Is this the end?

[Bestfriends14]

Wayne is in the hospital for the third time in two months, with a fourth pneumonia. This time, however, he is unable to clear mucous and has battled with dropping O2 sats whenever he does the cough assist. Further, he is unable to be off his mask and needs to sleep sitting up. He's been in the hospital for a week, but instead of getting better, he's getting worse. Does this spell the end? They want to start him on hydromorphone, as well.

 

[Tomswife]

Do you have a relationship with one of the doctors, who you can talk to?
I am thinking of you and Wayne and you are in my prayers. This is impossibly difficult.

 

[lgelb]

I'm so sorry, Joanna. The aim of the hydromorphone would be to make his breathing more shallow and depress the coughing reflex so he does not need to cough as much. However, it does act centrally and can reduce his ability to take in enough O2, and the buildup of secretions will likely continue.

Depending on the dosage, he would be in effect sedated but it is short-acting so the dosage can be titrated, hopefully, to a sweet spot where he is more comfortable but aware. However, his response is not predictable at this stage, and he may not have much reserve left, so I would make your peace together before that or any other more sedating dosing regimen is initiated.

Many PALS can live for months to years on 24/7 BiPAP, but not being able to clear secretions would mean that ultimately the BiPAP would not be enough to help him initiate and complete his own breaths to the extent needed. I believe you have previously said that he does not want a trach.

Have they titrated the BiPAP to a set IPAP/EPAP (probably low PS, fixed pressure control instead of volume control)/completely triggered breaths that synch with his effort/titrated AVAPS rate? That might help with comfort/coughing also.

To answer your question, I am guessing this is at least the beginning of the end, so I would have that conversation with him and his docs, to reinforce that comfort is the primary goal at this stage.

--Laurie

 

[Bestfriends14]

@Tomswife, yes, the doctor was honest with me when I asked where Wayne was in the disease process. They've been wonderful with him, and for that I'm grateful.

@lgelb yes, they've fixed everything on the bipap, which was not done before, so now Wayne is much more comfortable. The clearing of mucous, however, is happening one to two times per hour, sometimes more.

When the time comes, there will be nothing invasive done and he will be made as comfy as possible.