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?

doctors and teachers and cookies...oh my!

On Friday, we had an appointment with Dr. H, Super Dude's surgeon at Duke.  In case we haven't mentioned it lately, we LOVE Dr. H.  He was instrumental in saving Dude's life - he performed Dude's primary diaphragm repair and the intestinal containment surgeries.  When we were on the brink of consenting to Dude getting a G-tube because of his feeding problems, Dr. H encouraged us to wait and give the Dude a little more time; he was right and saved the Dude from an unnecessary surgery.  It had been a year since we last saw Dr. H, so the visit was bittersweet.  

He thinks that Super Dude looks great and couldn't believe how tall he'd grown.  We've known the next surgery was necessary, so this appointment was short and sweet.  He told us what he'd do, we signed the consent forms and then he sent us to pre-op to get all of that done.  Dr. H was very amenable to having the ENT insert ear tubes during the surgery and said he'd contact the ENT to coordinate their schedules.  Now, we're just waiting on the phone call to tell us when to show up!  This surgery will last 2-3 hours and will involve creating an incision at the end of the last incision/scar, which will wrap around toward Super Dude's back and be about 3 inches long.  He'll be admitted and we're asking that people not visit as only 2 people are permitted in the room and that only leaves room for mommy & daddy!

After the surgical appointment, we had our first parent-teacher conference at Dude's preschool.  His teachers said they adore him and that he's a wonderful child.  He has a best bud in his class, and apparently the two can just look at each other and burst out in laughter.  The teachers gave us some tips on potty-training, which we hope to work on soon at home.  The only issue they have with Super Dude is that he sometimes steals food from his classmates at lunch.  I find this hysterical since he was tube-fed the first year of life, and we tried so hard, for so long, to just get him to eat ANYTHING!  

Tonight we made cookies and I let Super Dude help put the cookie dough on the cookie sheet.  I turned around to check the oven for a quick second and when I turned back around, the Dude was in the same exact spot, but there was a cookie on the sheet with a bite taken out of it!  Sneaky little monkey!

did you say something?

Age:  2 years, 5 months
Height: 36" (50th %)
Weight: 13 kilos (40th %)
O2: 99%

We were thrilled to see those numbers today!  I can't believe how well and how quickly he bounced back from that nasty GI bug he had.

In February, at a routine Audiology follow-up, Super Dude was diagnosed with significant hearing loss.  [As a side note, it is recommended that CDH kiddos have their hearing screened frequently until age 3 because of the risk of late-onset sensorineural hearing loss related to diuretics, mechanical ventilation and high-frequency oscillation]  Luckily, SD's hearing loss is conductive, meaning that he has a problem conducting sound waves, which, for him, is caused by fluid accumulation in the middle ear.  SD's (fantastically wonderful) Pediatrician, Dr. B, referred him to an ENT, so that we can solve this problem before it further delays his speech.

The ENT quickly confirmed that: (1) SD's eardrums do not respond to sound at all, (2) he can not hear anything below normal conversation and what he does hear, he hears as if he's under water, (3) his hearing remains unchanged since the Audiology report in February, and (4) that he needs tubes.  Dr. ENT mentioned that reflux can add to the fluid build-up in the ears and gave us some pointers on how to reduce those effects. The tubes should also help SD sleep more soundly and breathe easier.  It's amazing how related everything is inside the body!

She is willing to perform this surgery in conjunction with SD's abdominal wall hernia repair surgery that we had planned for late summer, but she doesn't want to wait that long before putting the tubes in.  So, we have moved up the surgical consult with Dr. H to next week in an effort to convince beg Dr. H to allow the ENT to insert tubes during his repair surgery.  We'd really prefer to only have SD under anesthesia and breathing-tube placement once, but if Dr. H (whom we literally trust with our child's life) doesn't think it's a good idea, we will be planning two surgeries for this summer.

We'll update more once we know more, but we'd appreciate any happy thoughts you can send his way!

Big boy sitting in the ENT chair!

For more info on tubes, click HERE