Mother on ventilator

[relaygirl]

Hi y'all, I have never heard of Wegener's before this week. My precious mother in law (67) collapsed last week at the doctor's office. She was going in for persistent URI. They live in a small town with a regional hospital. She was there on oxygen for 2 days and then they moved her to Jewish in Louisville. Her blood ox levels never got out of the 70's. They thought it was congestive heart failure, they threw around pneumonia and a few other things. Finally they did the kidney biopsy and it came back positive for Weg. Because her breathing never got better they put her under and on the ventilator in ICU. She is still under-this is day 3. She has had plasma 2x a day while in ICU. They said now that her lungs never cleared with antibiotics or diuretics because it is blood from the Weg. I am wondering if anyone could tell me what to expect in the future-I don't see others on here with just a quick look that have been put under like this. When they wake her up-how long will she be in the hospital? Will she go into a rehab facility after that or can she go home? It would seem these are questions for the doctors but there are like 10 of them in and out and know one says anything!!!

[Dirty Don]

Hi relay girl, glad you found us, sorry your mom in law is WG now. I was under for 10 days with 'fractured glass' lungs. Was an induced coma like your mother in law's, ventilator, 6x plasma, drugs hanging all around me. I survived...was never given more than a 50-50 chance. Lungs cleared, blood got better, am left with some sinus damage and neuropathy in feet. I spent a few more days in ICU till I could hold my own, then 4 days in recovery before I was allowed to go home. Then another 6 mos of physical rehab...now, almost 2 years later, am in medical remission with thoughts of getting off drugs. Still not who I was, but am better. Have strength and hope for your mom. Please make sure you have WG experienced or consulted docs working for her. Best to you both.

[annekat]

Welcome to the forum, and I'm very sorry you have a reason to come here. I know there are people on here who have had a very tough time with their lungs, kidneys, and other complications and spent time gravely ill in the hospital. They will tell you their stories and offer some encouragement. Keep us posted and I look forward to an update on your mother in law. I'm wishing the best for her.

[drz]

It sounds like a tough situation for you. I can identify with your mother's situation as mine was some what similar. I spent about 10 days too in a drug induced coma, umpteen plasma exchanges, heavy bleeding in the lungs, loss of kidney function, and umpteen trips in and out of ICU. I ended up spending two months as an in-patient in hospitals including two weeks at a rehab hospital, a brief three day trial at going home before spending my Summer in a nursing home doing rehab work and working on a long slow recovery. My daughter coordinated my health care during the critical stages as I too had several dozen doctors involved in my care from over a half dozen departments as it was a large teaching hospital with dozens of resident doctors who did most of the care but it was a full time job for several weeks for her to do so.

In my case there was a primary care doctor assigned to the patient or unit who writes the orders. All the other dozen plus doctors were consultants who gave recommendations. They would have regular meetings each day to sort out conflicting recommendations for my treatment which happened a lot. One treatment might be helpful for one body system but dangerous to another system. If they couldn't reach a consensus the decision was up to the primary care doctor. My daughter had to approved the treatment plan for my care since she was my designated health care director and she spent a lot of time getting input from various doctors and monitoring my care and trying to keep them all on the same page. I guess one advantage of having a rather rare disease in a large teaching hospital is getting lots of extra attention from being exhibit A for GPA disease.

Tell the staff you want to met with doctor directing her care and ask your questions. You are entitled to information about your mother-in-law if she has given permission for them to share it. Who is her designated decision maker when she is unable to make decisions about her health care? As to what will happen no one can say as each person is different and it is watch and wait and wait and see what happens. The doctors can share their anticipated plans and hoped for outcome for her and then you will have to watch and see if it happens. I know my case was very extreme with a lot of crises before things finally got more stable but it is normal to have some ups and downs during the initial treatment if correct diagnosis has been delay. It may be awhile before things finally settle down a bit. Best wishes for a good recovery.

[relaygirl]

Thanks for the input, y'all! My mother in law is awake now-they pulled the tube yesterday, thank goodness. She is in afib and has a lot of blood pressure issues right now. My sister in law says the ICU nursing team is amazing at Jewish. I am going up tomorrow now that my kids are out of school to be with her in the hospital. I think right now they are trying to stabilize her systems and then I guess we will see what comes next. I worry about her continued treatment-a major issue she has dealt with for years is joint pain. Her feet and her knees are 4 x the size they should be. It is crazy that no one ever looked into this as auto immune-they replaced her knees and it did not help. She has gout and it treated for that but she never, never had any relief from it. She moves and was somewhat active but I know it cost her. She is a tough woman and would not let pain stop her.