Just a trip to the ER… (Part 1)
Recently, I spent 9 days in the hospital while doctors ran over 100 tests to try and find a diagnosis for what I was experiencing.
When we first decided to go in to the emergency room we didn’t think it would be anything crazy. We left in the morning with every intention of being home by dinner. I didn’t even give the two older kids hugs or say goodbye because they were so excited to spend the morning with grandma that they didn’t care I was leaving. Our local, small rural hospital ER wasn’t busy and the nurse checked us in and then took us back to our room. She hooked me up to all of the monitors - blood pressure cuff, pulse ox monitor, and a lot of stickers on my abdomen with wires coming out everywhere. She glanced at the monitor as it was beeping loudly. Always with a poker face, she calmly left the room. Later she would tell me that as she closed that door the first time she went straight to her co-workers and said “whatever that is - it is a true emergency”.
The doc came in to see me. We reviewed my symptoms. My vitals were concerning. My blood pressure was sky high and my heart rate was alarmingly low. Fluid was in my lungs and my other organs looked unwell. Other doctors were consulted and what seemed like a clear diagnosis in the beginning quickly became very confusing.
My priority through it all was that I could continue to breastfeed my daughter. I asked doctors at every turn if the meds they were giving me were safe for me to still breastfeed my baby. They worked with me and double checked everything. When they were going to take me back to do a chest CT with contrast the male technician casually and loudly said “yeah we recommend you just pump and dump for 24 hours after the test”.
Only a childless man would ever say that so casually.
I tried not to cry as I thought about my past experiences with pumping and giving my children a bottle. It had never worked in the past and my baby needed to eat. My nurse sensed my hesitation and emotional state and immediately stepped in and told me I didn’t have to do anything I didn’t want to and that they could double check if it was ok for me to breastfeed with iodine in my body. The kind doctor took the time to research about it and printed off a paper for me to read. He quietly came into my room and closed the door and discussed the research with me. We talked about the pros and cons and he let me decide. His kindness and sensitivity in that moment meant the world to me.
After about 10 hours of running tests, monitoring, and administering drugs we all agreed that it would be best for me to transfer down to the larger hospital about an hour away. They had more testing capabilities and more staff working to administer those tests. Calls were made and the hospital reserved a room for me in the ICU. But they said before I came down I needed to receive a lumbar tap to test my spinal fluid for infection.
At this point the main concern was that I was experiencing heart failure. The new hospital would be able to give me an echocardiogram which would help give more insight into the state of my heart. The hour drive down to the hospital was painful. The lumbar tap I had just received was not as easy as we had hoped. My spine was sore and I was developing a spinal headache from the procedure. I had to lay my chair flat the entire drive as sitting up only made the headache worse.
But the real pain was in my heart. I had never left my 2 year old for more than a few hours at a time. And my 4 year old had only spent 2 nights away from me in her entire life and those were spent with her dad. Now their dad was with me and our newborn and they were left with family at home. While I absolutely knew they would be well cared for and loved, it was heartbreaking to leave them without even having given them a hug.
My head was racing with thoughts of the worst kind. Was I going to die and leave my kids motherless? Was I going to survive but spend the rest of my life frequenting hospitals and wondering if my heart was going to fail at any moment? Would I get to go back to the lifestyle I enjoyed? How long would I be in the hospital for? Would I be able to keep my baby with me? Would I be able to keep breastfeeding? Would they even be able to find out what is wrong with me?
I cried the entire drive to the hospital as my newborn also cried in the backseat. Corey bit his fingernails the entire drive glancing over at me periodically to make sure I was ok and giving me reassuring hand squeezes.
When we parked at the hospital I insisted on feeding my daughter before we went in. I wanted to make sure her belly was full and I just wasn’t sure if that would be the last time I’d get to breastfeed her. I cried through that and then tried to put all the thoughts of my children to the side so I could dry my eyes and walk into the hospital with some sense of calm.
