Please pray for my best friend Steve who has muscular dystrophy [Archive] - The DIS Discussion Forums

cathie

11-14-2005, 10:47 PM

We are planning to fly to Florida in December with my buddy Steve (it will be his first flight, he has MD with respiratory failure & uses a ventilator on his wheelchair) He had a very unfortunate incident on Friday while with another attendant..he lost his air hose to his vent & we still do not know how long he went without air..the attendant is an older gentleman who may have fallen asleep. He is presently unconscious in the Special Care Unit at a local hospital. His father & his son are very negative but his daughter & I have seen signs of him responding to us. Please pray that he will show more signs of regaining consciousness & that his family members will have more faith. Thank you Cathie :sad:

SueM in MN

11-14-2005, 11:35 PM

How heartbreaking.
I'll keep him in my thoughts and prayers.

Selket

11-15-2005, 09:30 AM

I'm so sorry to hear about your friend. I'll keep you both in my thoughts. :rose:

JohnnySharp2

11-15-2005, 09:51 AM

Best wishes from England, UK

Merriwind

11-15-2005, 11:06 AM

How sad! Best wishes...

dclfun

11-15-2005, 11:29 AM

Cathie- I will certainly be praying for Steve. I live in fear of being detached from my vent, which is one reason I'm so fortunate to have my service dog there to alert someone and/or reattach the hose. Please keep us posted with his progress. ---Kathy

cathie

11-15-2005, 12:16 PM

Thank you Kathy, I know that you more than anybody would understand the trauma he went through. We still don't know exactly what happened but i talked to him less than 45 minutes before this happened & he was fine. The older gentleman caring for him may have fallen asleep or didn't notice if one of the air hoses became disconnected. He is still unconscious but all of his vitals are good. He responded to his daughter & myself last night & we are in continual prayer for his complete recovery & healing. Thank you for your prayers..I will keep everyone updated. God bless Cathie :worried:

hallie615

11-15-2005, 02:42 PM

keeping you in my prayers, and sending you all some pixy dust :wizard: :wizard:

cathie

11-16-2005, 04:45 PM

Steve is stable right now, but still unconscious. We are noticing more responses as we spend time with him & talk to him. Below is a picture of him with myself & Miranda on his 48th Birthday 11-02-05 just 2 weeks ago. He's a great guy & he's been through so much..please continue to pray for him. Thanks & God bless :sad1:

mbb

11-17-2005, 01:03 PM

a little pixie dust, too :goodvibes

:sunny:

Karalynn

11-17-2005, 10:30 PM

Steve is definately in my prayers!!!!! Thank you for keeping us updated, be sure to let him know we're all sending prayers and pixie dust!! :grouphug:

Figment's friends

11-17-2005, 10:51 PM

All of our thoughts are with you! Our family will pray for a quick and complete recovery. :grouphug:

Mom to Jordan

11-18-2005, 11:28 AM

spiceycat

11-18-2005, 01:05 PM

:rose:
pixie dust
:wizard: :wizard: :wizard: :wizard:

your friend is in my prayers.

I have faith.

lisaviolet

11-18-2005, 02:54 PM

Best wishes and prayers to Steve. And to you. All the best.

Lisa

cathie

11-18-2005, 03:33 PM

Prayers for your friend!
Our friend's ten year old son has MD and his prognosis is so poor that it is wonderful to see someone your friends age. Do you know what type of MD he has??
Zachary has the most debillitaing form and has lost all motor funtion in his legs and his upper arm strength is going fast. Such a sad and cruel disease.

Steve has Limb-Girdle MD. It affects young adulthood (he had a normal childhood), usually mid 20's to early 30's. He also has respiratory failure & has been ventilator dependent for the past 20 years. He just celebrated his 48th birthday on Nov.2. You're right it's a sad & cruel disease. I've been his best friend & caretaker for 14 yrs. He uses his vent hose non-invasively & while being cared for by an older gentleman he lost his airhose & we don't know what happened. He's been unconscious for a week..it happened on Nov. 11. He has shown a few responses when we talk to him but we're praying for him to regain consciousness soon. I'll be praying for your friend's son..thanks for the prayers for Steve & keep them coming. God Bless. Cathie

BCV23

11-18-2005, 10:11 PM

Steve is in my thoughts and prayers as are all of those who love and care for him. What a very sad situation.

wuv tigger

11-19-2005, 09:04 PM

I prayed for him today!

