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Friday, October 17, 2014

Henry's Home from the Hospital!

After spending a week in the hospital after his ENT/GI procedure, Henry is home! 

His procedure was just as we expected: 
The gastroenterology team used a scope to look at his upper digestive system and found that everything looks great :)
The ENT team used a scope to look at his throat and saw that his tonsils and slightly-larger-than-normal adenoid gland were seriously blocking his airway while he was asleep. So his ENT doctor removed his adenoid and part of his tonsils (not a complete tonsillectomy because apparently that is considered risky in a kid his age), as well as some tissue from around his voice box in order to clear the obstruction. 
All the doctors involved said everything went smoothly. 

So the procedure itself was just what we were expecting, even hoping for. But everything leading up to the procedure and everything following it was totally not what we were expecting!

For starters, the procedure didn't even happen on Oct. 3rd as it had been scheduled! We made all our preparations, brought Henry down to the hospital, checked in, sat in the waiting room... and then we were told that an emergency case had come in unexpectedly and that now the surgery schedule had changed, and, more importantly, there would no longer be room for Henry in the pediatric ICU for his recovery post-surgery. So we got sent home!

He got rescheduled for the following week after James harassed  conveyed our concerns to Henry's doctors. So once again, we prepared for surgery day, dropped Calvin with our cousins, and brought Henry down to Lucille Packard Children's Hospital (LPCH) and this time the procedure actually did happen and it went smoothly. 

Henry in Pre-op with his daddy, waiting to be taken to anesthesia. 

I spent the first night in the ICU with Henry and it was a rough one. Poor little guy was very uncomfortable as he came off the anesthesia and felt the soreness in his throat. He was on pain meds and even a sedative. I could already hear that his breathing was much quieter while he was asleep, but the ICU nurses and doctors felt that he was still working too hard to breathe and they gave him oxygen support via a nasal cannula. 

We had been hoping/expecting to be discharged the next day... but when Henry was checked on by the pulmonologist (lung/respiratory specialist), she said that he would still need a BiPAP to support his breathing during sleep. This was a surprise for us. Based on talking with our ENT doctor, we had hoped/expected that the surgery would allow Henry to sleep safely without a CPAP or BiPAP machine. But the pulmonologist explained that although the surgery successfully cleared the obstructions in his airway (Yay!), Henry's hypotonia (low muscle tone) was still keeping him from breathing well enough without using too much energy when he's asleep (Boo). And he couldn't be sent home until there was a BiPAP set up at our apartment for him to use.

Here's our nugget Henry the day after surgery. He's sleeping with a BiPAP to help him breathe, he's hooked up to lots of monitors, and he's got a big sleeve on to keep him from pulling any of that stuff off. 

Getting that machine to our house was waaaaayyyy more complicated than we were prepared for. Good news was that the hospital case managers did all the work of consulting with our insurance and with the medical device suppliers that our insurance would pay for. Bad news was that it took a week to make it all happen! 

It's complicated and boring to explain why it took a week, but long story short, Henry spent a week in the hospital and James and I took turns spending the night with him. Calvin also spent his fair share of time hanging out at LPCH, playing with their awesome model train and meeting the therapy dogs that come around to visit the sick kids.

And visiting his brother...

Henry's recovery went well. After that first night, he no longer needed the serious pain meds and was fine on Tylenol and Motrin. He got lots of rest, and after a couple of days he showed us that he was getting his energy back. 

"I"m sitting up! I'm smiling!"

"What are all these wires for? Are these, like, important?? LOL!"

"I can go home now, right guys?? Right? Guys...?"

They kept him in the ICU for most of his stay, but finally on his last night he was moved to a regular room. 

Meanwhile, the hospital case managers got things sorted out and the medical device supplier sent someone over to set up the BiPAP equipment at our home. And finally Henry was discharged from the hospital!

Ready to go home from Hotel Hospital!

James and I are so glad to finally have Henry home and to not be taking turns sleeping in the hospital! We are adjusting to using the BiPAP for Henry. We were expecting a small machine with a mask attached... but it's a pretty big set-up. There's the machine itself with the tubing and the breathing mask, plus a small humidifier, plus a compressed oxygen machine, and then a back-up oxygen tank just in case. We are getting lots of support from the company that supplies the equipment. They will do several home visits over the next few weeks to make sure we are really comfortable using the machines and that the machines are working properly. 

Here's a pic of the machines. The blue box on top is the BiPAP ventilator itself. The small white box below it is the humidifier. The big black box under the desk is the compressed oxygen tank. In the corner behind the desk you can kind of see the handle of the extra oxygen tank.

Thank you to everyone who has been keeping Henry and our family in your thoughts and prayers. We are all doing just fine. We're very thankful that Henry's surgery went well. And though we were not super excited to spend a week at LPCH or to have all this medical equipment set up in our home, we are grateful to have the support Henry needs to sleep safe and sound.

1 comment:

  1. sleep well Henry! dream on! thanks dee for the post and the pics! what a sweet boy! love to all!!