Once we talked with the nurse at the front desk I had Corey retrieve a wheelchair for me. I knew I was too weak to walk to our room. A security officer arrived to escort us to my room. When we arrived to the floor I could tell that I was the latest talk. Nurses from all over greeted me and said things like “Oh, is that the transfer? I was hoping she’d be here soon!” We arrived to the room and I got changed into the hospital gown and immediately there were 5 different people in the room. Some were hooking me up to monitors, some were asking me what I needed, and all were very intently and curiously listening to me recount my symptoms and experiences from the past 24 hours.
A couple of hours after we arrived at the hospital the nurse asked me if it was ok for some elders from the church to come by. I quickly said yes. A few minutes later two men came in - they looked like they might be father and son. They asked how we were doing and we shared a little about our experiences. I asked them to assist Corey in giving me a blessing. They were happy to do so and it was a very tender moment. I was reassured in the blessing that my children would be okay and I would be able to continue breastfeeding my baby. Receiving this blessing made me realize that I hadn’t taken the time to say a formal prayer since all of this had begun. I felt a bit bothered by that realization but too overwhelmed and tired to think much more about it.
That first night in the hospital I fell asleep quite quickly. It had been a desperately long day. But as anyone who has ever slept in a hospital will tell you - the nights are never uninterrupted. Around midnight a nurse came in to do something - take my vitals, draw my blood - I don’t remember. I was so tired. But after they finished and I tried to go back to sleep my breathing became very difficult. I was gasping for air and could not catch my breath. I called the nurse in and he recommended I sit my bed up a bit because I had fluid in my lungs. I did but the breathing didn’t improve. He came back in and set me up with oxygen. I waited for signs of improvement but still nothing. I moved my bed up higher and higher until I was sitting upright with oxygen. Still no improvement. It took all of my energy and concentration to just take another breath. I called the nurse in again. He said there wasn’t anything more he could do for me since the doctor had decided to wait on giving me a diuretic until morning so I wasn’t up all night peeing. I told the nurse I’d rather be up all night going pee than up all night unable to breathe. He talked to the night doctor and they gave me the meds.
I was very unsteady on my feet and getting up to go to the bathroom required me to unhook from all sorts of monitors and then hook back up when I was finished. Corey got up many times with me during that night to hold me steady as I went to the bathroom and help me with the cords and monitors. Thankfully, our newborn slept through it all. After a few hours I could finally catch my breath and didn’t have to think so hard in order to breathe. No one should ever have to think in order to breathe.
Having someone help you do the most simple and intimate task of going to the bathroom is humbling. It dawned on me that Corey has helped hold me steady while I go to the bathroom through all of my postpartum periods and here he was holding me steady again. Always a steady and solid person for me to lean on. I’ve never once had to help him to the bathroom or hold him steady in that way. I wonder if that will change one day. But to be loved and supported and cared for in such a simple and intimate way is special. Marriage is special.
I spent the next 4 days at that hospital. A new doctor was assigned to me each morning with a fresh sense of curiosity and opportunity for me to tell my story all over again. As the days progressed and more tests results came back normal, there was more confusion. One doctor would say one thing and another would say the opposite. Nurses that weren’t assigned to me would stop in to hear about my case and tell me to tell the doctor to check for specific rare and unusual things. My phone was blowing up with messages and phone calls from concerned people. Every relative or family friend that was a doctor was weighing in with their opinion. Eventually, doctors started telling me that we might never know what happened to me or why. My vitals didn’t improve no matter how many drugs they gave me. My blood pressure was still sailing through the sky while my heart rate was scraping the bottom of the barrel. The fluid in my lungs was mostly gone and I was breathing a bit better.
It was a Saturday and my heart ached to be home with my children. We agreed that I could go home if I saw my primary care doctor on Monday and continued seeing doctors to try to get to the bottom of things. They gave me a list of symptoms that would indicate I needed to come back to the hospital. I was so excited to finally leave.