I work full time and Simon had two doctor's appointments last week, and I helped lead a parent's hour at the hospital and Joseph has prom coming up so I had to go tux renting with him. Needless to say things have been busy.
So the new scoop on Simon, sort of. His upper GI showed a distended esophagus, hiatal hernia (that is new) and reflux. The evidence of the GI bleed during his surgery and the distention suggests that he has had long-term reflux, though 3 years ago it was minimal. He has a malrotated colon but the GI did not think it was showing signs of symptoms so we're not worrying about that unless the surgeon said something. The surgeon ended up not being in town so she couldn't have him pop in like she had hoped. So we were waiting for his input and then would schedule the scope and biopsy and do the PH probe.
So I get a message from the surgeon's nurse that said he did not need to see Simon YET. So, like the patient person I am, decided to wait to hear from Dr. O'Gorman to tell me what he said and when to schedule the other tests. No phone call. Not like her. So I called today and left a message. She is in clinic the last couple of days but I'm anxious to know whats going on.
Two things she mentioned was for children like Simon are usually considered with these symptoms; a nissen or a GJ tube. We didn't make a decision or discuss it more because until the other tests are done we don't know exactly what we're dealing with. But I did start my GJ research because I naturally thought no surgery, we'll just do a GJ, problem solved. Well, there are things that make me uneasy about the GJ and now I'm not sure. So I've decided to stand back, wait for the tests to tell us what they need to, what they plan to do or consider and then so some real praying and soul searching for the best solution. Quiet meditation is how Simon and I communicate best so I wait for him to send me the mommy this is best vibe and the Dave to give his opinion.
I have to honestly say, I wish Simon was done with "issues" it really seemed like a honeymoon period for awhile. But this proverbial slap in the face of reality has kind of ticked me off. Simon rarely shows strong evidence or symptoms of illness for some reason. His fevers don't get extremely high, even with RSV and pneumonia simultaneously. His reflux he seemed to have a handle on. I'd see him swallow hard sometimes and get tense but it wasn't constant vomiting like when he was younger or even spit up problems or the old aspiration type holding breath and panicked look he used to get. It was an innocent general question about adenoids that started all this and it feels like a return to when he was born; "we'll fix this and then you'll just go on like normal." It wasn't true then and isn't proving to be true now. Its exhausting not quite feeling like you know what's coming next.
If not for his smile, his giggles, his quiet moments of reassuring wisdom connecting with my spirit, I'd be a bumbling idiot by now. Shut up Dave! LOL If not for the support of my husband and partnership as a family with Joseph and Hayden, so helpful and such good big brothers who do nothing but treat Simon as a brother and with love, I would be lost. Without my shaky faith, but a Heavenly Father that in the midst of my fits lets me know I'm never alone, I would fall.
I love my family. I am thankful for them. But the worrier in me and the need to know what's coming so I can run through at least 50 scenarios to make a decision does not like these surprises they like to throw at me. I'm sure its a character builder, but I'm enough of a character!
Thursday, March 10, 2011
Wednesday, January 19, 2011
Slow but Sure and Back to Real Life
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.
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.
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.
Friday, November 26, 2010
Thanksgiving
We had a wonderful Thanksgiving. We are so thankful for good family.
Joseph brought his girlfriend Meagan. She is such a sweet girl and she was a nice addition. I appreciate how Penny (my mother-in-law) always makes everyone feel so welcome. Meagan was just like the part of the family; no beats were skipped......
Hayden is so darn skinny and you would never know it was possible for as much as that kid can put away. He enjoyed 2nd and 3rds and two slices of pie. There is something satisfying about seeing a good eater for some reason.
Simon licked some lemon cream cheese pie and some fruit salad off his lips. He even allowed me to put it all on his lips with a spoon. There was a time when this kid wouldn't even play with a spoon in therapy. He'd play with the knives, the forks; but never a spoon. It was great. He also had some cranberry juice mixed with 7-up in a dixie cup and let me help him drink from the cup. He didn't open up, but again allowed the cup and the liquid touch his lips. These are HUGE breakthroughs that only a tube mom can really appreciate I think; but we invite you to celebrate with us.
