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.

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.

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… 

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!

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.

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.

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.

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.