Saturday, January 11, 2020

New hospital? I feel a blog post coming on.

New adventures in hospitals definitely call for blog posts. I can't help but compare and contrast and want to put into words all that has transpired.

As most of you know, we went to the ER on Wednesday morning with a fever. We started at urgent care, which felt a little safer, but oxygen levels indicated our needs were more emergent. One of the reasons we were reluctant to go to the ER was immediately visible to me when I went inside.
I left Dom in the car to shield him from more germs. And I could practically see them flying around that room. Poor miserable souls. The room was packed with various illnesses. I held my breath.
I arranged to receive a phone call when they were ready to see Dom, and I speed raced him in a wheel chair when we were called. (Of course I received half a dozen spam calls all of which I answered not knowing the number that would be calling me.)
They saw him in triage where they took his vitals and some blood and other tests. Then we were sent back to our car to wait for a room in the ER.
The hours ticked by. I didn't plan for this at all. Basically, we got out of bed and rolled out without much thought to food. I couldn't go get food because we didn't want to lose our place in line so to speak. Dominic's lack of appetite increased with his illness, so we're dealing with more weight loss and getting calories in him is imperative. (Kicking myself now for not packing him food.)
But I'm getting better and better at asking for what I need. I needed food for Dom. So I reached out to his good friend and asked if he could deliver food. To the parking lot. Isn't that where all sick people with no appetite want to eat? In no time at all Bob arrived with a delicious hot soup and some crackers and thankfully, there's grandkids around because Dom put in a request for a kid drink.
All in all, we sat in the car for around five hours. We'd left before 10 in the morning, and it wasn't until 4 pm that we landed in a room in the ER. We did have blankets for him in the car, but the fever was keeping him warm.
I was so grateful they put Dom on priority for a room. They wheeled him past a very disgruntled nurse and woman who thought they were getting the room. I felt badly, but not really. Dom's needs are special. The last thing he needed was to pick up additional different germs. It was a bit of chaos from there. My mind was a bit of chaos. When we left in the morning, I wasn't thinking pneumonia. (Though I think I knew). I wasn't thinking hospitalization. I was thinking Urgent Care, prescription, bed. Easy peasy.
Nope.
Nope.
Nope.
Now, getting information from doctors in these emergent situations is always interesting. Interesting in the same way someone shows you their new furniture and you say it's interesting, or they've prepared a "special" meal for you and you say it's interesting.
I don't know what to make of the information being thrown at us. It's interesting.
Is it viral pneumonia or bacterial pneumonia? It makes a difference, but it's too soon to say. Is there also a flu bug? Can it be treated at home? All these questions swirling about.
The room is small. There's no toilet, as it's not a hospital room.
The ER is slammed. It's one of the busiest days they've had. People in beds lining the halls.In moments of boredom and waiting, Dom and I would catch snippets of things outside. A young man sat across from our doorway being looked at for muscle strain. He'd hurt himself lifting. We heard a nurse give him an ice pack to take home and suggest to him to take some otc pain killers and to take it easy for a bit. He asked her if he could go back in and lift tomorrow. I know it's mean, but we laughed. The humanity. The folly of youth. The soberness of experience. My head full of cotton as I'd not worried about my own food needs. I'd found chocolate almonds in my bag and devoured them. But, at some point, I realized this wasn't the infusion center in Sacramento. No one was coming by with a sandwich cart. We weren't being escorted into the hospital where the nurses waited on us hand and foot making sure we had our needs met.
It was evening, and I asked the next person to come into the room if there was any way Dom could get food. He looked at the clock and told me if we wanted food, we should have asked before 6:30. And that was it. No offer of any assistance. I was later taken into a room by the charge nurse who allowed me to go in and make myself a coffee and the fridge was full of jellos, puddings and sandwiches. I kind of want to throttle the guy who flippantly told me too late, no soup for you. Thankfully, I'd found the cafeteria once Dom was settled and bought him a selection of things, but I'd hoped he'd get a hot meal.
As the evening wore on, and there were still no beds available anywhere and it looked like Dom would be spending another night in the ER, as he had two and a half years ago when he was diagnosed with Leukemia. I really wanted him home away from all the germs. I couldn't see the point of him staying the night. I was terrified by the thought of him being taken by ambulance in the middle of the night to some far off hospital. The memories of driving to Sacramento completely bleary with grief and lack of sleep are still very close. But, after weighing all the options, going home would mean starting all over at the bottom of the line in the ER. So, with much discussion, we decided to stay. In the process of discussion, I did complain to his finally present nurse that part of the reason I wanted him home is because he was being so neglected. I shared with her how I'd asked about food and been brushed off. She was so sorry and became immediately more attentive and returned with puddings and jellos and drinks. So, I finally settled into leaving him at the ER.
With heavy heart, I drove home, remembering the drive a life time ago, leaving my muscular but scared man on a warm summer day in a bright green t shirt looking so handsome but frightened on a paper covered bed to be taken by ambulance the next morning to Sacramento.
This time I left a much more frail version, already in a hospital gown who was now a professional at this business and happy for me to go get rest.
The next morning, there was talk of sending him home to be followed up with by his physician. He would be on oral antibiotics. The two doctors that came in to see us were happy to send us home, and impressed with our dedication to getting him better.
And then.
More test results showed we weren't going home. Different strains of bacteria. Different concerns. Red flags all over his chart. "Don't send him home!" I was, of course, happy I did not take him against medical advice the night before. I was glad that at the very least, he did have a bed in the ER where they would treat him until an actual hospital bed opened up.
And as I've mentioned elsewhere, he did charm the socks off them. It was another busy day in the ER, nurses from the day before came in and told us how they went home, showered and fell asleep in their dinner, too tired to put their sweet babies in bed. And Dom smiled and twinkled his eyes at them and they melted.
Logistics were making my head swim at this point. Would he be moved? When? How far away? I watched the clock and tried to also make a plan to be home around dark to put Wallace the goat away. A friend met me with homemade soup in hand to enjoy later that night when I'd crash through the door. She took me home to regroup. A distracting and welcome visit over tea, and it was back in the saddle. A call came from Dom that he'd be heading to Novato by ambulance. Another call for a rx he needed. I was assured he wouldn't be leaving for over an hour, but just as our friend was dropping me off, the ambulance was wrapping him up. I'd balked at him being so sick he'd need an ambulance the night before. But moment by moment my resistance to all things bureaucratic and emergent was melting. My hopes that this would not need hospitalization had melted away and I buckled up for another ride.

