Need your prayers please...........
- Thread starter PAChicky
- Start date
Last night they had to put John on dialysis because they were unhappy with his kidney output and he was running a slight fever. The fever went away and his kidneys started functioning much better. There has been no change otherwise. My nephew Dylan spent the evening with us tonight so he could have some playtime with the kids. He misses his daddy. My parents will be here shortly to pick him up. His mom Jen went back to the hospital today. She's having a hard time trying to make sure she spends enough time with Dylan vs. being at the hospital. This is my brother and Dylan.
Just talked to mom and got some not so good news. The tube that goes into the Femoral Artery for the VAD has damaged the nerves in his right leg and they are talking of amputation below the knee in the morning. They are also inserting a feeding tube today. They will not be taking him off the ventilator or waking him up in the meantime.
good grief...so sorry to hear all this chicky....stay strong....my brother was very close to death many years back(in multiple organ failure) and survived to live another 15 years or so.....nobody expected him to leave the hospital...
don`t get discouraged...
don`t get discouraged...
Chick--take care of yourself also, the best you can and realize you have many, many people out there supporting you and your family
Hoping for the best Chicky, we are all hoping for the best for your bother and your family :0008
We went to the hospital yesterday to see John. Nothing you see in the movies can prepare you for reality. I was able to hold his hand but the words I formed in my head just wouldn't come out. They amputated below the knee Thursday and unfortunately there was more damage than they originally thought so they had to leave the wound "open" and they will have to amputate above the knee at a later date. He was stable through the surgery and has been since. Mom said they are letting him "rest" all weekend to get ready for Monday and I forgot to ask what she meant by that. Since they didn't try to wean him off the vent and the VAD last week I think that's what's going on but I'm not 100 percent sure. My sister in law Jen is doing the best she can and my nephew still asks for daddy of course but they are trying to keep him as busy as possible. Thank you again for your continued prayers.
Some GOOD news! Yesterday they ran some tests on his heart. The good part is that the right side is looking much stronger but on a bad note the left side is not. They woke him up and Jen was there so he could see her. She talked to him and told him that he had a "heart issue" and that he has been in the hospital for a week. She was able to keep him calm, and he squeezed her hand when she was talking to him. He had tears in his eyes and tried to talk but the vent is in the way. He has some bad ulcers on his tongue that they are treating which were caused by the tube. They were going to keep him unsedated overnight and today they are hoping to take him off the vent. He does not know how bad it is yet or that he has lost his leg. He was awake when they did his heart biopsy yesterday and kind of gave them a "hard time" but I think it was 1 because he was scared and 2 he wants answers. So hopefully once he can talk he can tell us if anything was abnormal last Monday before this happened, but they doubt he will remember. Mom is supposed to call me tonight and let me know how the day went. I cried last night but they were tears of happiness.
PAChicky....
Very sorry to read this about your brother.....
Stay strong & think positive (know it is easier said than done)....
Good thoughts for your brother & his family....
Very sorry to read this about your brother.....
Stay strong & think positive (know it is easier said than done)....
Good thoughts for your brother & his family....
Wednesday they took him off the vent and he is now fully aware of everything that has happened to him including losing his leg and the possibility that he may lose more. The heart biopsy did not come back until late last night but We have a diagnosis finally!! They have diagnosed him with Lyme Carditis. Meaning at some point he got bit by a tick with Lyme Disease and it traveled to his heart. He is in the 1% of people that this happen to when bitten by a tick. They started him on antibiotics yesterday and it is unknown if the left side of the heart will recover or not. We are hopeful that it will and he will be ok but if not there is a chance he may still need a transplant if he ends up not being a candidate for the LVAD. Jen came home last night after being at the hospital all day and this morning she and Dylan are going to see his daddy. He's so excited! I feel like a weight has been lifted now that we know why it happened and we can get on the right path to getting him better.
Jen did say that yesterday she was in the hallway and two dr's stepped off the elevator and they were discussing a "rare case" that the one dr said he needed to show the other dr. They were talking about John. Jen told him he is now famous lol
I attached the link if anyone would like to read it. It is VERY RARE.
http://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html
Jen did say that yesterday she was in the hallway and two dr's stepped off the elevator and they were discussing a "rare case" that the one dr said he needed to show the other dr. They were talking about John. Jen told him he is now famous lol
I attached the link if anyone would like to read it. It is VERY RARE.
http://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html
I'm glad to hear your brother is getting better and they have a diagnosis. Lyme disease is not rare! For whatever reasons, I will not get into here but the CDC doesn't want to admit but this country has a Lyme epidemic. I live in Arkansas, the cases of Lyme that are reported show 0 cases in the state. I personally know about 25 people that are fighting this terrible disease, with one of them being my daughter who was diagnosed about 2 years ago! Good luck with treatment as this is a tricky and scary disease.
Sorry- I guess I should have defined what I meant by Rare. Not that Lyme Disease is rare but that Lyme Carditis is rare. The article says that 1% of all diagnosed Lyme Disease cases end up having Lyme Carditis. There were 30,000 cases last year alone and 3 of them were confirmed and all 3 died immediately. So now there are 4 confirmed cases of Lyme Carditis and he is still alive and for that we are thankful. (I guess that's why the dr's are calling him a "very rare case"-because he lived). I'm sorry about your daughter- I'm hoping they are doing everything possible for her.
