy baby.

Then, while hanging out as a family tonight, I watched in slow motion as Averi fell over backwards out of the recliner (while snuggling with big sister) and hit her head on the bottom of the IV pole.  She cried for a while and has a dent on the back of her head that is sure to be an awesome bruise tomorrow.

By the time I put her to bed she was acting completely normal but the doctors insist that she have a neurological exam every 4 hours.  This consists of waking my sick, pathetic baby to shine a light in her eyes - every 4 hours all night long.  Who knows when she'll ever be allowed a good night's sleep.

Saturday, June 11, 2011

C. difficile

I often wish that Averi could talk, sometimes it's because she's 2 years old and hasn't even said her first word yet, but mostly I wish that she could tell me what hurts and how she's feeling during all this chemo crap.

The puking has not subsided.  In fact it has spread from Kaili to Dan and to me.  Fortunately I set up for a constant to sit with Averi yesterday so I could stay home with Kaili because I woke up running for the toilet and immediately left.  Averi puked after PT and laid around for most of the day.

It has continued through today and we've had to stop her feeds altogether again.  Just when I thought we were going to get rid of her IV fluids we are back to square one.  I wish she could tell me if she is feeling chemo nauseous or stomach bug sick.  I wish she could tell me if her stomach hurts from intestinal cramping or just a lack of appetite.

As she has continued to pour fluids out of both ends, Dan came up with a better solution than my mega diaper:
He wrapped her caps in plastic bags and taped them shut.  This works quite well, except when the poor nurse has to access the lines to draw blood or give meds. :)

Just as today was drawing to a close, the nurse came in to inform us that the C. diff tests came back positive. Super!  Now she has been put on an oral antibiotic.  The ironic thing is that Averi most likely got C. diff because the broad spectrum antibiotics she was on to treat her previous line infection also killed off the healthy bacteria in her GI tract, allowing the C. diff to take over.  One thing just seems to lead to the next.

Thursday, June 9, 2011

Bodily Fluids

This morning the doctors decided to order a sample of Averi's poop to be tested for C. difficile, a bacteria that lives in the intestines and can cause stinky diarrhea.  It is a nasty bug that is highly contagious so until the test results come back Averi has been put on restrictions that she cannot leave the room and everyone who comes in must wear a gown and gloves.

I kindly informed them that since they now wanted her to poop she wasn't going to.  And I was right...for a little while.

Ever since she started throwing up last week we have slowly been increasing Averi's feeds.  She has been tolerating them quite nicely and today was her first time back on full volume feeds.  She did wonderfully all morning.

After putting her down for a nap I went to get lunch and returned to find her sitting up in her bed.  Annoyed that she was awake after such a late night last night, I walked closer to find that she was covered in vomit and diarrhea.  I instantly changed from annoyed to panicked.

The good news is that we were able to get her stool sample.  The bad news is that we have to cut back on her feeds again.

As the day progressed, Averi continued to get more irritable and fussy.  She would be perfectly fine and then start crying out in agony, unable to be consoled.  The doctor came in to look at her and said that irritable bowels can contract at uncoordinated times causing sudden spurts of cramping.  She ordered some IBS medication for Averi and surprisingly some Tylenol.

Then to top it off, right after the doctor left Kaili threw up all over the floor in the bathroom.  Yes, there was germy puke all over my immunodeficient daughter's room with no way to open windows or doors to air it out.  I have literally cleaned up smelly bodily fluids all day long!  (and you guys ask why I don't want to be a nurse when this is all said and done)  Dan wasn't feeling well either so I sent them all home and put Averi to bed as soon as the Tylenol kicked in.

Wednesday, June 8, 2011

I Got the Poo on Me!

Apparently we can't quite find the right balance of Colace and Milk of Magnesia to give Averi.  The poor thing is either screaming to get rabbit pellets out or finger painting.  Tonight it was the latter, again.  It's kind of like deja vu from when Dan was here last weekend.

Right after everyone left to go home Averi had a massive explosion.  I changed her clothes and the bed and wiped down her tubes.  Just as I was finishing up and getting ready to put her to sleep it happened again.  To save you all the gory details, let's just say that she went through 4 outfits in less than 2 hours.

It was everywhere!  Of course it wasn't exciting enough to just get poop on some things, oh no, she had to get it under her central line caps again.  This time the nurse had the pleasure of changing her poopie caps and then drawing more cultures to make sure that nothing got into her blood stream.

By the time we were done with all that Averi was exhausted and past ready for bed.  Worried that she would explode again during the night I came up with an awesome solution:
It consists of one size 3 diaper covered by one size 6 diaper wrapped in two washcloths.  Oh, and did I mention that the only pajamas left for her to wear are the ones that don't have snaps down the legs?  It's gunna be a lot of fun getting into that hot mess tonight for diaper changes.

Tuesday, June 7, 2011

Shaving?

Averi gets several therapies several times a week.  Most of them require work and may not be deemed as 'fun.'  Therapeutic Recreation is the exception.  I'm still not completely sure why it's considered a therapy but it's a lot of fun and Averi usually enjoys it, especially with the person on our floor, Mary.

The last time Mary did something messy with us it involved finger paints and Averi wasn't too thrilled about having the slimy goo on her hands.  We gave her a paint brush and the problem was solved.  I think between me being such a neat person and Averi not being able to take baths or touch anything that might get on her dressing/caps, she's not too fond of messes.

Today we tried something less slimy - shaving cream.  We didn't know how Averi would respond so we started out slow...
 She LOVED it!
By the end she was covered in it.
The best part was that it just washed right off with a wet washcloth.  We will definitely be doing this again.

