So, getting up and going again after several hours in the ER last night myself. I started coughing yesterday and by 6pm it was so out of control that I was worrying about flu and whether I was safe to be near my husband. So off I went again (glad we live about eight minutes from the hospital) and sat there seven floors below him...waiting. Was there until midnight but they said it just presents as viral not bacterial - no fever, no other symptoms, just cough and runny nose. I can visit with a mask.
They are keeping him at least through the weekend because they still haven't figured out what is going on with his heart. I met with the social worker yesterday while he was having his bone scan. She said that the team had met that morning to discuss patients and no one suggested he be discharged. The doctor was around also and said he wanted to review all scans, blood work and heart monitor data trying to find an answer. Anxiety, stress and worry isn't likely to still be causing such an issue three days later.
It was helpful knowing what supports they will have in place. They can requisition equipment if we need for home care, support workers for relief and one of the bigger worries - financial guidance for any programs that might be available. DH is self employed and I help him with his business, but can't do the main function - it's specialised knowledge that he has. I will have to go back to work at some point but there are critical illness benefits for him and to a lesser degree - caregiver benefits for me.
We are looking at where in the house we can put him, since they don't want him climbing stairs. When discussing everything, she was asking about his walking ability and I realised that he has stumbled on the stairs fairly frequently in recent weeks - probably half a dozen times in a month or so. At the time we'd joke about it but now, obviously it's a consideration. Everything has to be considered now based on what he can and can't do. I'm thinking about all his jobs around the house that will have to be shared between the kids and I. A lot to take in. The dogs are being weird - looking for him, sniffing around his chairs and office. Everything is scary. I do have a group of friends that will help as needed. Two of them came the night he was admitted because we had both cars at the hospital, so they took his home. My brother went through three separate battles with cancer a couple of years ago. He said to appoint one person to coordinate anyone wanting to help out because that can be overwhelming. Yes - pretty much everything is right now. I'm thankful that the kids are on March break this week. They took the week off training.
Thank you all again for your prayers, thoughts and responses!
I’m so sorry you are going through this. I can relate somewhat to everything changing and still having to deal with kids and house and finances and life and how I’m going to get a wheelchair around the house and a million other things..it’s so incredibly overwhelming. No one realizes how overwhelming until you’re thrown into a situation like that.
My husband had a brain bleed last September. He was transferred from a local ER to a hospital 45-60 minutes away, which was great, because they were great, but the drive made it hard to get back and forth throughout the day. Was in ICU for 4 weeks(2 of them in a coma). I was gone from 9-9 every day. My kids still had school and football and cheer(they are a sophomore and a senior.) my daughter was applying to colleges. Had to fill out the fafsa. My husband is an accountant, I made him deal with all that. Exceot now I had to. I have a 13 year old dog that needed to be let out. He took care of all the bill paying..I totally forgot to pay our property taxes (thankfully remembered 15 days later)
I had to take family leave from my job..
I literally just left the back door open so the dog could come and go and people came in dropping off food those first few crazy days.
The doctors would ask if I had any questions and I would say I have no idea what to even ask..how do you prepare for something like this? I was absolutely lost and overwhelmed. My brother came with me to all the super important stuff so someone clearheaded was there.
My community set up a meal train..I had dinner delivered to a cooler on my porch every weekday from September to New Years. If anyone offers, accept. I’m not the type to feel comfortable with charity, but that was a lifesaver with 2 teenagers in the house.
My husband’s neurosurgeon gave me the best advice-he told me to compartmentalize. Don’t look back, don’t look left, don’t look right, don’t look too far down the road. just focus on here and now or else it gets overwhelming. That’s what I’ve been doing and it has helped tremendously.
They didn’t expect my husband to survive. A neurologist walked into his room that first day shrugged and said sorry, not good. He did survive in the hospital.
Then he was moved to rehab, where he stayed 8 weeks..they didn’t expect him to even be able to stand. He didn’t talk and couldn’t move his right arm or right leg. I fought and fought and fought and fought for him..seemed like every single day in rehab. I believed.
That guy who was in a coma, on a feeding tube, on a ventilator with a trach, is sitting in my living room watching TV and having a cup of tea and a cookie. That feeding tube is a distant memory. He walked up our front walk and into the house this afternoon. Wheelchair hasn’t been used except for long distances(mall) for a couple of weeks. I dont even keep it in the house anymore, stays in the car. He moved his right arm and hand this week. We went out to dinner last night. We are discussing going to the movies tomorrow. When I say discussing, I mean he’s talking to me, too.
The only thing left of that trach and oxygen combo is a small scar. I go to work every day and he is fine at home. He’s hoping to eventually go back to work one day, himself
Miracles happen.
Keep the faith.
Accept any help, even if it’s uncomfortable for you.
You’re in my thoughts and I’m praying for a good outcome for your husband.
fingers crossed for the best outcomes
Grace and peace to you and your husband in the days ahead and here's hoping for a better outcome than you're expecting.
