Simon is progressing. He was having trouble laying his head down and it was heartbreaking to watch. I finally called his Dr to see if this was normal and apparently the neck muscles can get hyper-extended from all the scopes and T&A. So he sat in his special tomato with a heating pad. Tylenol is taking the edge off his pain. The poor kid seems to almost have separation anxiety and just does not want to let us out of his sight. He has lost 2lbs during this whole ordeal and we need to increase his food, but right now its hard for him to handle what he's taking in......We'll get there. I'm not a patient person but I'm becoming so thanks to my great guru Simon.
I went back to work Friday and now I understand how people can become reclusive. After being cooped up in the hospital and then home for so long interaction with others filled me with anxiety; or being away from home and my control of making sure Simon was safe filled me with anxiety, but I was filled with anxiety regardless. Work is a definitely love hate relationship. But you do what you gotta do.......
All the kids are back to school now. Routine is good. I'm having trouble motivating Hayden to concentrate on his school better. I'm open to any suggestions for a strong-willed, stubborn almost 16 year old. Who by 16 year old definition already knows everything and school is teaching him absolutely nothing. I figured then he should go work for NASA and make himself useful with all his knowledge but ironically NASA really prefers you at least have a high school degree so we're stuck.
So through all of this I was driving to work to make sure I could get home in a hurry if needed. Now I'm back on the train with all the "characters". There are some very interesting people/situations on the train, including my own so after much pushing and deliberation I will be starting a train stories blog for some comedy relief.
Wednesday, January 19, 2011
Sunday, January 9, 2011
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.
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.
Sunday, January 2, 2011
Merry Christmas, Happy New Year and Just Living Life
I haven't been great at keeping this up well at all.
We had a good Christmas. Quiet and together. I think we managed to surprise the boys which is what I really like to do. Just to keep that magic alive. Simon's switch didn't quite work out with the toy we planned so we're searching for a good toy to use with it. I'm still glad he has his own switch though. I found him a great musical bath toy that he can bat at and activate; PERFECT and he loves it too.
The New Year for us was quiet; except for the teenagers we were asleep by about 11:30PM, that is just how we roll. Sleepy. LOL The next morning it hit me we're only a couple of days from surgery and I just held Simon and cried. Even these minor surgeries get me until they are behind us. I can't stop kissing his cheeks and hugging on him. He started pushing my face away tonight so I guess I've reached my quota for the weekend.
I will leave you with my New Year's wish for my fellow chromosome moms, but I think its fitting for all parents really:
May the new year bring you happiness and especially good health. Smart doctors and caring nurses. Therapists who help your LO strive to their fullest potential. A smile that melts your heart or even just a blink; and a spirit that seems to speak to yours. Just remember to look back and pat yourself on the back! You made it through challenges and surprises that on days you didn't think you had the strength too. All the worries and sometimes heartache for your LO, they are behind. You can take those baby steps forward knowing that your LO is in your wonderful, able hands to guide them to be the best they can be, already in 2010, now in 2011 and continuously.I think you are all amazing people, raising other amazing people! I wish you a very happy new year.
We had a good Christmas. Quiet and together. I think we managed to surprise the boys which is what I really like to do. Just to keep that magic alive. Simon's switch didn't quite work out with the toy we planned so we're searching for a good toy to use with it. I'm still glad he has his own switch though. I found him a great musical bath toy that he can bat at and activate; PERFECT and he loves it too.
The New Year for us was quiet; except for the teenagers we were asleep by about 11:30PM, that is just how we roll. Sleepy. LOL The next morning it hit me we're only a couple of days from surgery and I just held Simon and cried. Even these minor surgeries get me until they are behind us. I can't stop kissing his cheeks and hugging on him. He started pushing my face away tonight so I guess I've reached my quota for the weekend.
I will leave you with my New Year's wish for my fellow chromosome moms, but I think its fitting for all parents really:
May the new year bring you happiness and especially good health. Smart doctors and caring nurses. Therapists who help your LO strive to their fullest potential. A smile that melts your heart or even just a blink; and a spirit that seems to speak to yours. Just remember to look back and pat yourself on the back! You made it through challenges and surprises that on days you didn't think you had the strength too. All the worries and sometimes heartache for your LO, they are behind. You can take those baby steps forward knowing that your LO is in your wonderful, able hands to guide them to be the best they can be, already in 2010, now in 2011 and continuously.I think you are all amazing people, raising other amazing people! I wish you a very happy new year.
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