Judy

bairdbeth

11-19-2005, 09:56 PM

Prayers and pixie dust sent to Steve. I have volunteered with MDA for 28 years and have attended 22 camps as a counselor. MD comes in many forms and is very devastating. One of my best friends has SMA. It is very hard to see them go through rough times. Hoping for the best! Positive thinking and prayers can produce miracles! :wave:

MN Dis Fans

11-19-2005, 09:57 PM

We're praying too. God bless Steve and all who care about him.

dclfun

11-20-2005, 07:57 AM

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

11-20-2005, 08:30 AM

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

Anne

cathie

11-23-2005, 11:48 PM

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 :angel:

SueM in MN

11-24-2005, 09:00 AM

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

11-24-2005, 02:20 PM

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

11-24-2005, 04:00 PM

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

11-24-2005, 04:18 PM

arg wish ye the best steve

SueM in MN

11-24-2005, 04:39 PM

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

11-24-2005, 10:26 PM

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

11-25-2005, 09:37 AM

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

11-25-2005, 09:59 AM

cathie

11-26-2005, 11:58 PM

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

11-29-2005, 06:01 PM

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

11-29-2005, 06:24 PM

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

cathie

12-01-2005, 06:33 PM

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

Merriwind

12-01-2005, 10:43 PM

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

lil.disney.princess

12-02-2005, 03:24 PM

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

Talking Hands

12-02-2005, 05:34 PM

Praying for Steve.

cathie

12-07-2005, 11:56 AM

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 :grouphug:

spiceycat

12-07-2005, 12:41 PM

so sorry you are going through this.

I will say another prayer for Steve and you.

SueM in MN

12-07-2005, 02:07 PM

Thanks for the update. It's a very hard situation to be in.
I'll be thinking of all the people who love him and hope for the best.

dclfun

12-08-2005, 07:45 AM

Oh Cathie.....my heart just aches for you and Steve. I agree with letting him have some more time since recovery often isn't "instant". ----Kathy

cathie

12-09-2005, 03:11 PM

Hi Everybody, Things are the same with Steve. He' ll be transferred soon from the SCU at the hospital where he is at to a nursing facility that takes ventilator patients (unfortunately there is only one place here in NH & they only have 6 beds available for vent. patients so we are waiting to hear from them) The only other alternative is in Mass, probably Boston, where he would get great care but the family doesn't want to travel to visit him ( it's about 45 miles from here) I don't mind the drive if he's getting good care. I'll be going up to visit him tonight at the hospital after our roads are plowed. We're in the middle of a Nor'Easter, so for those of you in the south , enjoy it, it's miserable up here. Thanks for the continual prayers & good wishes. God bless. Cathie :grouphug:

MinnyGranny62

12-09-2005, 05:44 PM

:grouphug: Cathie.....here's hoping that your visit went well today.
You are often in my prayers. Shirley

cometzero

12-10-2005, 03:46 PM

I just wanted to say I am so sorry. I can't imagine how hard this must be for all that love Steve, I will keep everyone in my prayers, Lyn www.caringbridge.org/nj/justinw

doxdogy

12-10-2005, 05:15 PM

I am so sorry. Steve is in my prayers.

cathie

12-15-2005, 08:11 AM

Good Morning Everybody, Steve's daughter & I are going to the court this morning to file a response to a petition to remove life support from Steve...this was brought about by Steve's Dad who is an extremely cold & bitter man. Karen, Steve's daughter was promised by the court last week that 30 Days would be allowed to see if there was any change in Steve's condition. The hospital wants him moved out of the SCU & since the only alternative is going to Boston, Steve's father and Steve's son, who are both guardians, don't want to be bothered to drive there. Looks like they are trying to just end things very quickly so they don't have to bother to move him. Please keep Steve & his daughter in your prayers. She was promised time with her dad & they are trying to take it away. Steve had a document that wasn't notorized stating he wanting me to be his power of attorney, so the court has been sending me all of the court hearing papers. Such a sad situation that family members can be so heartless. I'll keep everyone posted . God Bless! Cathie

SueM in MN

12-15-2005, 08:46 AM

Sorry to hear the update is not a happy one. Sending best wishes and prayers to at least allow your petition to have a fair hearing.
It is never a happy situation to withdraw ventilator support, but even more so if the family is divided.

michelle9343

12-15-2005, 03:57 PM

:grouphug: I want you to know that I will keep you all in my prayers.

