WHAT THE FAMILY WENT THROUGH

We got called for the liver transplant late in the night.   I ended up driving much too fast to get to the hospital.  They took us to a room where Jerry had to get prepped for the surgery.  They then took us to the waiting room outside of surgery and my daughter and I stood next to Jerry.  We made conversation trying to past the time.  We saw our surgeon who told us they were going to go ahead with the transplant.  Then began the forever wait.  Sitting in the waiting room and waiting for the call from the surgical nurse to tell us how things were progressing.  Being thrilled to see the surgeon walk in to tell us how well things went.  Finally being able to relax to see Jerry in Surgical ICU for a few minutes and seeing for our own eyes he is okay. LESSON LEARNED: You can go for a couple of days with no sleep and very little food and still function.

I remember between seeing Jerry fully awake after surgery and before they took him back down to ICU with the seizures from the meningitis feeling things were not 100% right.  We did bring it up to the doctors watching Jerry, but it was dismissed as recovering from major surgery and the liver not being quite awake.  LESSONED LEARNED:  Doctors are people too.  If you are a patient with a bad liver, they see you as a LIVER patient.  It is extremely difficult for them to see you as a whole person because they have that emphasis on that one part of your body.

I got called by our daughter when Jerry started with the non-convulsive seizures.  I was totally unprepared for this.  I had been talking every day to Jerry and we were planning on him going home that weekend.  I got there in time for the meningitis to start short circuiting his brain.  He was having problems talking and his body was not reacting to stimuli.  We were trying to talk to each other when his brain could take it no more.  His last word to me was Why?  LESSON LEARNED:  Sometimes things will haunt you even years later.

The day they figured out Jerry had meningitis, a neurology fellow came in and examined him; asked us questions and left.  An Infectious Disease fellow was in the room going over the results of tests they had run.  Near the end of the day a tech came in and threw us out of the room.   My daughter and I were upset.  I was upset because they didn’t let me say good night and my daughter was upset because neither doctor had told us anything all day.  It ended up me making a call to a phone number I found in the hallway and complaining about the situation and sneaking my way back into the ICU pod and confronting the doctor before we found out why we had been throw out and what the Infectious Disease doctor was there for.  LESSON LEARNED: When going into a new situation, find out who you should speak to if you are not receiving the care or information you think you should.

This began the hardest days. Talking to Jerry but not getting a response but still talking because they say that people in comas can hear.  Never saying the word coma because I was too afraid.  Answering family and friends and trying to tell them hopeful things without telling lies and having them respond in ways that just made you feel worse.  Phone calls and unending papers to give permission for the unending lumbar punctures and MRIs and CTs.  Being told the possible side effects so often that when they called you respond by telling them…Yes, I give permission and the possible side effects of the procedure are…

I don’t want it to seem that it was all bad.  There were bright spots like when the surgical fellow saw me at the entrance to the hospital and stopped on his own time to tell me  that he always knew when I had been with Jerry because Jerry’s vitals would be stronger.  The hospital social worker who met me in the hospital to sit with me and tell me I was doing the best I could when I really needed to hear that from someone other than family.  Having a nurse who was just wonderful to Jerry and who took the time to tell me that little something that gave me hope or showed that she hadn’t forgotten Jerry was a person and not a piece of furniture.  LESSON LEARNED: Concentrate on the fact that you moved forward even if it was just a baby step and don’t forget to email or write the hospital or company when you get that special person.

After the meningitis was dead, the swelling in his brain caused problems and they wanted to operate to improve the drainage of fluid from his brain.  That is when I found out that brain surgeons can have problems talking to non-medical people.  Jerry came out of the coma with the improved brain drainage but they were worried about taking him off the ventilator.  I was more worried how much damage they were causing removing and putting back the ventilator each day.  I did some research and suggest to the ICU doctor that they put him on a trach to help wean him off.  Totally surprising the doctor because he had been coming to me to suggest the same thing. LESSON LEARNED: If you can research, it will make difficult decisions less scary.  Internet, nurses, people who have gone through this before are all good sources.

When Jerry was released from ICU, his brain was still healing.  He would call me and tell me that the nurses had stolen him and he didn’t know where he was.  I would talk to him trying to keep him calm while calling the nursing station to ask his nurse to go to his room and reorient him.   Jerry would be describing where he was (which was totally different than the room I knew him to be in) and I would hear the nurse come in and ask Jerry if he knew where he was.  He would respond that he was in the hospital and just that was enough to bring him out his fright.  It got so bad that I had to convince him that I had hired two shifts of two bodyguards to watch over him day and night.  LESSON LEARNED: When the patient is not in their right mind, you do what you have to so that they feel safe.