I followed behind, way behind since I didn't qualify for the carpool lane.

Unlike Sacramento, where the main entrance to the hospital faces an inhospitable one way valet parking street. and is situated by an overpass and in the middle of a myriad of one way streets, this hospital is down a street that parallels a strip mall and theater and ends in a cul de sac where the hospital lies. The entrance just says "hospital".
The gals at the front desk were deep in conversation and when asked where the room is, I was told to take the elevator or the stairs up to the second floor. That's it. Nothing else. No then turn right, look for this, go to that. Just. Here's the stairs.
The staircase is rather grand, after all our time in Sacramento where the stairs were in echoey corridors where barely two people could walk side by side. This staircase is out in the open and wide. I still didn't feel as if I am in a hospital. No security. No one cared I was there.
There aren't really signs here. I arrived at the top of the stairs with no idea. My first instinct was wrong. I found the doctor's sleeping room.
After trying every turn, I found a very large lobby with living room furniture, a barren Christmas tree and a front desk with yet another person who didn't care that I was here. (Sacramento scans your ID and wants to know who you're visiting.) The lobby is carpeted and that alone feels cozier than the sterile Bone Marrow Transplant Unit where we lived for so many months.
I found his room and it's a two person room with an empty bed! No beds, no beds they told us as we waited in the ER. And here we are. Perhaps he needs a room to himself and it is by design that the other bed is empty.

The evening rounds doctor was in the room chatting with Dom when I arrived. He was so chatty! I was surprised. We're accustomed to Dr Carroll breezing in and out. This doctor wanted to know everything. He explained a little bit more in depth what was happening with Dom's tests, and gave us a crash course in microbiology.
In profile, he looked so much like a family member, I found myself creepily staring at him and wanting to snap a photo without his knowledge.
When he left, it was just so quiet. I almost thought we were the only people here. The BMT unit was a cacophony of nurse call chimes, beeps and chirps. Someone's infusion was always calling for attention and nurses would poke their heads in to see if it was Dom's machine. Here, it almost feels like a home for the elderly where everyone is tucked up by 8. And after many months of living in Sacramento, they became our community and there was always a friendly face. Here, we feel like foreigners in a strange land.
Later, a nurse with a big beautiful smile came in but was all business. No chat. I asked how late I could stay because I'm a rules girl, you know. She uncomfortably laughed and said she didn't care. As long as there wasn't another patient, I could sleep in the chair. Okay.
But I was going home. Dom seemed stable. He wasn't in an ICU, he was in the lowest level of care, which means he is stable. After months of waking to his coughing (from the gvhd) I wasn't ashamed to want a good night's sleep.

I did sleep like a champ, once I did drift off.

The next morning, I was anxious to get back to the hospital and get all the updates on Dom's condition. He woke up ready to eat breakfast, and that is a very big deal. As I shared elsewhere, the day in the hospital flew by.

And now, the second day has flown by, with two more to go.
We think.
We hope.

Even though I look out the window and see beautiful green hills instead of city buildings and highway, it's not our familiar place.
And our hope is to keep it that way.






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