Monday, June 6, 2011

Thanks Great Grandma

Last cycle, Averi only needed one transfusion each of platelets and red blood cells.  Well today she doubled that.

Last night I mentioned to Dan that she was looking pale and that she might need some red blood soon.  When we got up this morning I was informed that her hemoglobin was low and she would be receiving some red blood.  Is it sad that I can read the signs of needing a blood transfusion?

I was actually kind of glad that she needed some more blood because great grandma has donated blood twice for Averi and last time she didn't end up using it and this time the blood hadn't been processed when Averi needed it last week.  After all that trouble I was grateful that Averi finally got to use great grandma's precious gift (and so was Averi)!

This afternoon great grandma and grandpa offered to hang out with Averi while I took Kaili out for some fun. Unfortunately, they had to experience Averi's worst dressing change EVER.

I don't know if I've ever explained it, but there is a sterile dressing that covers the area where Averi's central line enters her chest.  It has to remain sterile to prevent any infections from entering her blood stream and is changed at least every 7 days.  Changing it requires everyone wearing masks, gowns, and gloves.  The old dressing is removed, the site is thoroughly cleaned and allowed to dry, the area is covered with a skin protector that also has to dry, the line is taped down in a loop to prevent it from being pulled out if there is any tension on the line, and finally a new sterile dressing is placed over the site.

All of this has to be done without anything touching the site or contaminating it.  Try doing that to a 2 year old and you will understand why it is a two person job and why we have to pin Averi down to the crib to prevent her from pulling off her mask or touching her chest.  Fortunately, it usually only takes about 5 minutes.

Today's particular dressing change did't go quite as smoothly as it normally does.  Just as the nurse was getting ready to put the new dressing on, Averi, who was already not cooperating as much as usual because she didn't feel well, pulled her arm loose and brushed it across her chest.  She then had to be held down while the nurse went and got a new dressing change kit and redid the entire process.

Averi screamed the entire time (I don't know if it was more traumatic for Averi or my poor grandparents).  When I got back this afternoon I noticed that Averi had petechiae (red dots of broken blood vessels) all over her face and head.  We finally decided it was from the intense amount of screaming and straining she did during the dressing change.

Petechiae are due to low platelet counts but because that was the symptom that led us to having her blood checked and ultimately finding out that she had cancer it just sends up a red flag for me.  I had the doctor come in and requested that she have some more platelets.  He said that even though she just had some yesterday she was getting low again (obviously) and they were going to wait until tomorrow to give her some more but that they could do it tonight if I wanted.  I made sure she got the platelets tonight.

Sunday, June 5, 2011

The Storm has Arrived

Averi started puking last night and it has continued throughout the day.  The ironic thing is that we finally know how to best help her when she's nauseous and this is the last time it will matter.

Treating her went surprisingly well today.  I told the nurse I was going to stop all feeds (especially tube feeds since it is incredibly mean to pump someone's stomach full of food when they are sick) and that we needed to start some IV fluids.  She was doubtful but asked the doctor anyways.  Apparently the resident asked her if that's what the parents wanted, and if so then she should do it.  I had to laugh when I heard that.  I guess we have finally earned some degree of respect around here.
(A few days ago, during happier times.)

We also had them start her on the zofran and phenergan.  And guess what - she's over 2 now so they finally gave her her the okay to use IV phenergan.  You know, the one that actually does something because it doesn't immediately get puked back up.  It has been working like a charm and she has been sleeping really well.

She did need platelets today, which is just another sign that her body is responding to the chemo.  Hopefully the yucks don't last too long so that we can go back outside again soon.

Friday, June 3, 2011

Unnervingly Calm

I feel like we are sitting in the calm before the storm.  Usually Averi is nauseous by now and the up-all-nights have started.  She has been great all week.  Other than finishing her antibiotics today, nothing much really happened.  I'm not complaining, but the anticipation is killing me.
(My two favorite baldies!  Great grandma and grandpa have been here helping us out.)

I spoke to Averi's PT this week and let her know that I'd rather not just skip crawling altogether.  She has been working on standing and pulling-to-stand, since it is more age appropriate, but I really feel that there are certain connections that happen in your brain when you learn to alternate your arms and legs when crawling.  She said she had no problem with that and had OT come in with her today so that they could work on crawling.

It went surprisingly well.  She is still doing more of an inchworm motion, but she was getting from one side of the play mat to the other repeatedly...without complaint.  The fact that she wasn't crying the whole time was the true miracle.  If she's tolerating it then we are definitely moving in the right direction.

Thursday, June 2, 2011

Fresh Air

Averi's morning play times are becoming something of a habit.  Luckily, there hasn't been any more poop involved since we decided to keep her in onesies, but it's still really early.  Yesterday I decided that something needed to be done about our east facing window with broken blinds - so I taped a blanket over the window.  Of course I was retaping it at 4:00 this morning, but it seemed to help. :)

Now that Averi isn't attached to any chemo and she doesn't have a fever and she's not feeling nauseous, we decided to be adventurous today.  We went outside!
There is a playground on the roof of the third floor that patients are allowed to use (if they meet the above criteria) and for the first time since starting chemo in October, Averi was able to use it.  Of course it was too cold to use during the winter, and the few times the playground wasn't covered in snow there was some other reason Averi couldn't go.
She loved it!  We took a blanket to sit on and toys to play with (since everything out there was way too germy) and just soaked up the sun.  We only lasted 15 minutes before her pale and fragile skin started to turn red, but the fresh air was SO worth it!