you go from worrying he will die to wanting to kill him in less than twenty minutes.
So I’ve been home for approximately eight hours and this is what dawned on me. That last 24 hours in the hospital was more stressful than the first. Not because the surgery didn’t go well, but precisely because it did. John was recovering at a remarkable clip, all the nurses and the NP smiled and said he was going home early and that’s when John started freaking out. Of course, he was pissed (and is probably STILL pissed and probably not speaking to us) because we characterized it that way.
However, instead of being the happy and grateful teddy bear that wanted to hold our hands (like he did in the ICU) he started worrying about little details, getting critical of the staff and procedures, generally misunderstanding that he was supposed to ask to get his pain meds instead of having them delivered like clockwork through the iv.
The biggest indication that his pain (and inflammation) was not being adequately treated was that he stopped walking the corridors which he had been doing with gusto until he had a moment of extreme pain while walking with Robin around 2:00 p.m. on Sunday in-between the transition from Toridol to Percoset (which gave him a migraine) to Tylenol.
He couldn’t have an anti-inflammatory because his platelets were too low, and they had to wait for a physician to review his blood work the next morning.
This panic and pain brought on a huge tidal wave of fear and anxiety where we witnessed John tell long tales of what it’s like when you back goes out and how “you are a blob of jelly on the ground and you can’t even crawl into the bed and I’ve had heart surgery and I’ve had lower back pain and lower back pain is worse” and how much he hates and detests all the “idiots who suggest I stretch” because they really just don’t get how laid out you get and nothing works, not even physical therapy. He talked and bemoaned his fear that he would go home, throw his back out, not be able to walk, develop pnuemonia (from the inability to move) and end up back in the ICU. He emphasized that Monday seemed too soon to be discharged, and examined his scar and the swelling in his ribs over and over.
All of which, of course, sounded horrible and made us really panic too. How WOULD John be able to get out of bed at home? Here at the hospital he had a mechanical assist–a wonderful bed that lifted his back and lowered him to the ground. Here he was Sunday at 9:00 p.m., and he wouldn’t walk the halls…how in the world could he go home Monday at 4:00?
Around midnight, I walked out and talked to the nurse. I asked for a physical therapy consult to be sure he could get out of bed without throwing out his back. I reminded her that he has some calcification on his vertebra and a history of back trouble. She said it was not standard for a guy in as good as shape as he, but that she would put in a request. I also mentioned how nervous he seemed to be about being discharged in the morning and she said, gee, we thought that would cheer him up. I said, no, it seemed to unleash more fear in him.
That night, at his request, I woke him every four hours so he could request his meds.
In the morning, during the shift change between 7:00 and 8:00 a.m., we talked and reviewed the meds with the nurse. Mom had arrived for her morning shift.
John was very calm in describing his pain to the two nurses, Lin and Bethany. He said it felt like he had a gigantic water sack under his arm (where he had the thoracotemy). He was concerned that he needed an anti-inflammatory and again, they said that when the platelet test came back, that decision would be made.
I added that he wouldn’t walk because he was afraid he couldn’t turn his head and he was worried he would fall down and throw his back out. I mentioned that he was uncertain about being discharged so soon.
I again emphasized that he’s not walking (thinking that this was vital information–at the lecture on the first day they mentioned that on Sunday patients would really start to feel like they had been hit by a semi and would stop wanting to walk.) The nurse had the insight that if he’s not walking it means his pain is not being managed. That even with inflammation, if he had enough meds, he could walk.
After the nurses left, John unleashed: How dare we say he was anxious! He wasn’t anxious or afraid, he was making a calculated & reasonable decision not to walk based on the fact that he might throw his back out! He insisted that me and mom were pestering him to walk and “be a brave little soldier” and “get out there and walk” despite the very real danger that he might have so much pain that he would fall down and throw his back out and five guys would have to pick him up off the floor and ….you get the picture.
Voices were raised. I do NOT like to be accused of motives and actions that inaccurately represent my actual state of mind. Hey, John, I said, when you spoke with the nurses, you were calm and you acted like falling down wasn’t an issue…just the water bag feeling. You didn’t go into the whole “I’ll be a blob of jelly” story line with them. We are just trying to let them know what you told us.
His response: you guys are making me seem like a nut job: An anxious and afraid person who is being un-compliant with his own recovery. And again, he mentions that we want him to be “a brave little soldier” and walk through the pain despite the very real threat of throwing his back out. He complained that he was woken up all night and just needed a good night’s sleep. As if I had been bugging him to take meds, instead of doing what he asked me to do.
I reminded him that just a few hours ago he was talking about how very good he is at reading facial expressions and deciphering what people really mean. I tell him that right now, his tone of voice is very offensive and I do not like being accused of asking him to “tough it out” when I all we were doing was trying to underscore everything he said to us to the nursing staff.