MinnyGranny62

12-16-2005, 07:24 PM

How is Steve doing? Both of you are in my prayers.
Shirley

momof2inPA

12-16-2005, 10:03 PM

Hopefully, the court will overlook the lack of a notary and grant Steve's wishes to have you as the guardian. Prayers for Steve, you, your family, and his family.

cathie

12-17-2005, 11:04 PM

Hi Everybody! Being the weekend, nothing has changed but Steve is stable. Hoefully on Monday we will hear something about when he will be transferred to a nursing facility that takes ventilator patients. He looks peaceful & his color is good. They play Christmas music in his room which makes the atmosphere relaxing. I'll keep you posted when I hear anything. Have a good weekend. God bless. Cathie

dclfun

12-18-2005, 07:39 AM

Cathie- thanks for the updates. Steve is still in my prayers. I certainly hope his wish to have you as his guardian is granted. ---Kathy

SueM in MN

12-18-2005, 07:57 AM

Thankd for the update. Does that mean that you and the daughter were successful in court (or maybe don't know yet, but at least feel like you were listened to) or just that the hospital discharge planners were efficient and found him someplace to go?

At any rate, it's a more positive report than the last one and I'll keep him and the people who love him in my prayers.

Karalynn

12-18-2005, 08:43 PM

:hug: Steve is in my prayers!!! Thank you for keeping us updated.

MinnyGranny62

12-20-2005, 06:15 PM

Hoping that Steve still seems to be peaceful. Maybe
the Christmas music is helping him. Shirley :grouphug:

RaySharpton

12-21-2005, 07:30 PM

Prayers for Steve and your whole family. It must be a very difficult time for you and all of his loved ones.

Sincerely, Ray

DutchsMommy

12-21-2005, 07:57 PM

Thoughts and prayers are with you.

In all the activity of the season and all you are going through with Steve, his family etc, please take a minute to give yourself a hug. Reading through your story I couldn't help but feel that you are a really good person 'one of the good ones' as they say - and I hope you realize that. My experience with people I consider a 'good one' is they often don't think of themselves that way and I think you should know that others see you that way...just a little pick-me-up from some of lifes downs. :grouphug:

cathie

12-22-2005, 06:12 PM

Thank you for the words of encouragement! It's been difficult going through this, especially during the holidays. Steve has been a part of my last 14 Christmas celebrations & I really miss him. We're leaving for Florida tomorrow morning to spend Christmas with my sister & her family. Steve was supposed to go with us ( his first flight! ). Well Steve was transferred today to the Health Care facility near the hospital. I'm going to visit him with his daughter in a few minutes. Have a great Christmas everybody..give all of your loved ones a big hug! God bless, Cathie

SueM in MN

12-22-2005, 11:08 PM

thanks for the update.
Hope you have a good time on your trip (despite it not being what you had planned).

cathie

12-27-2005, 09:39 PM

Hope everybody had a great Christmas. I'm at my sister's in Florida, we're heading to WDW for the day tomorrow. I've been keeping in touch with Steve's daughter & he's still the same. The nursing facility he's at is very nice. We missed him a lot on Christmas & every day we think of him. I know sometimes there are miracles on this earth & that is up to God. He's knows the desires of our hearts & we don't give up. I'll talk to you guys when I get home ( but I'd rather stay in Florida..much nicer) Take care. Cathie

Selket

12-27-2005, 09:55 PM

I just wanted to say (as I hadn't responded except to your original post) that I've continued reading the updates and your family and Steve's are in my thoughts and prayers.

I hope you have a good day at the parks tomorrow.

luv2boys

12-27-2005, 11:28 PM

Thinking of Steve and your family.

MinnyGranny62

12-28-2005, 05:37 PM

Cathie, thanks for the updates. You and Steve are still in my prayers.
May God Bless you and yours. Shirley

cathie

12-31-2005, 07:00 PM

Happy New Year Everybody! I'll be going to visit Steve this evening..he's still the same & looks great.. ( I stopped in for a brief visit this afternoon) we're still hoping for a miracle. Florida was great, nice & warm..hoping to move there soon. The kids & I were able to ride up front on the monorail to Epcot..we got our monorail co-pilot license! The staff at Steve's nursing facility are very nice. It helps to have cheery people around. Well, have a great New Years Eve & Day. God bless, Cathie

SueM in MN

12-31-2005, 07:28 PM

thanks for the update. It sounds like he at least is in a good place.

