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Post by CC on Jan 9, 2009 23:15:52 GMT -5
I am having a bad bad day all around  Sorry if I am just whining but I need to vent. Chris you all know needs to get a pace maker K, no biggy lots say and as far as Colin and I knew it was something they implant and then that is that. K, you have to know my boy to know why I am even going on here. BUT OMG do any of you know anyone that has one or seen a person after they get it? CHECK this out www.healthnode.org/wp-content/uploads/2008/05/pacemaker2.jpgK, to you and me no problem I mean we would get we need it and deal right BUT Chris OMG you have to know him and know how his OCB works and I am telling you all that him having anything that bulges (sp?) out of his body is going to be a REAL ISSUE This kid will beg for it to be taken out daily and will say he is sick and not do any of his regular stuff till it is removed or till he cannot see it do you even KWIM? I am sure most of you will think WTF you are just over reacting but I am telling you guys take Chris for a week better yet a day and you will get what I mean. He will try and pull it out or sit and do nothing till we get it out. If he can see anything at all Seeing a bulge of any kind in his chest will take over all his thinking over everything else This just plain SUCKS I tell you and we will meet up with the surgeon on Tuesday and I am going to try and get him to implant it any where that Chris cannot see it daily if possible  K, someone please tell me I am over reacting so I can clam down but I tell you I know my boy and if can see anything sticking out of him we are s c r e w e d CC ~ |
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Post by steffipoo on Jan 10, 2009 0:32:27 GMT -5
CC HI!!!!! I know many ppl who have pacemakers and lemme tell ya not one of theirs stick out like that one there. Perhaps you can have the dr.'s cover it for a few weeks while he adjusts to havinf it in his body. I am thinking here it may stick out more at the very beginning but anyone I know who have one, they don't stick out like that at all. Now I can feel it if they put my hand over it. One lady I know who is super skinny hers I can see slightly, but she is practically anorexic. Sorry he's gotta go thru it again. More stuff for the poor kid but betcha since he is not super skinny his won't bulge out. I swear I have never seen one like that guys.  HUGS Steff |
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Post by Ericsmomma on Jan 10, 2009 6:11:56 GMT -5
CC,
My brother had one too, and it never stuck out like that. I'd ask the doc about it and see what he says.
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Post by Emilysmom on Jan 10, 2009 8:46:50 GMT -5
CC,
No, you are not over-reacting. I know this is a huge concern for you!! I've seen many patients with pacemakers shortly after they've been inserted, and you do see/feel the bulge. BUT, I don't know if it's different for elderly people vs children (because of the difference in their skin elasticity and muscle underneath the skin)....you know? It really could be MUCH LESS apparent in a young person. It is a very good thing to discuss with his cardiac doc though!!!
You can also see in this picture......the guy is sort of pulling against both sides of where the pacemaker was inserted and that makes it stick out even more. He's trying to show the pacemaker, so he's pulling around it to make it stick up toward the skin. Not to mention that older folks (this guy included) have very thin skin and lots less muscle tissue, so it makes sense that it's much more apparent. And.....I do think it is more apparent in the very beginning than it is later on.
When I go back to work on Monday, I'll make a point of looking at several of the patients who have pacemakers. But I really don't remember seeing pacers stick out as much as the one in this pic.
Susan
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Post by damarasmom on Jan 10, 2009 8:59:56 GMT -5
Oh CC...I can understand your worry and concern. I would be having the same issues if it were me. I would have a very long discussion with the surgeon and let them know the huge concern and see what they say. Have them show photos to Chris and you on how it is actually going to look, let Chris try and get comfortable with it all...I don't know, just thoughts, sure hope the visit to the Dr. goes really well and helps with any anxiety for you all!
