It's been a very hectic few days.
We're still at the hospital.
The surgery itself went well. The day started fairly well. Robbie wasn't too cranky about having not been fed and actually slept for a while in the preop holding area.
I did okay letting strangers take him only choking up a bit after they disappeared down the hall.
Our surgeon was pleased with how things went. He had plenty of tissue to work with and said he secured it a little extra to hopefully make sure it would stay put this time. It took about 90 minutes, just as he had expected. Robbie was off the vent before leaving the O.R.
I asked about pain management and he said probably just Tylenol.
The real trouble began in the recovery room.
They'd wrapped him up in warm blankets after the surgery and he got too hot. When they lead us back to see him, he was flushed and his temperature was about 101.
That earned him a Tylenol suppository. I got a cool cloth and dabbed at him while David fanned him. He finally cooled down enough to be transported to the PICU. He still hadn't stopped crying. He was grunting in pain with every breath.
Obviously Tylenol wasn't doing the trick.
Our day nurse was lovely and called for the staff pediatrician right away. He thought perhaps the transport had upset him. He wanted to give him a little time to settle in before doing anything.
Half an hour later, he was still very much in pain. The nurse called for the dotor again.
He agreed to a dose of Fentanyl. The helped for about 15 minutes.
The nurse got the okay for another dose of Fentanyl- stronger this time.
That helped about 20 minutes.
The rest of the time was filled with Robbie crying. It varied between a low whine to a full out wail but nothing soothed him. Even touching him made him scream in pain so I couldn't hold him to try to calm him down. My heart broke.
Finally they paged the surgeon.
Dr. Coln came to look at him and agreed he was definitely uncomfortable. He wrote an order for morphine. It works slower but lasts longer.
That began a night of morphine every 2 hours.
That eased his pain so that he was quiet longer and cried less, but at best it was still a 10 minute cycle.
Then he went 8 hours without any urine output. At the same time, Robbie was beginning to seem more and more uncomfortable in his tummy. I put his feeding tube in to vent it. You can hold it up and let the gas escape. A lot did, but with it bubbled up all the food he'd consumed since the surgery.
The pediatrician got paged again. He was now NPO (nothing by mouth- no food) and they upped his IV.
In the middle of this, every time the crying would increase, his temperature would rise again. I get cold when I don't feel good. I think Robbie must get hot.
After another 3 hours, he'd finally peed a little. Just enough to save him from a catheter, but not enough to satisfy them. So he got a large saline bolus.
Finally about 3am, he started to settle a bit.
I laid in the recliner (no sleeping arrangements are made for the parents in the PICU) and tried to catch a few winks.
Around 6, the nurse changed his diaper and he'd finally had a decent output. And he was resting comfortably enough that she didn't give him that dose of morphine.
They drew some labs to make sure his electrolytes, fluids and blood levels were okay.
About 10am, they tried to give him a dose of Tylenol. They closed off his vented feeding tube to let it process but 45 minutes later, it came straight back out the feeding tube again. His guts still weren't working.
The labs came back normal. The granted us the blessing of being moved from the PICU to the regular peds floor. I'm not sure it made any difference to Robbie, but it was certainly better for me.
The PICU not only didn't have so much as a couch to lay on, but they also don't have bathrooms. I was having to use a public waiting room restroom two hallways over. Not exactly family friendly.
The new room felt like moving into the President's Suite by comparison. Our own bathroom, much more room, a TV, mini fridge and a fold out couch to sleep on.
The best part is that Robbie's pain finally seemed to have completely subsided. He was still not a big fan of being moved much and still didn't seem to be hungry at all, but at least he was quiet. He even consented to reaching for a toy or two.
A few of our old NICU friends visited which was nice.
And we waited.
Finally this evening, Dr. Coln came to check on Robbie and said we'd try feeding him a bit.
He took about an ounce of food about 6:45. At around 10, we checked- barely a cc was left. DIGESTION!
He also was STARVING. We couldn't warm a bottle quick enough for him. He ate about 2 oz.
Right now the plan is to feed him what he wants as he wants it through the night. Tomorrow we'll start giving him full feeds through the tube and see how it goes. If it goes well, we might get to go home.
Keep your fingers crossed.
Wednesday, March 4, 2009
It's been a very hectic few days.
Posted by David, Trish and Robbie Cox at 11:23 PM