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Post by CC on Jan 19, 2009 22:31:33 GMT -5
Christopher is not in school today as planned or told to us that he would be by the Docs. Looks to me that the earliest he might go back to school is next Monday and thats only if all goes well on Thursday. THANK God our company is slow this time of year and I have Colin here to help me. This morning Chris woke up was very sad, would not speak at all and actually his color was Grey for a bit. He was up about an hour then headed back to bed and went to sleep again Didn't seem normal or right to me so I called his Heart Doc who happen to be out of town till this Thursday so I spoke with his partner. She was not happy with what I told her and told me to call the surgeon. Turned out he is out of town also Christopher's heart Doc partner called me back and by then his color was better and he seem in pain so we gave him some Tylenol (sp?) She said to keep a close eye on him and that his pace maker may need some fine tunning and may not have kicked in when it was suppose to K, I have NO medical background but shouldn't they have made sure this thing was fine tunned before he left the hospital? She told me I could drive into the city to the ER which would probably take about 30 to 40 min with NO traffic on a good day or just keep an eye on him with close contact with her. I asked her if I could just take him to our local hospital and she said No he has to be seen in the City WTF is what I say to that. K, to try and keep this short which I tend NOT to do He perked up some and for now is still home and asleep at the moment. I know others have it lots worse but right this very moment I have to say this all SUCKS for my boy and its just not going as they said it would THANKS for letting me get it out, it helps me tons. CC ~ who wants Thursday to be here more the Chris I think
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Post by ALLISA on Jan 19, 2009 23:27:13 GMT -5
CC...I've been away from the board for a couple of days....so I didn't realize he already had the procedure ! I've got to go and see if you posted how that went ! I just wanted to say......that I hope he is back to your usual charactar ASAP !! Vent all you need....... We got your back !! ETA: Just found your post about the procedure.....I'm sorry that I missed out....but he's got all my thoughts now !
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Post by Ericsmomma on Jan 20, 2009 6:33:16 GMT -5
CC, that does stink! How's his pulse rate? Maybe he's still feeling the effects of the anesthesia. Why can't you take him to your local hospital if necessary? At least they could monitor him. And they could transfer him to the city hospital if needed. Hopefully, he'll be better this morning. I will keep him in my thoughts and prayers..Hugs to you all.
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Post by Pat on Jan 20, 2009 7:09:56 GMT -5
Is he feeling any better today? I hope so. ((to you & Chris)) Let us know. Pat
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Post by momofrussell on Jan 20, 2009 8:48:52 GMT -5
Yes, CC, how is Chris today??? I am sorry he isn't feeling well. I know nothing about pacemakers and their procedures. I would think they would try to fine tune while in the hospital but since everyone is different, it sounds like it may need more fine tuning??? I hope he feels better today! A.
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Post by sd112170 on Jan 20, 2009 8:57:02 GMT -5
I pray that all is well today. Maybe Chris will be back to his self. Prayers goin' for ya.
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Post by damarasmom on Jan 20, 2009 9:55:50 GMT -5
I sure hope he is better today! Feel free to vent to us anytime...we all need a place to let it go. Let us know how Chris is doing and I will keep him in my thoughts and prayers!
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Post by Googsmom aka Jennifer on Jan 20, 2009 10:04:16 GMT -5
Oh CC {{{{{HUGS}}}}}
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Post by laurasmom on Jan 20, 2009 20:28:04 GMT -5
CC
I hope Christopher is feeling much better.
As for the fine tuning, that is rather expected. I worked with cardiac patients in the cath lab and in CCu for 20 years, and in a vast majority of the times, the pm settings were adjusted after placement of the pacemaker, sometimes several days to a week or so after. It takes several days for the leads to fully "seat" in the heart muscle, and then they will adjust settings to fit Christopher's needs. I hope they get everything adjusted perfectly. We have a boy in our support group who has a pacemaker, and he does beautifully.
Keep us posted. Sharon
Keep us posted. Sharon
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Post by laurasnowbird on Jan 21, 2009 8:12:08 GMT -5
OK, CC, that would have scared me more than just a little bit. Reading your description of how he looked made my stomach sick. ((((HUGS))))) to you.
