Mike Jones Update 01/22/2021
Hey Everyone,
We just got a call from his Cardiologist and Kaleb's team of doctors all agreed to get Kaleb into the hospital this Sunday prior to his surgery for all testing and preparation for his surgery which should be scheduled for next Tuesday the 26th or Thursday the 28th. They are taking all precautions in preparation for his surgery.
They tried to get him scheduled and checked in with a bed prior to surgery but the hospital is so strained with COVID-19 patients that we will have to go Thru the ER on Sunday and the cardiologist team of doctors on call this weekend are aware of his condition and plan and guarantee that they will get him a bed ASAP when he gets in the hospital. Because the hospital here is so strained with COVID patients they will probably not allow me to go in the hospital with him but the staff has assured me that they will take care of him once I release him to the ER.
I have never not been with him for any of his procedures all his life because of his limited range of motion and limited mobility from the EDMD (Emery-Dreifuss Muscular Dystrophy) so I will be working with the hospital management and doctors to try and get approval to stay in his room with him until he can leave the hospital after his surgery. I have stated to them that I will not leave the room and stay with him in his room at all times if they will allow me to stay with him so we will see what happens with that.
The plan is to do the extraction of his ICD device and place a temporary one lead connection in his heart and be in ICU until the infection is all gone and then a new ICD and 3 leads will be re-implanted in his heart and the new ICD will be placed probably on the opposite side of his chest as to reduce the possibility of reinfection of the device. He will not have use of either arm for about 3 weeks to a month because they will be removing the device on his left side and installing a new device on his right side and can’t use either arm until the new leads have enough scar tissue around them to keep them from coming out of his heart. Any falls could be detrimental or even fatal if any one of those leads was to come loose.
His spirit remains high and he asked his (brother and sister) Kristopher, Gracie and I if we could fix up his room for him while he is the hospital. So we graciously and enthusiastically agreed to get this done for him. He only has a twin bed and asked if I could get him a Full, Gracie is going to paint his room for him and add the Georgia Bulldogs logo and team colors for him and Kris is going to remove the old carpet and install new hard wood flooring in his room for him.
I tried to get him a PS5 and monitor for Christmas but they were all sold out of them so I will try again to get him one while he is in the hospital. (if anyone has any connections I could use your help in getting him one) He loves to play the video games and he is really really good at them.
My plan is to completely redo the master bathroom ASAP and take out the tub and small stand up shower and replace it with a large walk-in shower with a bench seat for him to sit and enjoy a shower. This has been waaay overdue but this has become the motivation I need to get this done for him and Gracie because she has EDMD as well (just not as severe as his at this point).
The shower as it is now is to small for a chair so he has a difficult time taking a shower. A new walk in shower will be such a blessing to assist now and in the future for him and Gracie.
He is remaining encouraged and steadfast on getting this device replaced and back on his feet so we will be doing all that we can to assist him and encourage him for a full recovery. I will update you all as I know more.
I truly cant Thank You all enough (my ATT family) for your continued calls, thoughts, prayers and support.
P.S. Mike did not ask for this and in my humble opinion he should not have to ask.
Hey Everyone,
We just got a call from his Cardiologist and Kaleb's team of doctors all agreed to get Kaleb into the hospital this Sunday prior to his surgery for all testing and preparation for his surgery which should be scheduled for next Tuesday the 26th or Thursday the 28th. They are taking all precautions in preparation for his surgery.
They tried to get him scheduled and checked in with a bed prior to surgery but the hospital is so strained with COVID-19 patients that we will have to go Thru the ER on Sunday and the cardiologist team of doctors on call this weekend are aware of his condition and plan and guarantee that they will get him a bed ASAP when he gets in the hospital. Because the hospital here is so strained with COVID patients they will probably not allow me to go in the hospital with him but the staff has assured me that they will take care of him once I release him to the ER.
I have never not been with him for any of his procedures all his life because of his limited range of motion and limited mobility from the EDMD (Emery-Dreifuss Muscular Dystrophy) so I will be working with the hospital management and doctors to try and get approval to stay in his room with him until he can leave the hospital after his surgery. I have stated to them that I will not leave the room and stay with him in his room at all times if they will allow me to stay with him so we will see what happens with that.
The plan is to do the extraction of his ICD device and place a temporary one lead connection in his heart and be in ICU until the infection is all gone and then a new ICD and 3 leads will be re-implanted in his heart and the new ICD will be placed probably on the opposite side of his chest as to reduce the possibility of reinfection of the device. He will not have use of either arm for about 3 weeks to a month because they will be removing the device on his left side and installing a new device on his right side and can’t use either arm until the new leads have enough scar tissue around them to keep them from coming out of his heart. Any falls could be detrimental or even fatal if any one of those leads was to come loose.
His spirit remains high and he asked his (brother and sister) Kristopher, Gracie and I if we could fix up his room for him while he is the hospital. So we graciously and enthusiastically agreed to get this done for him. He only has a twin bed and asked if I could get him a Full, Gracie is going to paint his room for him and add the Georgia Bulldogs logo and team colors for him and Kris is going to remove the old carpet and install new hard wood flooring in his room for him.
I tried to get him a PS5 and monitor for Christmas but they were all sold out of them so I will try again to get him one while he is in the hospital. (if anyone has any connections I could use your help in getting him one) He loves to play the video games and he is really really good at them.
My plan is to completely redo the master bathroom ASAP and take out the tub and small stand up shower and replace it with a large walk-in shower with a bench seat for him to sit and enjoy a shower. This has been waaay overdue but this has become the motivation I need to get this done for him and Gracie because she has EDMD as well (just not as severe as his at this point).
The shower as it is now is to small for a chair so he has a difficult time taking a shower. A new walk in shower will be such a blessing to assist now and in the future for him and Gracie.
He is remaining encouraged and steadfast on getting this device replaced and back on his feet so we will be doing all that we can to assist him and encourage him for a full recovery. I will update you all as I know more.
I truly cant Thank You all enough (my ATT family) for your continued calls, thoughts, prayers and support.
P.S. Mike did not ask for this and in my humble opinion he should not have to ask.
Organizer and beneficiary
Mike Jones
Beneficiary