Day 9 - Surgery - Part 3

Hi everyone,

We went in for out initial visit with dad at 6 p.m.  As planned he was in the neurological ICU, which is its own separate area. There is also a cardiac/pulmonary ICU in another location.  Dad had his own room and his own nurse.

The room was dark when we entered, with the exception of the ambient glow of the nurse's cart.  I assumed this was so because some patients suffer from light sensitivity after the surgery, or at least that's what I've read.  We approached the bed and dad was moaning in pain.  I could see the surgical wound.  It stretches from his left temple up the side of his head and is about five inches long and covered by a somewhat bloody bandage and waterproof tape.  It is all very tidy, right down to where they trimmed his hair.  He also has some scabs on his face from where a "halo" had been screwed into his head to keep it from moving during surgery.  He has an IV in both his hand and foot, an arterial line in his wrist, a central line in his chest and a catheter. There was a folded blanket almost on top of his face, as though he was trying to use it as you would an ice pack.  "My head!  I need something for my head!  It hurts so bad!"  He repeated it over and over and over.  It just broke my heart.  They had him on fentanyl during the surgery and he was supposed to continue it after the surgery as well, just at a much lower dosage.  They have to wake you up enough to do a neurological exam and make sure that everything that is supposed to be functioning is functioning.  Unfortunately that is more important than patient comfort.  The nurse, Katie, seemed very sweet and said she had just given him some and that he couldn't have more for an hour.  What can you do?  You just keep telling the person that you are trying to get them some painkillers even though you can't.  It's awful.  He was literally writhing in pain.  I felt so useless.

The nurses here work 12 hour shifts starting at either 7 a.m. or 7 p.m.  Katie told us that she was going to continue to try to get his pain under control but that when we came back for the 9 p.m. visit there would be a new person with him.

Mom and I went down to the cafeteria and scrounged for something to eat.  It was so close to their closing time that there wasn't much left.  We finally settled on some individual pizzas and some very unusual salads we concocted from what was left on the salad and fruit bar.  Mine was spinach, orange slices, raisins, white cheddar and plain yogurt for dressing.  It was interesting...  Honestly though, we were so tired that we didn't care much what we ate.  I returned as many calls and messages as I could and just kind of collapsed at our table.  Mom talked to David and kept saying that we were going to go see dad in a few minutes.  I was surprised that nearly three hours had gone by.  Oops!  They hadn't!  Between changing time zones, the end of daylight savings time, the insane schedule we've been keeping, and the stress - well, we're all kinds of confused.  We realized that it was only about 7:30 p.m.  So we walked to the other end of the cafeteria where there is a Starbucks/Mrs. Fields kiosk that never closes.  We bought a chocolate fudge brownie to share and decided to go back to the surgery/ICU waiting area to eat it and wait, mostly because they have free Starbucks there.  I guess the Starbucks must come from the main part of the cafeteria though because it was gone.  Boo.  So we found a seat to wait and chatted with a few other people.

We went back to dad's room at 9 p.m. and not much had changed.  Before he had been a 7 on the pain scale and now he was a 6.  He looked so miserable.  He was still writhing, still begging for anything to take away his pain.  The new nurse - I never did catch her name as she had a very thick Chinese accent, didn't give me a good vibe at all.  The only thing that made me happy was that she was giving him percocet with the fentanyl in an effort to control the pain.  When I had quizzed Katie earlier about the possibility of using two pain medicines concurrently she said that they try not to "polypharm" patients because if they do and there is a reaction it would be impossible to tell which drug caused it.  At the time I didn't push the issue because dad is allergic to, or at least sensitive to, a whole slew of prescription painkillers.  I guess I didn't realize how difficult that would make his pain management.

Mom and I mostly stood around the bed.  We seemed to take turns - one of us talking to dad, the other talking to the nurse.  We told dad about how the doctors said that they couldn't have planned for the surgery to go better, that the blood flow to the left side of his brain had increased by 10x and would only get better, etc.  He understood most of it.  I told him how many people had been in touch with me regarding his status and I know that meant a lot to him. 

We asked the nurse a lot of questions.  She seemed very knowledgeable, but a little perturbed that we would "question" her authority, even though that wasn't what we were tying to do.  We wanted to understand what they were doing to manage his pain and how those decisions were being made.  After all, the doctors had told us that his head would hurt, but that it wouldn't be the worse headache he would have.  The Stanford Moyamoya website also downplays the post-op pain.  So in our eyes, something was wrong - not necessarily with dad or the surgery - just with the pain management.  I asked who I could talk to, but due to the language barrier I'm not sure she understood what I meant.  She said that you talk to the nurse if you have concerns (because it was going so well already) and that if she thinks there is a problem she approaches the doctor.  Then she was telling me that they were having to watch his blood pressure because it was high - and talked about giving him lisinopril, which they had previously stopped.  While that would be appropriate, I felt that getting the pain under control would also help.  Then she said he was going for a scan.  But she didn't know what kind of scan.  Maybe a CT scan.  And then she started talking about them maybe using diamox for the scan.  They had done that in one of the pre-op tests.  And I kept trying to tell her that he can't have diamox unless he is premedicated with Benadryl and prednisone because he allergic to sulfa drugs and it has a similar chemical structure to sulfa.  And then she thought I was saying that diamox is a type of allergy medicine.  And then mom confused diamox with the xenon he had to inhale for another test and started talking about that.  So then the nurse thought that it was the same thing as Mucomyst and I kept trying to explain that it wasn't.  Luckily I have experience with both of those drugs.  It's never a good sign when you have a better idea of what the hell is going on than the nurse.  And I love nurses.  I do.  They have very important jobs.  But some are better than others and the fact is that if a nurse had the same training as a doctor did they would be called doctors.

Eventually the charge nurse came by to do his evening report and could probably tell from the look on my face that I was near tears from exhaustion, worry, fear, relief, excitement, frustration, anger, and probably any other adjective you could think of.  When we finally left at about 10 p.m. it seemed that things were going to be worked out.  I told dad that, as horrible as he felt, he had to try to stay semi-aware and that if anybody did or wanted to do anything that caused him concern to demand that they call me.  He grabbed my jacket and told me to get it together and go to medical school.  I told him I had tried.  He said to keep trying and reaching and not to sell myself short.  Sometimes I don't think he realizes how hard that is to do.  And then he told me to make sure I let mom talk (to the medical folks) and not to dominate conversations so much.  I'll chock that up to the pain and medicine.  He knows I have his back.

Mom and I reluctantly got in the car and went back to the hotel.  "Should we take turns getting showers?" she asked.  "It's either that or shower together," I answered.  We both laughed.  We took (separate) showers and collapsed.  I didn't even brush my teeth or take my medicine.  Honestly, I'm not sure if he had demanded a phone call be made that I would have even heard it ring.

It was a long, long, long day.

More later.

Love,
Rocketgirl