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Danijela

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Dec 3, 2008
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PALS
Diagnosis
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Country
UK
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UK
City
Bolton
I'm writing this on zero sleep. L went into respiratory distress around 1am. Bipap was blowing air which was coming out through his mouth, unable to get to lungs. Alone, I struggled trying different masks on while he turned grey and I thought we were saying goodbye. It was horrific. I got cough assist and managed to blast his lungs several times which eventually allowed him to get a proper breath.

I sat up all night, listening to his erratic breathing. Called duty doctor and hospice. Hospice can admit him but what we really want are some night sits, someone in the room to allow me to sleep. This is the hardest thing I've ever done. He's scared and bursting into tears. He looks at me and the fear in his eyes breaks my heart. I've paid someone to take our son out for the day...

Any tips on dealing with respiratory distress as describes. Small doses of morphine? I'm petrified and totally alone. D
 

brooksea

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I'm so very sorry, Dani. Just know I'm holding your hand and have my arm around you.

I know the look you describe. The morphine will relieve his panic and help him relax.

Love to you.
 

Toto's Dorothy

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Emerald
Dani, my heart goes out to you. I'm unsure how your hos pice works in the UK, so I can only answer for here. I am not on hosp ice but I know several cals mentioned receiving a special package of morphine that can be given to their pals. When I was on morp hine, several months back, my insur ance paid for a woman who was a cna (certified nursing assistant but one that had been trained to handle iv's). This way I could stay in my home. Have you talked to ho spice about yours and L's wants? I would see that as not being an unreasonable solution and one that would be financially adequate.

As for respiratory distress, I only suffered one attack which led to my arrest. But thankfully, I was revived. Hopefully, CJ will see this and can answer your questions. I will send her a message on f b and get with you.

Again, I am so sorry you are alone. I do hope you get answers quickly.

Sending hugs and prayers,
 

vzandt

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570
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Diagnosis
04/2010
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N.H.
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Noneknown
I'm sorry Dani. I cant imagine what your going through. Seeing our pals hurt or scared or sad is heart breaking. I wish there was something I could do to help.
 

momap53

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Joined
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I'm so sorry that you guys are suffering. Some small doses of morphine may help to ease the situation. Will your hospice nurse come out to assess and to guide you? Many times in the US, they will send out an nurse for overnight shifts during a crisis.
 

rachelg

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Somerset
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Ok Dani, first of all well done to you for getting through this awful night.

Midazolam was Marks preferred way to relax and reduce panic and ease breathing. I administered this by injection but obviously only after training. It is available in Buccal form, you squeeze a small syringe full into the inside of the cheek and it releases, this instantly relaxes. Mark never had morphin

It is also what was supplied in the emergency box that we had here at home.

Marie Curie offered us night sits - arrive at 10pm through to 7am - G P or hospic should be able to arrange this for you.
 

Miss

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I have no words of wisdom for you. Just know that you are in my thoughts and prayers. The one time this happened to Terry, that was it. He really didn't panic, and it was very quick. I am so sorry that Laurence is having such a tough time. How brave you both are. I hope the Marie Curie folks can help you. Sending you love across the pond.
 

cervus

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Joined
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AB
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Hi Dani,
Bob didn't go in to respiratory distress the way you described. Perhaps low doses of morphine will help ease his breathing. Bob was also prescribed a very small dose of Ativan in case he got anxious towards the end but we didn't really feel we needed it so used it twice and then stopped. The morphine went through his PEG. You did a great job of getting you and your husband through this terrible ordeal. How scarey. Thinking of you and sending you strength. Yasmin.
 

joni51

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Dani, I know how scared you both must be, I wish I could do somethig, but I am with you in my thoughts. HUGS
 

skipper66

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IL
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SMALL TOWN IN
Praying for you Dani! Wish like everyone else that we could do more for you. We are all sending our love and support your way.
 

Nikki J

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Joined
Mar 22, 2012
Messages
8,435
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Dear Dani
No advice I'm afraid but your family is in my prayers. Hope that tonight is peaceful for you both
 

panguinjen

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Dani,
No advice from me either, just lots of hugs and prayers.

Jen
 

LizT

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Dani
Hugs and hugs and hugs and hugs and hugs to you and L. I do believe that morphine may help. Im so sorry this has happened, and I surely hope it doesnt happen again.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
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07/2007
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Dani I am praying for you and Laurence. Big hugs to you.
Laurel
 
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