Kiddo Update, with pics and video

Thank you to everyone who has been asking about Kiddo, praying for him, or sending good thoughts his way. You have no idea how much I appreciate your concern. I've been wanting to update you on the whole surgery/recovery process but have been unable to until now. Fair warning: this is going to be a LONG post.

After a fabulously relaxing family weekend at the beach (which we all needed), Kiddo had surgery to put in a feeding tube on Tuesday, 9/29. The prep for the surgery was identical to the prep we do every six weeks when Kiddo has his regular endoscopy appointments: same part of the hospital, same staff, same routine. Everything was fine until about 10 minutes before the surgery ... that's when Kiddo got nervous. He has no problem going under anesthesia (in fact he likes it!) but at the last minute he got very afraid of getting the tube and how it might feel afterward. It took lots of hugs from me and lots of tears on his part before he calmed down, and he was still nervous when they wheeled him down the hall into the operating room on his hospital bed.

The surgery was supposed to take 45-60 minutes so the doctors intubated him, just to be on the safe side. He's never had that done before but Hubby and I knew it would mean a very sore throat when he woke up.

After the surgery was completed the nurses called us back into the recovery room to wait for him to wake up. Normally he take about an hour to wake up after anesthesia but this time it took only 10 minutes because he was in such horrible pain. He started crying as soon as he woke up because both his stomach and his throat were burning. It hurt so bad that he couldn't catch his breath; he thought he couldn't breathe so he sat up and started freaking out a bit, which of course made things hurt more. The nurse was right there with a shot of morphine though, and he calmed down pretty quickly. I had to make Hubby leave the room though because he was getting too upset himself.

After the morphine helped him relax, Kiddo clung to my arm and dozed a bit. He wouldn't let me go at all. Based on his pain level the nurse gave him another shot of morphine shortly after the first one. He was definitely relaxed after that, but still in lots of pain.

Eventually we were moved into the private room where we'd be spending the night. Let me just say right here that the staff at University of Maryland Children's Hospital (with the exception of one nurse) were fantastic - they couldn't have done a better job. It is a teaching hospital so there were lots of people in and out while we were there, but they were all wonderful even when they were rather repetitive.

Just before we'd left the recovery room Hubby's parents arrived. That was great because Hubby really needed some support right then. They stayed for a while but then my parents arrived and my in-laws headed out. Then my sister, her husband, and her two boys got there. Needless to say, our little room got crowded really quickly.

my side of the family with Kiddo

You might think from those pictures that Kiddo was feeling pretty good ... alas, no. In point of fact, he had four shots of morphine by that point and was floating in la-la land. He still couldn't talk (his throat was very sore and he wasn't allowed to drink anything yet) but he definitely let us know if we were talking too loud and bothering him. :) However, as soon as I took out the camera he plastered a smile on his face for the pictures. Man, have I brainwashed the kid or what?!

Lots of family and friends sent Kiddo gifts, some of which we brought to the hospital to keep him entertained. If you look at his face in the next few pictures you'll get a better idea of what he looked like most of that first day in the hospital.

that's me in the blue sweater aboveMe, Hubby, and a drugged out Kiddo (above)

Later that night after everyone else left, my in-laws came back to visit. Kiddo was getting Tylenol every two hours by then (rather than more morphine) so he was a bit more alert. Enough to play with toys, as you can see.

Grammy and Kiddo

Sometime that evening Kiddo started getting flushed in the face, warm to the touch, and he started shivering. We were concerned that he had a fever - a common but still not good side effect of the surgery they'd warned us about - and that would mean another night in the hospital. However it seemed to be merely a side effect of the anesthesia or the morphine and it went away about 30 minutes later.

Around 1:30am Kiddo and I went for a walk down the hall. In the hub between the various hallways on this floor there is a "forest" with seats and a small slide for the kids to play on. Kiddo had just enough energy to make it to the seat (below) ... and then he didn't want to move. It took quite a while to get him back to his room, and he was in a lot of pain by that point.

At this point we tried to get some sleep and it worked ... for a little while. Remember Kiddo's evil plan? This video shows what actually happened, but the volume is really low so you have to listen hard. Also, the video shows the tube itself (just so you know).



After we made that video I went back to sleep in my chair and Kiddo watched tv until 6am. I finally made him turn it off and get some rest. As you can imagine, I was pretty tired the next day.

Through a series of delays on the part of the home medical supply company, we thought we'd have to stay at the hospital that night (9/30) as well. Kiddo was NOT happy about that (neither was I) so I tried to lift his spirits throughout the day. In the early afternoon the Child Life gal came in to see if we needed any toys or activities - YES! She came back with a few action figures that kept Kiddo busy for quite a while. Later that evening it was scrapbook night on the children's floor; Kiddo wasn't up to walking again so I headed down to the tree room and picked up some activities and brought them back to the room. They definitely did the trick.

Hubby sent his dad up with some gifts that were waiting at our house. Kiddo opened them while talking to Daddy on the phone. Again, it was just enough to improve his mood and resign him to another night in the hospital.


My mom came up that evening with a friend to cheer us up a bit. At 10pm we got the news that we could finally go home. YEAH! So we loaded Kiddo up into the wagon (much better than a wheelchair, don't you think?) and my mom took us home.


We were exhausted but glad to be home (please excuse my messy house, but yes, that is my new bookshelf behind the couch!).

Kiddo with cards and gifts from school, friends, and family (below)

The first few days without food were REALLY hard for Kiddo. He is usually such an upbeat kid but he had one day where he was completely depressed and he moped around literally all day. We decided to schedule a few short visits with friends to help him get his mind of things, and that helped a great deal. These next pictures were taken on 10/3, just four days after the surgery.


In the two pictures above you can see the feeding tube attached to the pole. That is what we use at home. He needs to do one-hour feedings three time a day then an eight-hour session over night. When he's at school or out someplace else, he's got this great backpack he can wear that holds the bag of formula and the pump. You can see it in the picture below.


So ... that is the briefest summary I can manage of Kiddo's surgery. Everything is healing well and we go back to the doctor for a follow up on 10/8. If all is well, Kiddo will be allowed to eat a few things that afternoon. That would be wonderful.

Oh, and one more thing. Ted Leonsis, owner of the Washington Capitals Ice Hockey team (Kiddo's favorite sports team in the world) heard about Kiddo, and he even mentioned Kiddo on his blog - isn't that fantastic?! Kiddo was thrilled.

As always, if anyone has questions about Kiddo's surgery or anything else please let me know - I'm happy to answer anything that I can. And thank you all again for caring about my Kiddo.