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.