After my last post, I disappeared again. This was not by design. On May 29th, I was supposed to see my gastroenterologist in the afternoon. Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter). When he was here, he was concerned, because it looked like my line was getting infected. He felt that I needed to go straight to the emergency room. Knowing how darned difficult it is to get an appointment with my doctor, I went to her first (she and the hospital are about the same distance). When I checked in with the receptionist, I was quite early and I asked them to check with the doctor to see if she would prefer I proceed to the ER or wait for my appointment. Dr. S came out to see me and took one look at the site, which by then was red all the way up to my shoulder, and sent me to the ER. Argh.
Meanwhile, my husband was in California (the other side of the country) and was expected to be there for at least a month or more.
I knew a line infection probably meant 3-5 days in the hospital, so I arranged for extra babysitting and for my mother to spend the night with the kids. I arranged for people to take the kids for the weekend in case I was still in the hospital then. And I settled in for several hours in the ER waiting room. Once I got called back to see a doctor, she confirmed what I already knew: that I needed to be admitted for treatment, and that I could expect to wait 6 to 8 hours for a bed for admission. Fortunately, Hopkins has a beautiful new ER, so at least it was comfortable-ish.
The next day was a flurry of tests and cultures, etc. And shocking, but well-timed, news. My husband’s project in California had been overstaffed, so he was sent home after less than a week there, instead of the promised 6 week project. Well, at least that meant I didn’t need to worry about where to put the kids for the weekend. What we didn’t realize at the time was how crucial it would turn out that he ended up being home. Because my expected 3-5 day hospitalization turned out to be a 16 day saga in which I was barely lucid and have very little memory of even today. Thank heavens he was able to be there for most of the time I was inpatient.
Shortly after I was admitted, it appears that I aspirated something (we’re not sure what), and I got pneumonia (right after having gotten the pneumonia vaccine, ironically). I have no memory of this. I do remember going to interventional radiology to get a port put in (lower risk of infection with a port than a PICC or Hickman catheter) and being told I had a fever so I couldn’t get it that day. I imagine that was the start of the diagnosis of pneumonia, but from there, my memory is very spotty. Apparently after I got sick, I became quite delusional, had a psych consult called in, and ended up with a 24/7 babysitter.
Since getting discharged, I have spoken to numerous people who have told me that they talked to me at multiple points during my 16 day hospital stay – I have absolutely NO memory of these phone calls. Even a call with my grandmother. I went on a walk of the hospital nearly every day with my husband and I only remember a couple of those walks. Apparently, we bought a father’s day card for my father, which I only vaguely recall. Also, apparently I’m a smart-ass. When I finally got cleared to get a port (I don’t remember getting it – I just now have this weird thing implanted under my skin now, which I find really disconcerting!), apparently I said to the resident, “Don’t take this the wrong way or anything, but what year are you?” “Fifth year,” he said. ”Okay then, you’re good,” I replied. I can totally see THINKING that, but I can’t believe I actually said it.
I also received a blood transfusion (2 units of blood) because my hemoglobin level went down to 6.6. Bad news bears. Apparently I said to the nurse, “When my daughter was in the NICU and had a blood transfusion, they made me sign a consent form that said she had a 1 in 16,000 chance of getting Hepatitis B and a 1 in 60,000 chance of getting HIV [it might be the other way around], why aren’t you having ME sign a consent?” My husband doesn’t remember me getting a satisfying answer to that question. It must be covered under my general consent for treatment, which I signed upon admission. Frankly, I don’t even remember signing the general consent for treatment, so I’m not even sure that’s valid since I may not have been lucid at the time that I signed it!
Because of things that were said and done during my delirium, a condition of my discharge was that I see a therapist weekly for cognitive behavioral therapy to help me “cope better” with my illness. Well, to hell with them. I already had a perfectly good therapist, and I’d like to see any of the doctors cope as well as I do with not eating solid food for three years. But whatever. I will comply with weekly CBT, but not because I’m not coping well, but because I’m literally traumatized by the fact that I lost over a week of my life in my memory. I keep learning things about my time in the hospital that I have ZERO memory of and it is beyond disturbing. Not because the things that happened were disturbing in and of themselves, but because I have NO recollection of them whatsoever. Two rabbis have told me that they spoke to me several times and have reassured me, without prompting, that I said nothing inappropriate. (It worries me a little that they felt the need to tell me that I said nothing inappropriate when I didn’t ask that question…)
Suffice it to say, it’s taking a little while to readjust to life on the outside. I’m seeing a new therapist on Wednesday who was recommended by our developmental pediatrician – I trust him implicitly and he promised me that she wouldn’t be offended if I called her a shrinky-dink, which is crucial to our getting along. I still am recovering from the pneumonia (I’m told by multiple health care providers that it will take at least a month to fully clear – ugh!). I have a new feeding tube pump which gives 50% formula and 50% water flushes each hour in hopes of keeping me better hydrated without having to resort to IV fluids via my port (to keep my infection risk lower). And I see my gastroenterologist again on the 28th, so maybe she’ll have more answers for me.