I pointed out that he used a very different tone when talking to the staff (calm) than when he spoke to us (edgy) and why in the world is that okay? Doesn’t he understand that when he unleashes his stress and frustration on us that it makes us want to do something to ACT on HIS BEHALF to ensure his SAFETY here and at home?
He told me that’s what family is for, that how you talk to family is not necessarily how you talk to staff. That we are here to hear his fear and frustration but that we are supposed to let him deal with this pain and suffering without butting in and misrepresenting him.
Oh really? Yes, apparently as he put it, he works for the State Department and his job is to be aware of and plan for all contingencies. He is SUPPOSED to think everything, be thorough and be prepared.
Mom and I shook our heads. John, we said, you are heavily medicated and besides that you have a lot of stress hormones flowing through your endrocrine system. How in the world are you supposed to be able to plan for everything on your own, especially when everyone is different and everyone reacts differently to surgery? A 70 year old with a history of heart disease is going to be a lot different that a 45 year old with a bad valve and a history of migraines and back pain. Our job is to remind the staff that although you look good on the surface, you are concerned that you will have other issues when you get home.
He was HIGHLY insulted. He then blamed the staff for not adequately preparing him. For example, he was alternating between freezing cold and sweating hot. He said they should have told him he would need a heating pad at home. He also had to have Robin buy a thermometer as well, another small detail they left out. We thought this was an excellent example of how it goes in real life. Everyone tries to plan ahead, but there’s no way everyone remembers everything every time. That’s why you need back up.
That’s why we suggested he let Lily sleep with us at the hotel on the night he came home from the hospital…just in case something came up. In the numerous times I’ve brought my family members home, I’ve always had to go to Walgreen’s in the middle of the night because there is always something else–popsicles, gauze, a humidifier–something. (Both John and Robin declined separately, but Robin made sense…Lily had never been away from them and having her away would just be one more stress instead of a relief.)
But at this point he was petulant and angry and I was fed up. I left. Okay, Mr. State Department: You deal. I had been sleeping on a bench under a sheet for five days. I needed some sleep and some clarity. I told him I was leaving but left with this parting thought: please have the physical therapist lower the bed and make sure you are getting out of bed correctly so you don’t throw your back out. He glowered at me. I went downstairs to get some coffee and food.
Okay, at this point I know I’m supposed to be the one being “big” and separating his actions from his words. To be non-reactive and to keep the big picture in mind. But I also knew he was sick of looking at me and that I needed to go before I really lost it.
Mom was there when the physical therapist came in. He took one look at John and said he looked great and that he never worked with patients who looked as good as John. He verbally asked if John knew how to get out of bed, John apparently said yes, and he left after reviewing some exercises. No actual flattening of the bed, no actual getting out of it.
When I heard I smacked my palm to my forehead. Why not go through the motions? Was all that talk of jelly just b-s?
Later when I returned, Mom pointed at the physical therapist and I once again explained to him my concern…could he please go in and just double check…actually watch John get out of bed and make sure his back doesn’t go out? He did, John was fine. I felt relieved and didn’t care if John was annoyed. When we peeked in he was sleeping.
We left the hospital knowing that John wanted to sleep and was pretty much fed up with our “unreasonable” interventions. Robin was due to arrive for the discharge instructions after going to Target to buy supplies and sanitizing the house. We took a shuttle to a stop near Murray Hill and split a giant lasagna and caesar salad in Little Italy.
Robin called to say they wanted to say goodbye but to warn us that John was a furious bear–He Who Cannot Be Pacified–and I told her, no worries, if the shuttle arrived too late they should just go…don’t wait and risk aggravating John some more. We returned just as they had driven away so Robin circled back. We kissed them goodbye and watched them drive away. Lily looked at me with a mixture of hopeful happiness–it’s nice to see you– and betrayal–how can you leave us? Sigh.
John was either unrepentant or sheepish, I’m not sure which. Probably clinging to his anger and fear, but after protesting so loudly that he was neither angry or fearful he was kind of stuck having to live with the consequences of not allowing us to protest on his behalf that he should perhaps stay a day longer.
Oh well. I can forgive anything–like Erik said, it makes sense that when someone reaches in a pokes around inside your heart that you are deeply affected and your body is stressed. All I can say is that if he comes at me with this same line of reasoning in a year–after all is said and done and he’s healed and off pain meds–I will be the She Who Will Not be Calmed. Honestly. I do not think we were doing anything wrong and were simply trying to ensure his concerns were being addressed.
Long ago, when Grandma Alberini heard that John had a heart murmur she mentioned that she heard that people with heart murmurs tend to be stressed out people. That the daily struggle to oxygenate the blood causes them to become anxious. I’m hoping that now that his valve is fixed, he can relax his temperament.