Monday, August 22, 2011

Photo Fun - The Many Faces of David







Jazz Hands





Stupid Shoes


Criss Cross Applesauce

These Shoes are Coming Off

Fine I'll wear the shoes


I am so done with these shoes

So big......2 weeks post surgery

Tuesday, August 16, 2011

Update on Recovering at Home

Love playing with all my toys

 I still love playing with my feet

This is my new toy to encourage pulling up to stand, I am already trying to.  And I rock the piano.

This is what no sleep looks like.  No one told mommy that there could be some lack of sleep issues.  No naps for two days and only sleeping 6 hrs Saturday night and 3 hrs Sunday night.  I was good to mommy last night, I slept for 9 hours straight.  She still got up twice to feed me and give me medicine.

First day of Kindergarten.  Zac was totally ready for it and excited.

It was a great day except that mommy did not take him to his class.  I made him go to daycare first and ride the bus to school.  He was the only kindergartner who's mom didn't take him.  So I took him today and he didn't even wave good bye when we got to the play ground to drop him off.  I had to go tap him on the shoulder and say good bye.

Still trying to get into crawling, but it is faster to roll or butt scoot.

Happy as can be, not really that pale anymore but the lighting sucks in that room.

That's all for now.  We will update soon. Bye-bye from David

Saturday, August 13, 2011

Home is Where the Heart is

David got discharged from the hospital this morning and he is home where he belongs.  He is just like before he went to the hospital except his skin is now pink.  He scoots everywhere and prefers to sit up and play and babble versus being held and cuddled.

I am considering this time the next month or so as my maternity leave I was supposed to have.  His first maternity leave was 6 weeks in the NICU and then home on oxygen and monitors and ng feeding tube.  This time it is so much easier and he is a hell of a lot more fun than a baby (I am not really a fan of the baby stage).

The best thing about being home again is being home.  I love our house and hanging out with both my boys and my husband.  Hoping there might be dinner at the table soon, that isn't fast food (although that won't happen tonight).

Now what you all really want to know, but are afraid to ask....what does it really look like............................................

Not too bad, the zipper from the surgery.  The bullet hole on his left is from the chest tube.  The small bruising on either side was from the wires that were attached for an external pace maker.  And of course the cute little fabric thing with the stopper in the middle is his g-tube where he eats all of his meals.

That's all for tonight.  Time to enjoy my family.  More pics coming soon now that I am on "maternity" leave.  And once again thank you for the prayers and support, it was much appreciated.  Way to go Team David, it takes a village.............

Friday, August 12, 2011

Best Day Post OHS

The smile is back. 
He is off oxygen. 
He wears clothes. 
Mommy is thrilled. 

Thank you to all who prayed for us and kept us in your thoughts. 

Thursday, August 11, 2011

The Good, the Bad, the Ugly

The good was today. He was very stable. We removed the central line and a bad iv and they started a new iv. His oxygen was weaned a little and we worked hard on pain control.

The bad is watching him in pain. He is miserable and acts like he is jumping out of his skin. And his oxygen levels drop. Which leads me to the ugly....

The removal of the chest tube was visually upsetting but the 12 hour aftermath was worse. Watching him stat at 64 for a short amount of time while turning gray was the worst part of our recovery so far. It was only a few minutes but will last for a lifetime in my brain.

As usual life in any ICU is a roller coaster and this ride has had enough excitement for me and I am ready to get off.

Hoping tomorrow looks more like the attached photos than the images embedded in my mind.
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Wednesday, August 10, 2011

Another Amazing Day for David

They took him off the ventilator on Tuesday morning . He is now getting his oxygen through the nasal canula. Meds are being stopped slowly. And he is back to his regular feeding schedule. Still all through the g-tube.

Setbacks are always possible and we have had to go up on the oxygen and be a little less aggressive on weaning him off the oxygen.

He is more awake as they wean the happy drugs. He likes to kick his feet around and wave. His hands are tied down because he likes to pull tubes,wires, and oxygen.

He is slowly getting things removed. So far the rectal thermometer probe was the first to go, who even knew those exist. Then he got the catheter removed. His line into the artery was pulled today. Next up today will be the removal of the chest drain. And to change the dressing on the incision.

He is doing great. The hospital experience has been wonderful so far.

Thank you for the prayers and support.
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Tuesday, August 9, 2011

Recovering Like a Champ

Notice the cute horse bandage on his chest. He loves horses, picks them out of the toy bin at home.

He came off the nitric at 7 pm which means his pulmonary hypertension is not going crazy. They will turn off the vent in the morning. And he will most likely be on a nasal canula for his oxygen needs.

He is my miracle boy. Can't wait to get him home again.

Thank you to everyone around the world that prayed for our family. We felt surrounded by peace and love throughout the day.
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Monday, August 8, 2011

Out of surgery

Waiting to see him surgeon gave a good report. Repaired asd, vsd, mortal valve, tricuspid valve, and took a lung biopsy. Still on the vent.
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On Bi-pass

He is now on the heart lung bi-pass machine and they are repairing the heart.
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Surgery Has Started

David went to the operating room about 30 minutes ago. I feel very peaceful. I slept for about 5 hours last night. More to come throughout the day.
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Wednesday, August 3, 2011

Preparing for Open Heart Surgery Compares to Preparing for Childbirth

It just hit me recently while deciding what to pack for the hospital: clothes for me, clothes for the baby, camera, phone, charger, phone lists, change for the vending machine snacks for waiting, etc, that this experience is very similar to preparing for the birth of your child.  Sounds weird I know.

Seriously, at work I am finishing up all my tasks and assigning my projects.  I have delegated my calendar to someone else.  I will be setting my out of office for 8 weeks.  I had a little send off party.  I am going to lunch "for the last time" with some of my friends.

I research what to expect and read blogs to hear other peoples accounts of surgery.  How long did it take, were there complications, did you have a long hospital stay, how were the nurses, did you tour the hospital first.  Knowing our experience won't be exactly the same as other peoples but wanting to get a glimpse of what to expect.

We have to make arrangements for our other son. Thank god for daycare.  I am sure Steve and Zac will eat out a lot.  And I have a feeling someone will talk daddy into sleeping in our bed when I am at the hospital.

You discuss who will be in the waiting room, who will come visit in the hospital, who is on the call list, the email list, or we will just post on facebook.

It becomes harder to sleep at night.  Your mind wanders to the what ifs both good and bad.  And deep down you know all the preparing in the world won't really prepare you for the experience. But you have waited and prepared months for this moment, you knew it was coming you just didn't know when.

So the count down is now only 5 days until surgery.  Friday is our pre-op appointment, 2 hours of needles and machines.  Wish me luck and sanity as I make my way to Monday.