My friend Ashley came over at 8am Thursday, and Seth left my house for work. While Ash was with the kids, I ran up to the hospital to get a couple of hours' visiting time in before Ash needed to leave and I needed to try to nap Linc.
With no results from the endoscopy or the
colonoscopy that had been performed the day before, there was talk of
the capsule (what they called the camera pill they wanted Kev to take as
an outpatient). Throughout Thursday, the bleeding ceased and Kev showed
a lot of improvement. We were optimistic a clot had formed and stopped
the bleeding from a biopsy site (which is where we all assumed the
bleeding must have been coming from).
Thursday, Kev was
moved from CCU to a regular room. After Linc's morning nap, I left the
kids with another sitter at my house and drove back to the
hospital. Seth had been with Kev most of the day after Matt left, and we
were trying to keep someone with him at all times.
With so little blood circulating in his body, Kev's lactic acid buildup had reached a slightly elevated level. It had stabilized to a more normal count with the transfusion, and the GI bleeding had subsided overnight (on its own). There didn't appear to be any reason for him to stay in CCU, so while I was home with the kids for lunch and naps, Kev was moved to a bed on the 5th floor (the GI floor was full, so he was moved to orthopedics).
It was that afternoon I spoke with Seth about the possibility this could be a cancer, or a tumor that had yet to be undetected since no one seemed to have access to the biopsy results from the previous Friday's colonoscopy. We also discussed how important it was to be kind but aggressive regarding Kev's care. Although he appeared to be doing really well on Thursday, and there was talk of discharging him Friday, Seth and I decided we would push for Kev to stay in the hospital until a diagnosis was reached. We feared Kev would come home and then start bleeding again. It was this day when
Seth and I started to come out of just plain survival mode and really
get proactive. We worried about malpractice and being assertive and in
constant communication with the staff. I kept reminding myself that a
complacent patient is a dead patient.
I returned to the hospital Thursday afternoon while I had a babysitter at my house. I was planning to spend the night after first returning back home for the bedtime routine. My sister and her husband Jose were going to be at my house around 6 or 630 Thursday night so I could head to St. Mark's for the third time that day. It was exhausting, although we were optimistic about Kev feeling better. Unfortunately, him feeling better actually presented more problems- the doctors no longer felt a pressing need to explore other options. They were counting on the outpatient capsule to provide answers for the GI bleed. Seth and I still felt really uncomfortable about that.
When I returned for my night in the hospital, I had an extremely hard time turning my mind off and going to sleep. I liked his night nurse, Brian, and CNA, Lorrin, but I still felt like not enough was being done. As the night went on, it seemed Kev was losing color again and not feeling consistently better. By midnight he was asleep, but I was awake when someone mistakenly came in to check Kev's vitals. We had been told he'd get to sleep uninterrupted until 4am, so it was bothersome that orders weren't being checked and followed closely.
By 4am Friday, we were up for blood labs (hemoglobin and hematocrit). Kev said he was nauseous, dizzy and had a headache. His fever had spiked to 101.3 and he started bleeding again. His crit had once again dropped and was reading at 21.3. Brian contacted the on-call Dr regarding Kev's symptoms, and to get permission to administer Tylenol for fever. They also ordered a chest x-ray to rule out pneumonia. However, even though things went downhill so early, nothing seemed able to happen until business hours. HOSPITALS SHOULDN'T HAVE BUSINESS HOURS. If someone starts losing blood at 5am, then do something about it at FIVE FREAKIN AM.
It was 730 by the time the x-rays were performed. We'd still seen no sign of a Dr. Kev started complaining of chest pain around 830, but an EKG order was cancelled until the x-ray results were produced. The nurses had a shift change in the midst of all the drama and we were blessed with Julie, who seemed genuinely concerned about Kev's well-being. Throughout this traumatic day, she continued to be very respectful and responsive to me.
During all of this, I had called Seth to ask him to come back to the hospital. I was trying to keep it together in Kev's room, so I went to the lobby to cry. I also waited for Sophia to bring Lincoln to me to nurse around 6am. It may seem ridiculous that I insisted on nursing him instead of forcing him to wean in all this... but when I had the chance to sit quietly with my baby and nurse him, it gave me some comfort and helped me feel in control of something. I know it also helped him relax and feel better about me being away from him so often. Sophia and Jose did a wonderful job keeping him alive in my absence, though! I also made arrangements for Aspen to play at Maren's in Sandy, from which point her Aunt Anna would take her for the weekend
By 945, we were informed Kev would have another CT, as well as an angiogram. It would hopefully show some active bleeding and allow the GIs to pinpoint the source so they could go in a cauterize. They'd taken numerous blood samples for cultures, but we wouldn't get any results for 24 hours, then 48 and so forth. Seth and I were hopeful the scans would finally provide the GIs some answers.
Unfortunately, since Kev had already lost the accumulated blood in his GI, there was no active bleed seen in the CT. They cancelled the angiogram and we waited to find out what would be next.
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