Recovering

Abby has had a few GOOD days!  Praise the Lord.  She is Sleeping at night and having awake times during the day when she is Content!!  This is huge.

Since Tuesday was so rough for her, we are still giving extra seizure meds until she has her VNS activated.  This seems to be helping.  Thursday morning we go to have it turned on!  

Praying this next step will give her more seizure relief and allow us to come down on some of her medications.

Today we are having a Girl's-Chill-Out morning!  Daddy took the boys to church and we are having a quiet morning together.  So nice.

You can see her "caterpillar scar" as Josiah calls it… one of two incisions.

VNS replacement surgery

Yesterday Abby had her Vagal Nerve Stimulator replaced.  

Surgery #… we've lost count.  Somewhere close to 20. 

We found out it was broken at a routine neurology check up… ironically, also the day she had her status (very long, can't be stopped at home) seizure in September.  

The surgeon was concerned it might be difficult to remove all the coils around her nerve.  Sometimes scar tissue gets entangled with the equipment, making it almost impossible to cleanly and safely remove it.  Thankfully he was able to free the nerve and remove all of the old VNS and leads!  Now she has an upgraded VNS, complete with new technology and a brand new battery.

The first one lasted almost seven years, which was pretty good I've been told.

First VNS implant… 4 years old

2007

2007-  She's grown so much since then!

The past month has been hard on Abby.  Her seizures have been very hard to control.  We've stopped medication, added meds, adjusted doses and spread them out over the day in hopes of keeping the seizures to a minimum.  

During the process she has gotten her days and nights confused, awake at 2 am but sleeping most of the morning.  It's been frustrating to say the least.  Not to mention the seizures.  We know now how much the VNS was helping her!  She started having the old myoclonic (looks like a startle) seizures again, hundreds a day.  She has been so upset by them!  I can only imagine.

She did well in surgery!  They kept her in recovery an extra hour due to her erratic heart rate.  One minute it was uncomfortably low, the next jumping above 120's.  Her nurse was very attentive and didn't take us to the floor until she was comfortable with everything.  

In recovery

Today has been rough.  She started having seizures in the middle of the night and has continued the pattern through today.  I've been on the phone with the surgeon's office and the neurologist.  After over 15 bigger seizures today we finally resorted to giving her emergency medication tonight.  No fun.

Hoping we don't have to take a trip to the ER.

Going home!

Home again

We enjoyed a relaxing afternoon at home as a family watching the ball game.  It was like a breath of fresh air!

Abby is tucked into the "sick bed" in our bedroom for the night with Tylenol on board for her fever.  We can tell she is happy to be home... no more monitor wires, IV's or probes.

PICU souvenir:  Bipap mask

Activity for bored football fans

Pneumonia- Day 5

Stats this morning:

Heart rate 103
O2 sats 98% on room air
BP 87/49
Temp 98.6  (whoohoo!!)

She's awake and practically back to her normal self.  Had a good night.  Her temp actually dipped really low during the night and they turned on the heating lights above her bed... go figure.

Hopefully we will head home today!  

It will be so nice to sleep in my own bed.  This pull out couch is getting harder every night!  I miss my family.

Thanks for all the prayers and concern for our sweet girl.  She's a trooper!

Pneumonia- day 4

Stats this morning:

O2 sat 91% on room air
Heart rate 100
BP 93/47
Temp 103

Last night was restless with lots of coughing.  Tummy trouble from the antibiotics.  Feeling yuck from continued fever.

Plan was to go home today... because of the high fever the doc wants to run a respiratory panel of tests to see if she might have RSV or flu.  

Now the plan is to stay in PICU and continue to monitor her breathing and O2 needs, continue IV antibiotics and run some blood tests.  

Abby isn't as awake and alert as she was Wednesday.  Now she's very sleepy and acting more sick.

One praise is that she still has an IV that is working!!  They stuck her more times than I could count in ER and finally had to put in an IO (intraosseous line- in her leg bone).  They did eventually get a peripheral line in and IT'S STILL WORKING.   

Pneumonia continued...

Stats this morning:

O2 sats 99% on room air with high flow cannula pressure of 8
Heart rate: 100
BP: 93/43
Temp: 101.7

Sleeping

The plan for today is to wean her off the high flow nasal cannula and watch her sats and breathing effort over night.  Rocephin stopped as of this morning.  Clindamycin continued IV.  She'll go home on an oral form of the same.

She's enjoying her chest PT... a large vest that inflates and vibrates for 20 minutes every 4 hours.  The purpose is to break up the mucus in her lungs so it can be coughed (or suctioned) out.

Sweet girl is weathering this hospital stay like a champ... and winning the hearts of everyone caring for her.  Typical Abby

"We know that the whole creation has been groaning as in the pains of childbirth right up to the present time.  Not only so, but we ourselves, who have the first fruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the REDEMPTION of our bodies.  For in this hope we were saved."

Romans 8:22-24

Pneumonia

X-rays yesterday revealed pneumonia, explaining the continued high fever.  They were finally able to take her off Bipap yesterday around noon and onto high flow oxygen.  She's getting the big gun antibiotics, chest pounding and suctioning from our friends in respiratory therapy.  Two big guys with tender hearts for sick kids... they've been good comic relief.

This morning she is grunting a little with her breathing, but saturating great without oxygen.  There is talk of putting her on nasal cannula to help give a little forced oxygen into her lungs, just to help her lungs stay inflated.

She looks much better and is more awake and alert today.

Thank you for praying!

A faithful friend... 

enjoying a special picture from her brothers

Seizures in September

stabilized in the ER

It's been 19 months since Abby's last status (prolonged) seizure.  

Yesterday's seizure came out of the blue.  No signs of illness.  Just a sudden high fever.  

She is tucked into RM 2 in PICU on a Bipap machine (positive airway pressure).  I'm really hoping she doesn't develop pneumonia.  Fever is still high.

snuggled up with a new friend