Our Very Unique and Quirky Simon

I kept trying to start this post several times over the week so I think I'm just going to wrap it up and add it.

Well, we've known pretty much since birth that life with Simon was not going to be ordinary. Sometimes we start living our normal lives and just kind of start getting kind of comfortable with ordinary; but like the saying goes "if you want a good laugh, tell God what your plans are." The fact is even though Simon took an expected detour from ordinary its been quite a while since he has. I still consider us very blessed, we have a lot of friends battling very hard every single day and extraordinary parents taking great care of them.


So this is what happened: Simon went in for 3 separate types of scopes to check his airways and esophagus to look for obstructions contributing to his sleep apnea; we knew the tonsils and adenoids would be coming out as well; pretty routine right? After about 45 min his Dr. came out and said he had GI bleeding that looked like old blood and he had aspirated some in his lungs so they "cleaned" and suctioned those, there was also signs of prolonged reflux and aspiration, and he asked me who his GI doc was. I told him and instantly my anxiety level went up about 100 notches. They called me to recovery almost instantly which I didn't expect but was thankful for the gift. Simon was so agitated I was so saddened to see him like that; but I knew we were staying so he would be alright and GI would tell us what to do. As many of you know time in a hospital is so surreal and it always feels like you're waiting for ever and I'm pretty sure we did. In the meantime Simon was vomiting blood and could not get his O2 saturations up. No one dared feed him until we heard back from GI, he was on IV's so it wasn't dire, but when its your kid everything feels dire. Finally the nurse came in and told us GI ordered prevacid; what? His anethesiologist (who I loved) stopped by and asked how he was doing, when I told him the treatment plan he just got a look and said "that was a lot of blood in his stomach." So I pursued that further and did finally feel good that prevacid is the best treatment at this time. He is no longer vomiting blood and additional acid can cause ulcers and irritation that can cause that type of bleeding. I knew his GI was smart but its irresponsible to not make sure you also feel right about whats happening. I'm still admitadly nervous about it all and am looking forward to his appt with his GI on Wednesday.


Simon could not keep any fluids down at all. He had an extremely rough night and never settled. He could not keep his oxygen saturations up even on 2 liters of O2 and we had to add a blow by as well. Simon vomited most of the night. I'm not going to go into how we were sent home but I will say Simon vomited while getting him in his chair and the mentality still seemed to be rushing us out. I'm very disappointed with the experience. We knew he shouldn't be leaving but I was hopeful that maybe being home would be the best thing for him to heal. Within minutes of getting him home I knew that we wouldn't be able to sustain him there and called his pediatrician. I figured if he felt we could care for him safely then I would feel better about it. He decided to send us up to our local hospital and get him on IV's as his stomach was not moving at all. Eventually it was determined that the lortab stopped his bowel system. We did come home on oxygen so we just continued on the 2 liters. After a day or two here we decided to try to wean him to 1.5 liters and he immediately plummetted to 84 so we decided it wasn't time to make that move after all.


On Friday we started him on 1/4 diluted food on a slow pump and except for some gagging initially he's done well and seems to be becoming less restless all around. We've had some diarrhea and his stomach is starting to turn on again. We turned down his oxygen again and had much better results. We started a slow pump of 1/2 diluted food and he did well. Turned down his oxygen more and he did well on that as well.


We finally started seeing some sparks in him and personality. There was nothing more heartbreaking than seeing him getting poked and IV's and not reacting at all. When this all first happened he wouldn't even move out of the position he was put in; by Friday he was trying to roll and forget everything else; that is what made my breathe my sigh of relief.



We are home now; all of us exhausted. Simon's lungs are still gunky but he's just barely dipping below 90 occasionally and all without oxygen; he is still on his night time oxygen and still in pain. He can't take lortab so we're giving him tylenol every four hours to make sure he doesn't hurt too much. We are so happy to be home though and glad he's improving. Simon's body has difficulty sometimes and I think this was just too much for it to take on its own.