Pneumonia

[Danijela]

Hi All,

I have been posting about Laurence's chest and breathing issues. Things escalated dramatically last week and on Friday he had been admitted to a respiratory word in a big hospital, and started on IV antibiotics. X-ray and some blood tests have shown a really strong infection and pneumonia.

I have been using cough assist everyday because he could not stop coughing. I had to take our own machine to the hospital (they only have one machine in the entire hospital!) and he has been having some chest physio. Today he looked better and there is some talk of discharging him.

As it is normally the case here in the UK the neuro ward staff are 'not trained' to use cough assist and NIV, while repiratory ward staff do not understand ALS. There is a gap in provision of specialised care. It was judged best for Laurence to be on a respiratory ward. I give an example of what really concerns me.

Physio: 'so what is this?' (pointing at the NIV)
Me: 'Non-invasive ventilator, it helps L breathe'.
Physio: 'Does it use oxygen?'
Me: 'No.'
Physio: whispering 'oh I see... we have passed that point then...'
Me: 'No, oxygen can suffocate people with MND, it is usually given at the end stages or bled in small quantities...blah blah blah...'


Dani

 

[TedH5]

I am sorry that he has pneumonia and has been so sick. It is a reassuring sign that he is looking better and there is talk of discharging him. He is very lucky to have you by his side. I will pray for both of you.

Stay strong and keep the faith.

 

[Felica]

Stay strong Dani. Sounds like you are his life line. I Am praying. For both you. Hang in there. Sending hugs
Felica

 

[pmbenb83]

He is so lucky to have you. I'm so glad you were with him in the hospital. We had the same problem when my husband had pneumonia here in the states. Our hospital didn't have a cough assist machine and the staff didn't know what it was. The nurse told me to go home that he would be okay and would push the button if he needed her. I looked at her and said that would be great if he could use his arms....IDIOT! Of course I stayed both nights and ordered a cough assist the next day. I'm really at a loss for our medical community... and I work for a large hospital system in Northern Virginia.

I hope he feels better and gets to come home soon.

 

[laurel]

Sorry to hear that Lawrence has been so sick Dani. It's rather embarrassing how ignorant the medical professionals are about ALS. Sure makes it damned hard on the care givers to have any trust at all--you can't even have a break when hubby is under the care of others. A big hug for you.
Laurel

 

[Barbie]

Wow Dani--how difficult for thetwo of you. Thank goodness you are smart and strong and proactive with the doctors. Hang in there...

 

[SixthKid]

Dani~ so sorry for what your husband & you are going thru. Lots of prayers coming your way along with a huge >>>>HUG<<<<


So I have a dumb question:

being on oxygen w/MND can suffocate? I guess I don't understand :?: My Dad has been on oxygen ever since his last stunt in the hospital (he's at home now just where he wants to be ) & his breathing seems to be not so great these days....ugh!

I still have so much to learn..........

 

[momap53]

Dani, so glad that L is looking better and there's talk of discharge. I know that this has been a really rough time for your family. Alot of med people are just never exposed to an ALS patient and don't have an opportunity to learn first hand about their special needs. I have alot of fears about using the local ER or requiring a hospital stay for those very reasons. What a wonderful advocate you are for your PALS. I'm so grateful to you for taking the time to help educate those that come in contact with Laurence. Will keep you guys in my prayers.

 

[Danijela]

Hi All, Thanks for kind thoughts and good wishes. L managed more time off vent today and had only one coughing fit. He's getting a little restless.

Re oxygen question- the problem with
ALS is inability to blow out/breathe out CO2. Giving O2 therefore means further production/retention of CO2 which Pals struggle to get rid off. The only two exceptions I'm aware if o2 is needed due to another condition and 'bled in' in small quantities, and in end if life care in combination with morphine and other palliative care interventions.

 

[LizT]

Glad L is getting better, Dani!

Wanted to add about the oxygen- it is also sometimes used when the PALS is already on the ventilator. My PALS is on O2 24/7 and has been since he had his trach done and went on the vent. Its ok for him because his own breathing ability is completly gone.

 

[Mick n Ang]

Hi Danni
Sorry to hear about L, please tell me he is at Hope or Wythenshaw though and not Bolton Hospital. Hope hes over the worst and will soon be home. Thinking of you all xxx Ang

 

[Kevalyn]

Danijela, how is L doing today? You've been on my mind all day.

Kev

 

[Danijela]

Ang, he's at Hope.

Kev, he seemed stable today. I saw him twice. We had a strike of public service workers today which affected hospitals as staff walked out for the first time in 20 or so years. Tricky situation and short staffed at his ward. Dani

 

[Georgia Peach]

WOW. That is horrible to know that the nurses are striking! When my husband was in ICU for the pulmonary embolism there was an emergency on his floor and they didn't come for his calls for over 30 minutes when he needed a pain pill for kidney stones.

Just to let you know my Scott has been on antibiotics twice for two rounds of pneumonia and he's still sounds wheezy in one lung. Thinking of you both.

 

[Danijela]

Thanks, it was worryng seeng Laurence still in bed at noon, looking messy and frustrated that he had been waiting for somebody to hoist him in his chair for 5 hours. He did, however, listen to my advice and had a haircut at a hospital salon yesterday PM. The ward he is on is brand new, really good facilities (e.g. jacuzzi bath with special lift/chair) but sadly those facilities are not used because staff are just too busy and are even struggling to do the basics (meds, feeding). I work in the public sector myself and did support the strike, but really tough on hospital patients.

D