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Post by Googsmom aka Jennifer on Jan 10, 2009 9:46:31 GMT -5
I too have never seen a pace maker stick out like that. There is a slight bump but not like that. I understand your concern too CC. You know Chris better than anyone. I believe the difference btwn a pace maker and a difibulator is positioning. The pace maker sits under the skin and a defib sits inside a muscle. I think. I'm sure the docs can figure something out to ease the fears you have. {{{{{{HUGS CC}}}}}}}
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Post by laurasnowbird on Jan 11, 2009 10:44:56 GMT -5
No, you are so NOT overreacting.
I'm sorry, I know how hard it is to anticipate something that you know is going to be a nightmare. You know Chris' reactions to things, and I'm sure you're right that if it looks like that, he's going to want it out. Honestly, SO WOULD I!! That's a little freaky, and I wouldn't like it either. Add the OCD to it and you have the perfect storm.
Perhaps you could play up the positives, because I'm sure he's actually going to be feeling better almost immediately. I know it's hard for our kids to express how they are feeling, but the next time you see him acting a little peaked, perhaps you could point out that you're going to have it fixed, and that he's going to be feeling better soon.
I wouldn't hesitate to share your concerns with the doctor, and I know you're a great advocate for Chris, so I'm sure he'll truly hear your concerns. I can't recall what Chris' status is as it relates to OCD meds, but it seems that I recall he's taking a break from them. Perhaps it would be helpful to him to have them for a short period to help relieve his anxiety as it relates to the device if it is visible to him.
Good luck. I know this is hard, and it would be hard to make Chris understand he simply HAS to have it. Maybe promise trip to Disney if he leaves it alone? Make that darn Mouse work for you.
Hugs, Laura
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Post by char on Jan 11, 2009 18:43:03 GMT -5
CC, I don't think you are overreacting. I was in panic mode when Abby had her tonsils and adnoids out. These are our children and grandchildren, and we love them so very much. Many of them have already had to battle a lot of things, and one more thing just seems to be too much! I'll keep you and Chris in my prayers.
Char
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Post by CC on Jan 11, 2009 23:10:35 GMT -5
THANKS Ladies you are the BEST of the BESTEST  Honestly Colin and I are considering not doing this  BUT we will meet up with the surgeon on Tuesday as planned and I have my list of ?'s all printed out. Maybe a second opinion is in order but by whom and where  Colin and I at the moment feel we are between a rock and a hard place, KWIM? He needs it they tell me but what will his quality of life be? Chris is a very active kid, loves to swim, ski, bowl, ice skate, ride his bike and so on.... BUT if this keeps him from doing his fun things, even if only in his mind... WHAT good is it? I know to some of you this may sound just terrible that we would even consider NOT doing it BUT Man oh Man when is it enough? I know Chris like a book and this could be a true nightmare for him  I think they need to look at the whole person KWIM Honestly I am literally sick over this decision we have to make for our boy that we just LOVE with ALL our hearts. I am hoping I feel tons better after we meet up with the surgeon on Tuesday BUT I am telling you he better have all the answers we want to hear. Laura OMG LOL yes we too have thought tat beloved Mouse to Chris just might come in real handy  THANKS for listening to me ramble, I am just a wreck over what the right thing for him to due is CC ~ |
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Post by Googsmom aka Jennifer on Jan 12, 2009 9:55:41 GMT -5
{{{{{{HUGS}}}}}}
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Post by jelanismom on Jan 13, 2009 2:04:16 GMT -5
Hoping and praying for an easy time for you and Christopher. It's hard to read how you need comfort in this difficult time, just glad you share your concerns, just wish I had answers...but I'm certain all will go well. |
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Post by Claire on Jan 13, 2009 18:04:49 GMT -5
Hugs going your way
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Post by Ericsmomma on Jan 13, 2009 19:10:00 GMT -5
Prayers coming your way for the wisdom you will need to make your decisions, and prayers for the doctors who will guide you and yours through all this. I hope you get all the answers you need to make your choices "clear" and the best possible for Christopher. Hugs to you!
