Please pray for my best friend Steve who has muscular dystrophy

[dclfun]

Cathie- Just got back from a short trip to WDW and Steve was on my mind and in my prayers the entire time. I'm so glad to hear he's responding some and am hoping he continues to recover. Please let us know how he's doing.---Kathy

 

[ducklite]

He's in my prayers. What a good, dear friend you are!!

Anne

 

[cathie]

Happy Thanksgiving to everybody...Steve was transferred to Mass General Hospital in Boston today. He has an excellent neurologist who took the time to explain Steve's condition to us. We were never told at our local hospital that the X-rays taken when he arrived there found that Steve had a mucous plug in his lungs that caused him to lose oxygen to his brain. We are still unsure how long it took his attendant to call 911. This seems to be why he couldn't hold onto his airhose. I had just talked with Steve on the phone that morning about 45 minutes before this happened & he was fine. Life is so precious..you never know what is going to happen even from one hour to the next. Give your loved ones an extra hug on Thanksgiving Day & just thank them for being there. My sister Sue ( who came up from Florida with her family last night) will be going with me to Boston tomorrow to visit with Steve.The doctors said it's very serious & don't give him much hope of recovering. He's in God's hands, only a miracle will pull him through & I will continuing praying and thank all of you for your thoughts & prayers. God bless & have a great Thanksgiving. Cathie

 

[SueM in MN]

Thanks for the update.
Not a very hopeful one, but at least he is somewhere that it sounds like you have confidence in. Mucus plugs are a big problem, they can get into a position where little/no oxygen can get around them and they are sticky, so they are hard to remove.

Continued hopes for a good outcome.

 

[dclfun]

Cathie- I had been waiting for an update. I'm so sorry to hear that things aren't positive but Steve and his family/friends will continue to be in my prayers. I am a firm believer that things happen for a reason but I can't imagine the reason for something such as this. I have had similar things happen that could've ended tragically and only wonder about why I'm still here due only to a miracle. Here's hoping for a miracle for Steve. ---Kathy

 

[eternaldisneyfan]

What an awful thing to happen...I suffer with mucus plugs and am only alive because of the diligence of my parents. Only rigorous CPT, deep suctioning, and vent breaks get my plug up...Have they tried sodium bicarbonate? At UCSF PICU they use this to break up plugs that occlude endotracheal tubes or severe plugs in the lungs...just a thought. May Steve and you find peace-whatever happens...

Thinking of you,
Christamae

 

[coolwatup]

arg wish ye the best steve

 

[SueM in MN]

There are ways to break up mucus plugs (if someone knows about it). Sort of the most invasive is to do a bronchoscopy. Once someone has been without adequate oxygen long enough, the problem becomes whether the damage to the brain is permanent or can be reversed, not the mucus plug any more.

 

[cathie]

Steve had a brochoscopy this summer in Boston before they removed his trach. This incident was his first experience with a mucus plug at home & we don't know for sure how long his attendant took before calling 911. He's being transferred back to NH from Boston tomorrow. The neuro physician said there is nothing else they can do. I just keep wishing I was there for him that day (Friday is my only day off from caring for Steve). I know it's not my fault but I keep getting upset when I think if it could have been prevented. He seemed fine the night before & just 45 minutes before it happened I talked with him on the phone. Another thing bothering me is the fact that his son asked me how much Steve's house was worth & his son never spent much time with him & only came over if he wanted something. I can't believe he can be so cold & uncaring. Please pray that I can do what Steve would want me to do to help everybody through this. God bless, Cathie

 

[dclfun]

Cathie- I'm glad you know it wasn't your fault that you weren't with Steve the day this happened. Even if you were there it might not have been possible to remove the plug soon enough. I've had plugs that were so hardened and large that they've occluded one entire bronchus and have undergone many, many bronchoscopies to remove them as simple lavage and deep suctioning didn't help. There have been times when I was told that a plug was in my lung and had it shifted it's position even a tiny bit I'd have not been able to take in air due to a total occlusion. I was unconscious in ICU for three days one time before they realized that I wasn't getting enough oxygen due to a plug. I'm just thankful that you've taken care of Steve for so long and allowed him to live his life with enjoyment including trips to Disneyworld and on the Disney cruises. If he is aware at all I'm sure he's aware he's being surrounded by love. It's a shame his son verbalized something so hurtful but perhaps he can't afford emotionally to experience his feelings right now. It's tough on kids to lose a parent even if they are older "kids". Please keep us updated and Steve will continue to be in my family's prayers. ---Kathy

 

[SueM in MN]

Cathie- I'm glad you know it wasn't your fault that you weren't with Steve the day this happened. Even if you were there it might not have been possible to remove the plug soon enough. I've had plugs that were so hardened and large that they've occluded one entire bronchus and have undergone many, many bronchoscopies to remove them as simple lavage and deep suctioning didn't help. There have been times when I was told that a plug was in my lung and had it shifted it's position even a tiny bit I'd have not been able to take in air due to a total occlusion. I was unconscious in ICU for three days one time before they realized that I wasn't getting enough oxygen due to a plug. I'm just thankful that you've taken care of Steve for so long and allowed him to live his life with enjoyment including trips to Disneyworld and on the Disney cruises. If he is aware at all I'm sure he's aware he's being surrounded by love. It's a shame his son verbalized something so hurtful but perhaps he can't afford emotionally to experience his feelings right now. It's tough on kids to lose a parent even if they are older "kids". Please keep us updated and Steve will continue to be in my family's prayers. ---Kathy

very wise words.

 

[cathie]

Thanks again for the prayers & encouragement. Steve is very close to my heart. He spent more time with my kids than his own (his kids didn't live with him) and because of the care he needed & we pretty much adopted him. My family is really hurting over this, especially my son Travis (soccercruiser1287). I've been taking care of Steve since Travis was a toddler. We've all been on 4 Disney Cruises together..we were watching our 7 Day Western Cruise Video this evening. We're still praying for a miracle..keep those prayers going & thanks again. God bless Cathie

 

[cathie]

A Quick Update....Steve is still unconscious but stable. I'm heading to the hospital to visit him in a little while. Keep the prayers coming & thank you for the words of encouragement. God bless. Cathie

 

[MinnyGranny62]

Cathie I just found this thread and have already said prayers for Steve. Will keep him and you in my prayers.

 

[cathie]

Thanks for the continual prayers for Steve. I'll let him know how much everybody cares. God bless. Cathie

 

[Merriwind]

Thank you for continuing to update us, Cathie. You and Steve are in my thoughts often. Wishing you the best.

 

[lil.disney.princess]

aww how terribly sad..........sending lots of prayers and pixie dust Steves way xxxxxxxxxxxx

 

[Talking Hands]

Praying for Steve.

 

[cathie]

Hi Everybody, Things are about the same with Steve. He has some brain activity, but his doctor is not very compassionate. He's trying to convince Steve's son ( who was not involved in Steve's life & Steve's dad, also not involved in his life ,to disconnect life support...where were they when Steve was well?) This has been very difficult to deal with, especially for those of us who love Steve & were involved in his life. We see responses when we visit with him & talk to him, but most of the hospital staff says it's random responses. Steve's daughter, ex-wife & I want to do what Steve would want & give him some time...they seem to be in such a hurry to get things over with. He didn't have a legal Living Will so the doctor made the son go for guardianship. This whole situation is just breaking my heart. Please continue to pray that God will handle the situation in a peaceful manner in the way that Steve would want. God bless. Cathie

 

[spiceycat]

so sorry you are going through this.

I will say another prayer for Steve and you.