I am not a Black Friday shopper so I went to bed at a good time and slept for 8 whole hours in a row. It felt great. I am at work and its just a nice quiet day. I'm thankful for those days. Once you have a house full of boys I think a quiet place anywhere feels really nice. I did manage to get some Christmas shopping done. I considered for a split second to get Simon a motorized Jeep LOL He's sitting in chairs well now so I thought how much fun for him! Then I realized there were no side supports and that the fun to be had was probably mine, not his. So I think we are going to check out the Tonka Chuck. It looks like just the sort of thing Simon would enjoy. He can hit it and bang it and throw it and it will talk to him and vibrate. I can't imagine a better choice.
I know we don't need special days to remember to be thankful, but those days help us to remember. I am thankful for so much. I have great family and friends around me when I need those shoulders and to whom I can be a shoulder which is equally as rewarding. I think about how far Simon has come and all his struggles and it hit me: Sometimes those steps backward are just what is needed to prepare for the propel forward. I can not deny he is progressing all the time. Even with the set backs, getting some of those things treated correctly is just what he needs to take those next few steps forward. He'll get where he needs to be when he needs to get there; just like we all do.
Joseph brought his girlfriend Meagan. She is such a sweet girl and she was a nice addition. I appreciate how Penny (my mother-in-law) always makes everyone feel so welcome. Meagan was just like the part of the family; no beats were skipped......
Hayden is so darn skinny and you would never know it was possible for as much as that kid can put away. He enjoyed 2nd and 3rds and two slices of pie. There is something satisfying about seeing a good eater for some reason.
Simon licked some lemon cream cheese pie and some fruit salad off his lips. He even allowed me to put it all on his lips with a spoon. There was a time when this kid wouldn't even play with a spoon in therapy. He'd play with the knives, the forks; but never a spoon. It was great. He also had some cranberry juice mixed with 7-up in a dixie cup and let me help him drink from the cup. He didn't open up, but again allowed the cup and the liquid touch his lips. These are HUGE breakthroughs that only a tube mom can really appreciate I think; but we invite you to celebrate with us.
I am not a Black Friday shopper so I went to bed at a good time and slept for 8 whole hours in a row. It felt great. I am at work and its just a nice quiet day. I'm thankful for those days. Once you have a house full of boys I think a quiet place anywhere feels really nice. I did manage to get some Christmas shopping done. I considered for a split second to get Simon a motorized Jeep LOL He's sitting in chairs well now so I thought how much fun for him! Then I realized there were no side supports and that the fun to be had was probably mine, not his. So I think we are going to check out the Tonka Chuck. It looks like just the sort of thing Simon would enjoy. He can hit it and bang it and throw it and it will talk to him and vibrate. I can't imagine a better choice.
I know we don't need special days to remember to be thankful, but those days help us to remember. I am thankful for so much. I have great family and friends around me when I need those shoulders and to whom I can be a shoulder which is equally as rewarding. I think about how far Simon has come and all his struggles and it hit me: Sometimes those steps backward are just what is needed to prepare for the propel forward. I can not deny he is progressing all the time. Even with the set backs, getting some of those things treated correctly is just what he needs to take those next few steps forward. He'll get where he needs to be when he needs to get there; just like we all do.
Tuesday, November 16, 2010
Simon Updates
This is copied and pasted from Simon's carepages:
1st Simon’s sleep study came back with him in the severe sleep apnea category. Both Central and Obstructive. Primarily central but he does have a slight obstruction. The question is what. So, he will be going in Jan 4th for a scope of his tongue, skull, voicebox and just his whole airway; if they find something obstructing it will be removed (except for the skull and tongue) and if they DON’T find anything else obstructing then his tonsil’s and upper adenoids will be removed; though at this time they do not appear to be the problem. This will not cure the sleep apnea, it will hopefully just remove the obstructive variable; his brain is still not telling him to breath. But removing the obstruction may improve it enough that we will only have to watch the central issue; if it doesn’t improve then we will be looking at cpap or bipap. We’re really hoping for neither of those. He will be staying overnight.