dclfun

01-01-2006, 09:57 AM

Yes Cathie, thanks for the update, and send my love to Steve. ---Kathy

cathie

01-07-2006, 04:19 PM

Hi Everybody! Steve is opening his eyes more & moving his jaw like he wants to say something. ( he has a trach without a speaking valve so he can't talk right now)). Last night when I was visiting him he started to pucker up & wanted to cry when I was telling him various things that had been going on in my life. ( My son Travis was in a car accident on Thursday..he was hit by a snowplow & his car was totalled , but thank God he had his seatbelt on & only received a few scrapes!) I was up there visiting Steve this afternoon & he responded the same as last night. We are still praying for a miracle & always talk positive, especially in his room. There is a court date on January 18th at 10AM & I'm not exactly sure what it's all about but I will be there. Steve's son never visits him anymore & he's the one that was appointed guardian of his health care decisions. He is not being very responsible at all & never spent any time with his dad when he was at home. His daughter Karen & I and his father visit every day. I'm going to stop by & see him before I go to work tonight. Please keep the whole situation in your prayers. God bless & Happy New Year to everyone. Cathie

SueM in MN

01-07-2006, 06:46 PM

sounds like some good news.

I'll be thinking good thoughts for the Jan. 18th hearing.

PS - sorry to hear about your son's car, but glad to hear he is OK. My DH totaled his car a few days before Christmas, but was also OK.

cathie

01-17-2006, 04:54 PM

Hi Everybody, There is a court hearing tomorrow in regards to Steve's guardianship & other issues. Steve has been opening his eyes more & follows us when we move around his room. His daughter Karen wants to take over as guardian of her father since Steve's son doesn't really want to be involved. This is what we are praying for. Steve's dad still seems to want to disconnect his life support even though we have seen improvements. Please keep this whole matter in your prayers. I will be at the hearing..it's at 10AM. Thank you & God bless. Cathie

SueOKW

01-17-2006, 05:33 PM

I will be thinking of you all morning - and especially sending prayers at 10:00.

bairdbeth

01-17-2006, 08:56 PM

Prayers sent for change of guardianship. :wave:

SueM in MN

01-17-2006, 10:48 PM

good luck at the hearing

dclfun

01-18-2006, 07:30 AM

Cathie- Good luck! I can't imagine they'd even consider disconnecting life support with signs of improvement. I'm sooo glad to know there's even a glimmer of hope. ---Kathy

kjncmom

01-18-2006, 08:44 AM

just took the time to read this entire thread. Thank God for angels like you. I have a disabled daughter, and I can only hope and pray that if and when I cant be there to care for her, she gets a guardian angel like you who will genuinely care about her and want the best life can offer her.
It is almost 9 am, here in maine. Court for you will be in an hour. I want you to know that I am sending prayers through the ice and rain that you will be handed a victory today. I believe in miracles, and I believe love can save anyone. All my prayers for all of you. Michelle

MinnyGranny62

01-18-2006, 07:02 PM

:flower: Cathie...hope that everything turned out all right. My prayers are with you. Shirley

hallie615

01-19-2006, 08:50 AM

How did the hearing go?? Hope it went well. :flower: my prayers are with you.

cathie

01-21-2006, 06:07 PM

The hearing went well, Steve's daughter has petitioned the court for guardianship of her dad. The judge was very compassionate. She listened to Karen & I about the new responses we've seen from Steve and continued the case until March 16. We'll be getting a new doctor to evaluate Steve and the new responses we are seeing. Karen was so hurt by her grandfather's (Steve's dad) cold attitude, but the judge basically shot him down & said he had no right to disconnect life support at this time. Continue to pray for Steve, he cries at times and then he has peaceful times & sometimes he acts stressed. With Karen as guardian, things will head in a positive direction. Thanks for the support, I'll keep you updated. Cathie pixiedust:

MinnyGranny62

01-21-2006, 06:16 PM

:grouphug: My prayers are always with you and Steve. Shirley

kjncmom

01-21-2006, 10:47 PM

Im tickled for you. Hoping Steve's miracle is coming soon.

SueM in MN

01-22-2006, 10:25 AM

I missed your update yesterday. Glad to hear things went well in the hearing.
Keeping up the good thoughts.

CharleyUK

02-24-2006, 04:46 PM

Hi Cathie

Just sending my best wishes to you all. Only if you are able please let us know how you are all doing. I stumbled across this thread by accident but am keeping you in my thoughts. I believe life sends the hardest things to the stongest people.