Sharon, thanks for sharing what you know. I wouldn't have thought that was part of the process, but it makes what CC saw with Chris sound more like a normal part of adjusting to the unit.
We'll be checking for updates, and our family will continue to pray for Chris.
Laura
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Post by momofrussell on Jan 21, 2009 9:26:23 GMT -5
CC... any new news?? How is Chris?? Please post up when you can!
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Post by lorraine on Jan 21, 2009 15:44:32 GMT -5
Sorry I missed this earlier, How's Chris today?
Hope he's feeling much better now.
Lorraine
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Post by sd112170 on Jan 21, 2009 16:16:44 GMT -5
Hugs Hugs Hugs!
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Post by CC on Jan 21, 2009 21:13:55 GMT -5
THANKS as always for letting me vent. Christopher is still not in school and no way will be going this week. He is better some I think but man oh man for some reason he still seems so very tired, out of sorts and in pain still. Certainly not how I was told how it would go. Dolly you asked "Why can't you take him to your local hospital if necessary?" Get this they tell me the pace maker if not working right he has to be seen by a Ped Electro Physiologist (sp?) and can you believe there is not one of them in New Jersey The EP guy is the one that tests the Pace maker and makes corrections to it so they tell me. Plus they told me my local hospital would have no idea of the settings and such... I was like have you people heard of phones, come on if there is a problem I will go to our local hospital, he can be seen by an adult EP guy and they can call into Columbia if necessary. Geeze they have to be kidding if they think I am going to drive Chris into New York City ER when there is an issue. Sharon ~ We go back to the surgeon tomorrow but the Electro Physiologist is the one to test and adjust the pace maker and as of the day of surgery he said come in 2 months from now for a check. Hmmm does that sound to long to you? I will find out more tomorrow as Colin Chris and I go back to Babies Hospital for Chris to have an x-ray of the area and then hopefully the removal of the bandage. PLEASE PLEASE keep your fingers crossed that Chris will be so happy the bandage is off that he won't even think about what is under his skin. The kid even though is still not feeling well OMG he cracks me up. He does well with visual so since the surgery last week he keeps pointing to the area and says OFF and I honestly am not making this up, HE says it over and over and over and over..... So I showed him a calendar and said see Chris Thursday you get it off. K, so then he points to the area and says "Off Thursday and then Disney" OMG LOL wishful thinking on his part about the Disney part, LOLOL The kid has earned it for sure but sadly he will not be going this Thursday, more like next Christmas. I pray that tomorrow after our visit to the Docs I can report that the bandage is off and this whole deal is over and Chris is just back to his old self. If not we may just have to get him back on his OCD meds and pray that works. What ever it takes to get my boy back CC ~
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Post by laurasmom on Jan 21, 2009 22:33:54 GMT -5
CC
Unfortunately, getting the pacemaker in can be painful. They have to create a pocket for the pacemaker assembly to fit in, and it can be more painful for a younger person, as their muscle structure and skin integrity is great. The pain gradually goes away. Remember there is also inflammation and some swelling, which accentuates the pain. Having said that, it will get better, and as Chris improves, and starts moving around more, the pain will decrease quicker. I don't know his complete medical history, but if there isn't any reason against giving him ibuprofen, (check with the surgeon first, you might have to wait a certain amount of time after surgery before using ibuprofen) you might want to try that, as it can help decrease inflammation somewhat better than Tylenol.
The pm comes with some preset settings, and when they inserted it, they did preliminary testing, and I am sure made a few adjustments. I think it is great that he will be seeing a pediatric EP doc, they are able to determine the pm settings needed down to the millisecond. Waiting the 2 months may give them a lot of needed information for any setting changes that are needed, and will also give time for healing.
As for taking him in if he gets into trouble, I would definitely take him to the nearest ER. Can't believe what they told you. The closest ER might not be able to make pm setting changes, but as you said, they can call, and they can take measures to keep Chris stable as needed, until he could be transferred to the other hospital.
I am so sorry Chris isn't feeling himself yet. I am truly hoping getting the dressing off will make a big difference. Also, when the incision is healed, start putting some Vit. E oil on it to help the scar diminish in appearance.
Still praying......... Sharon
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