On Friday night, Ammon had a frosty (homemade one) for dinner. He loved it. About 15 minutes after he ate, I checked in on him to see what he was doing. I noticed that the front of his shirt was wet and thought maybe he had spilled his shake but he said he didn't. So I took him out of his wheelchair and saw that the dressing around the repaired hole where his g-tube had been was leaking. There was no way it should have been leaking at all. The doctors had separated the stomach from the wall of the belly and had stitched both the stomach and the belly separately. But there was the shake leaking out. Jim immediately called the hospital because we were afraid it might be leaking into his peritoneum which could require immediate surgery and would be a hard one to fight. They told us to take him to the ER (yeah, our favorite place) so we left about 8:15 p.m. Once we got there, they examined him, called in our surgeon's partner and made some decisions. He called Dr. Scaife (our original surgeon) and they discussed the matter at length. They had me feed Ammon some flavored dye through a large syringe so they could watch the track of the liquid via ultrasound. It was determined that there was no leakage into the peritoneum so surgery was ruled out. We initially wanted them to do surgery immediately and repair the hole. Apparently the stomach adhered back to the belly wall due to scar tissue and then the stitches ruptured open. It was just like we hadn't done the surgery the Monday before.
The options were not good ones. They felt that the tissue surrounding the area was too inflamed and fragile to hold up for another larger, more difficult surgery so they said they needed to pump his stomach via an NG tube which we had promised Ammon would not happen as long as he ate enough to satisfy us. Well, he had done that and here we were, facing the one thing none of us wanted.
It devastated Ammon to have the tube threaded through his nose and down his throat. He cried for hours and hours. He was angry and he was defeated. He said, "Didn't I eat enough, Mom? I tried! Why do I have to do this? I'm tired. My body is tired. Thirty seven surgeries are enough. I'm done. I don't want to do it any more." I couldn't blame him. I cried with him, filled with regret that the NG tube had to be placed. Filled with sorrow that there weren't many good options and filled with an emotional pain that is hard to describe as you watch your own child suffer and you can only hold him and reassure him that he really doesn't want to die. I'm sure he did at that point. We finally got him admitted at 3:00 a.m. and turned off the lights to the room at 3:30 a.m. It was a rough night for all of us, but especially Ammon.
They began immediately the pump to get liquid out of Ammon's stomach. The goal is to have the stomach stop producing juices so it can be quiet and allow the flow of the acidic material to stop. That will help the inflammation decrease and hopefully will allow the skin to close in itself and heal. There are two more possibilities that we are facing. It may be possible to insert a new G-tube if it looks like the skin won't close but again we may be buying more, new issues like we are trying to fix. If they can't do that or we decide not to go that route, then surgery will have to happen to get that hole closed.
So they need to feed Ammon some nutrition so bulk up his system and get more protein inside him which helps with the healing process. They are doing that with a pic-line. That's like an IV only it goes deep into an artery and they stitch it in place because it will be used long-term. In order to insert a pic-line, Ammon can't move a muscle. (This happened the following afternoon.)
The people doing the procedure came in and asked if he wanted to be sedated or just hold still. I suggested they see if the music therapy people were in the hospital because they were such a good distraction 4 years ago that Ammon didn't need to be sedated. Ammon was all for that idea. The group wasn't in the hospital so we called child life and the woman below is holding an Ipod finding Ammon's favorite music which she let him listen to while they inserted the pic-line.
This is the woman that put in the pic-line. We had an interesting conversation with her. When I asked Ammon how he wanted to do this, she piped up and said, "Well, Ammon, you are only 17 and you can't make the decision. Your mother will do that." I glared at her and said, "This is Ammon's body. He has a mind of his own and he chooses for the most part (all except the NG tube) what should or should not be done. I just support his choices so it's up to him and we will respect what he wants to do." She looked pretty shocked but she was very respectful after that towards Ammon. In fact, while working, she asked a lot of questions about Ammon. She was very touched to hear how active he has been in school, i.e., dates, Manhawk dance competition, etc. She saw him, finally, as a real young man who is special - and he's a person, not a dummy she has practiced on. It turned out to be a great experience even though it started out a little rocky.
Ammon did not move a muscle or cry one little bit. He was incredible. She said, "I wish every one of my patients were like he was." (Well, hopefully she will care a little more about them as individuals in the future.)
So I went on my mandatory walk to clear my head and to see all the new things happening at PCMC. They are tearing up the front of the building but I don't know what they are going to do with the space. The ER wing is now complete and a complete maze - you can definitely get lost in there and get locked out as well.
There are now several children's statues along the front wall of the hospital just in front of the ER wing. It is very nice.
While this issue with Ammon isn't the most daunting one he has ever faced (by a long way), emotionally it has been the worst one. He is now old enough to speak up and understand more about what they are doing. They asked him (after the NG tube had been inserted) on a scale of 1-10 what his pain was with 10 being the most severe. He held up 10 fingers and said, "Ten - my emotional pain is 10." For the following two and a half days, he has barely spoken to anyone. He is miserable and sad and depressed as he told me he was. He gave up the fight. It scared me because he's always been such a fighter. Tonight I talked to him and he told him his spirits were lifting just a little. He sounded much better. Now if that darn stomach would just stop producing and clear up, they could pull that tube out and Ammon's spirits would brighten immensely.
A reflection of the huge new building being built across from PCMC.
We are looking for any little ray of sunshine we can find right now. I found one.