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Post by Valerie on Jan 13, 2009 23:05:10 GMT -5
CC, very sorry that Chris has to go through any of this at all!  I'm not trying to placate you, cause you know your boy better than any of us, but just maybe it won't be as bad as you think. I've seen plenty of pacemakers, and have to do pacemaker checks over the phone, and most of them are really not that visible. You can feel it with your fingers, it's just a little harder than the surrounding skin. Again, you know him better than the rest of us. Nicholas has a bit of obsessive/compulsive behavior himself, I'm sure nothing like you're dealing with, but I do know that when he gets something in his head that should be a certain way, there is just no convincing him otherwise. I feel for ya! Wishing you all the best!!! |
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Post by CC on Jan 14, 2009 0:48:54 GMT -5
THANKS so much again you ladies truly are the BEST Just got home from one very long day in the city and YES we are going through with Chris getting the Pacemaker. Had all the pre-op tests at Babies Hospital in NY City and met with the surgeon. I was a bit frazzled with the pre op tests not due to Chris he was a CHAMP with it all BUT my lord the wait for each and every test. Goodness took so much longer then I thought it would but there done now so that is good. The Surgeon had all the right answers for Colin and I that was a good thing He assured me Chris would not see it and it would not bulge out like the photo I saw on line YES to that ;D He met Chris and was GREAT with Chris which was a plus and we talked lots bout his OCD and how he is. LOL he got to see just a little of it himself Man oh Man the hospital put a name bracelet on him for all the tests and Chris OMG was begging and I mean continuously for that to be taken off. Chris was so sad with the little name thing on him would not smile walked like an old man, and kept saying sick and asking for it to come off... I kid you not the moment we finally could take it off he was back to smiling saying lets get pizza and go home LOLOL Anywho the guy told us Yes Chris must have this as his heart beats just find and then bam out of no where it will pause, most times the pauses are 3 seconds but the last test showed 5 second pauses and he explained this was way to long for a heart to pause and they are concerned that Chris could just pass out and maybe crack his head or worse yet the heart would just not start again They have no idea why his heart is doing this but he said it doesn't matter why it matters that we fix it. K, I get it he needs it but we did go over that say my worse nightmare comes true and this boy will just think he is sick and never do anything. I am sure you guys think Yea right that would not happen and I hope it won't but I am telling you there is such a strong chance of that... hence all my fears and ramblings. Any who he promised us that if my fears came true they would not be happy and probably try to convince us to keep it in BUT that yes it could and they would take it out. So Chris goes back to Babies Hospital this Thursday we have to be there 7 AM and the procedure will be done at 9 AM and if all goes well we will be able to all go home my early to mid afternoon. He said this was not considered a major procedure at all and the only reason they will put Chris fully out is because there is no way he would stay still on the table for this. He told me that adults are not put out for the procedure, just numbed up like going to the dentist Chris will be good to go back to school on Monday and just can't bowl, play golf or things where you move your arms like that or lift anything heavy for the next 6 weeks. He did say if you touch the area yes you would feel it and it will actually move around some. It has to have a bandage over it for about 7 or so days till we go back. So thats all the facts LOL probably lots more then you wanted to hear BUT it helps me to get it out. I am going to trust this guy and believe Chris will eventually forget it is there and not see it ;D If you think of it PLEASE think positive thoughts that the Anastasia (sp?) is not a problem that is one thing Chris really never does well with After all this was done the boys headed home and Kodi and I headed to see the Broadway play Billy Elliot and all I can say is it was just WONDERFUL I highly recommend it to anyone that loves musicals. HUGS to you all. CC ~ |
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HUGS Steff
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
I'm not trying to placate you, cause you know your boy better than any of us, but just maybe it won't be as bad as you think. I've seen plenty of pacemakers, and have to do pacemaker checks over the phone, and most of them are really not that visible. You can feel it with your fingers, it's just a little harder than the surrounding skin. 