Cleft Palate Repair

Happy in pre-op

 Today was Jack Nathan's BIG surgery day!  We woke up bright dark and early to head South to Children's hospital.  He was the first case scheduled this morning, so that was helpful.  I don't think he had time to feel hungry.  

They took him back to surgery at 7 am sharp.  We got 3 update calls during the morning, all saying he was doing just fine.  The Doc finally came out to talk to us about 11:30 to say all went well, although his palate was very wide and difficult to repair.  He felt confident it will work great once all is healed!  Praise the Lord!

We made it to our room on the burn unit around 1 pm with a very tearful, sad little boy.  The staff has been great at keeping his Morphine coming as needed.  He has slept on and off all afternoon/evening, with a few tearful, wakeful spells.  He's getting breathing treatments to help him breathe easier due to all the swelling in and around his airway.  Apparently some kids have trouble with their airways after this surgery... so far so good for this tough guy!

Patrick headed home for the night and we are mostly tucked in until the next pain med is due.

Thanks for all of you who prayed for this little one.  He's been through a lot and has more to come in the future.  But it's all positive steps in the right direction!

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

Abby is 10 years old!

Abby is 10! from patty hull on Vimeo.


Dear sweet Abby,

Today we are humbled by the precious gift God has given us in you.  Even though you've never said a word, you have taught us so much about love and the secret treasures in life.  The Lord has shown us His faithfulness in the many struggles you have so bravely faced.

You have taught us how to trust... in the midst of so much uncertainty.  Most of all you have been such a JOY!  We enjoy caring for you, feeding you, holding you and dressing you in the pretty dresses Grandma makes just for you.  

We are so very proud of you.  Our hearts could burst from it!  You have endured more in your tender life than most do into old age.

This scripture verse has come to mind, especially in times where we have felt helpless to save you from the pain of life...

"The Lord your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."
Zephaniah 3:17

So many times we found peace in thinking of our Heavenly Father holding you in the palm of His hands... when we could not.

We love you darling girl!  Happy 10th Birthday.

Dad, Mom, Josiah, Levi and Jack

Real man's work

Boy's afternoon:

took chain saw on our farm and cut down big tree

Trip to Lowe's for hammer and safety gear

Lessons in serious hammering!