2nd thing. We had a physiatrist appt this past week and Simon’s small feet were brought up by us as a possible deterrent to him walking in the future. His feel will not prevent him from walking. Right now it’s his strength and desire. There is a strong possibility that Simon won’t walk. The rule is sitting up unassisted by 2 means you'll walk assisted by 5; he's not quite sitting up on his own yet. We are not surprised nor devastated at this news so we are not in need of support over this issue, it just is what it is. We do have some tools we’ll be using to help strengthen his legs and trunk. Simon may walk, no one knows really, but he has absolutely no desire to try and a huge part of that may be security due to a lack of strength; then again he may like being carted around. So we are going to help him get stronger through additional use of his stander, and do what Simon wants on Simon’s timeline.
3rd and oldest thing. Simon was having a lot of trouble with increased seizures and starting to get into those scary ones. He has started lamictial and has been on it about a month. It seems to be doing the trick. Once we get his sleeping more productive I’m hoping that should make a big difference overall in health and development.
We are extremely blessed that he has been healthy in so many ways. All of these things are just a normal part of a child with challenges like Simon’s and we are very grateful to have him with us and healthy. I am knocking on wood right now…..
He is so much fun and such a joy, he’s worth every hiccup and worry we have to go through on these occasions. Though we have asked him to stop after these.... ; P
1st Simon’s sleep study came back with him in the severe sleep apnea category. Both Central and Obstructive. Primarily central but he does have a slight obstruction. The question is what. So, he will be going in Jan 4th for a scope of his tongue, skull, voicebox and just his whole airway; if they find something obstructing it will be removed (except for the skull and tongue) and if they DON’T find anything else obstructing then his tonsil’s and upper adenoids will be removed; though at this time they do not appear to be the problem. This will not cure the sleep apnea, it will hopefully just remove the obstructive variable; his brain is still not telling him to breath. But removing the obstruction may improve it enough that we will only have to watch the central issue; if it doesn’t improve then we will be looking at cpap or bipap. We’re really hoping for neither of those. He will be staying overnight.
2nd thing. We had a physiatrist appt this past week and Simon’s small feet were brought up by us as a possible deterrent to him walking in the future. His feel will not prevent him from walking. Right now it’s his strength and desire. There is a strong possibility that Simon won’t walk. The rule is sitting up unassisted by 2 means you'll walk assisted by 5; he's not quite sitting up on his own yet. We are not surprised nor devastated at this news so we are not in need of support over this issue, it just is what it is. We do have some tools we’ll be using to help strengthen his legs and trunk. Simon may walk, no one knows really, but he has absolutely no desire to try and a huge part of that may be security due to a lack of strength; then again he may like being carted around. So we are going to help him get stronger through additional use of his stander, and do what Simon wants on Simon’s timeline.
3rd and oldest thing. Simon was having a lot of trouble with increased seizures and starting to get into those scary ones. He has started lamictial and has been on it about a month. It seems to be doing the trick. Once we get his sleeping more productive I’m hoping that should make a big difference overall in health and development.
We are extremely blessed that he has been healthy in so many ways. All of these things are just a normal part of a child with challenges like Simon’s and we are very grateful to have him with us and healthy. I am knocking on wood right now…..
He is so much fun and such a joy, he’s worth every hiccup and worry we have to go through on these occasions. Though we have asked him to stop after these.... ; P
Monday, November 15, 2010
Our First Post
We are blessed with three boys. Joseph, Hayden and Simon. They all keep us on our toes in many different ways. Joseph is 17 and getting ready to start his adult life soon. Hayden is 15 and just started highschool and finding out who he wants to be. Simon is 5 and has Trisomy 11Q Monsomy 20P; he has been instrumental in the wonderful men our two oldest boys are becoming justfor being him and adding a wonderful component to our family of learning compassion and unconditional love. This blog will be about the journey of our boys. Probably mainly Simon as he leads the most exciting life of all of us.
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