Updates on Nolan

Yeah, so there is a hole left once the mic-key button is gone. These close up pretty quickly when the button has been in for less than six months… Nolan had his in for two years so things aren’t closing up quite so quickly, though it is “closed” enough to make it impossible to replace the button without surgical intervention. We have had some leakage issues, the fluid coming out bothers his skin around the ostomy and seems to make the ostomy itself somewhat raw. (sorry if you were eating while reading this…). So we put bandages over the site and put various ointments on his skin to both protect it and to help it heal. He has had a cough for the past week which seems to have made the leaking worse as he bears down to cough but the site is looking better now as we have been more on top of taking care of it. Apparently the doctors give such a long term hole about 4 to 6 weeks to heal before they begin talking about intervention.

After doing some research and talking to my handy Dr. neighbor it seems there is a chance (say around 40%) that he will have to have surgery to get the hole to close. I have heard everything from simply stitching it closed to the doctors needing to scrape down to the next epithelial layer so the skin will connect. I haven’t asked what the surgeries would entail in terms of anesthesia because I am not ready to know. Meanwhile we will just assume his body will do its work in Nolan time and I am going to put my new found knowledge of Qigong to use to help things along. Remember, closure is a good thing.

Yesterday Nolan was playing with some children who live in Mimi and Dindin’s neighborhood. At one point one of the girls, Emily, picked something off the floor and asked me “what’s this?”. I about dropped the computer when I realized it was his mic-e button, the balloon had burst and it had simply fallen out. The openings can close quite quickly, sometimes as fast as 30 minutes so I attempted to get that button in just to keep the hole open enough to put a replacement button in but I couldn’t get it to go. After some calls to his Pediatrician we decided to drive home and try to get a new button in there (if we had one, we weren’t sure). At home we did find a new one as well as some lidocane and lubricant to make it easier for everyone but we still weren’t able to get it to go in.

The next step would be either to go to the hospital ER and have them attempt to stretch the hole little by little until the button went in OR take the hint and just leave it out. Since we hadn’t used it for feeding since Nov. 2007 and we really didn’t want to spend the evening in the ER (for all our sakes) we decided to leave it out. This is something we had been wanting for a long time but we still felt (feel) a but panicky about that safety valve being gone, there is a long list of “what if’s” one can get trapped by. But it is also exciting, we have never known Nolan with a object free belly and now it is clear for full on zerberts and rubbing. It is bizarre to have nothing sticking out of his belly, kind of like the first time he was tube free in the hospital, it was strange to be able to just pick him up without having to rearrange and be careful.

And so the next adventure begins!

Nolan has started going to preschool two days a week. It is a great school with mixed population of average kids, physically challenged and developmentally delayed kids; all the kids play and learn together without any separating or lowered expectations for any of the children. There are at least three teachers in the class with 12 kids. He has been twice and seems to have just fit right in like he has been patiently waiting for Mom and Dad to become ready to send him. There are some pictures from his first day in the photo gallery (hopefully I will be able to post them). I am sure there will be stories to tell as he spends more time there…