Saturday, June 25, 2011

just like daddy

This is hubs, when he was a wee-one.  When I asked Super Dude who it was, he said "Me!"

And here's Super Dude wearing a hat I found in the attic.

Wednesday, June 15, 2011

football sticker

Before we left for the hospital on Monday morning, Super Dude was playing with stickers and when we arrived, he was wearing a small football sticker on his hand.  During pre-op, the anesthesiologist noted that the football was perfectly placed on a juicy vein and we joked around about how the dude was just trying to help him out.

When the nurse came to remove the dude's IV today, she removed the dressing and guess what was under the dressing, sitting atop the IV?  The football sticker!  (yes, there was another layer of sterile dressing between the sticker and the actual IV)  I guess the anesthesiologist got the last laugh :)

super dude amazes again

"Courage is being scared to death...and saddling up anyway." - John Wayne

Super Dude is the bravest little dude I know.  He had surgery this week to repair an abdominal muscle, to have ear tubes inserted, and to have a bronchoscopy and laryngoscopy.  2 days later, he was discharged from the hospital because he was doing so well! We've been delaying this surgery because we were terrified.  After everything SD has been through, we did not want to see him in any more pain.  When he was an infant, he didn't understand what was going on, but this time, it was different.

When SD was an infant, Dr. H repaired his diaphragm by taking several layers of the abdominal wall and creating a diaphragm (remember, he was born with a congenital diaphragmatic hernia).  Over time, the abdomen began to really poke out and we thought he had a hernia in the weakened muscle.  Well, it turns out that the muscle had become paralyzed, not herniated. Dr. H, the pediatric surgeon who has done all of SD's other surgeries, performed this repair, which lasted just over 2 hours.  The care we received, once again, at this amazing Children's Hospital was the best.

Pre-op: He was so sweet and brave. The nurses gave him some bubbles and let him blow them in the exam room.  Dr. H even joined in the fun and tried to catch bubbles with Super Dude! I went back to the OR with him and as he was breathing in the anesthesia, he started giggling and flirting with the nurse.  The hubs didn't go because only one parent was allowed and I jumped into the "bunny suit" before he could.  [You may recognize "monkey" in this picture.  He's been SD's side kick since he was born.  He watched over SD when he was in the NICU and on ECMO.  We certainly didn't let monkey miss out on this one - he even went back to the OR with Super Dude.]

 Post-op: When we were finally called back to the PACU, the nurse was very concerned and said he was having a rough time.  He was desatting (his O2 was dipping into the 40s) because of the pain.  They couldn't give him pain meds until he maintained 95% O2 so we had to get him to calm down.  After about 30 minutes of holding him and singing to him, he finally drifted off to sleep and we were able to get him some relief. 

That first night was hard.  None of us got much sleep.  It was very difficult to get his pain under control so he would clench down and hold his breath, desat and then turn purple.  He was so pitiful and whined most of the night.  This is how we slept, frozen, because he wouldn't move.  Around 4am, he woke up and said "monkey's crying" in this soft, sweet little voice and then went back to sleep.  I think the medicine was talking. The respiratory therapist he had that first night happened to also be the RT who put Super Dude on ECMO and he was absolutely amazed by how well he has been doing.

 Post-op Day 1: Once we got his pain under control, the hubs got SD up and moving about.  Having an occupational therapist for a hubs is a great advantage ;)  The dude was terrified to move, but he saddled up and did everything we asked.  In no time, he was walking the halls.  We went to the play room in the Children's Hospital and he colored a picture, which he gave to his nurse when we returned to the room. Several of his nurses and Neonatologists from his NICU stay stopped by to check on him.  

This face brought to you by oxycodone.

The hubs brought out the bubbles which SD thought was hilarious!

Post-op Day 2: He scarfed down a whole bowl of cheerios and a container of apple sauce for breakfast.  When surgery rounded they were amazed by his turn-around and said we could go home if we were comfortable doing so.  Home?!?!  2 days after major abdominal surgery?  

And this is Super Dude, post-op day 2 after we got home!  Look at that smile.  The most amazing this is, when asked "Do you still love Dr. H?" he says "Yep!"

Thank you to our family, friends and strangers who supported us during this.  I can't believe how many people love our dude and it's very touching.  Who knew that someone so small can have such a large impact?