Sunday, January 18, 2009

Show Me Normal

Sometime late tonight, the internationally renowned orthopedic surgeon, Dr. Charles Beck will return to Salt Lake from Austria, where he has been marketing his amazing medical innovation: synthetic tissue that can be used to replace a damaged meniscus in the knee. He may think this was more important than sticking around to check on the patients he operated on right before he left. I disagree.

It’s been a long time since I have written on my blog and it’s very likely that my readers have given me up for lost. In a way, that’s a relief. I had always tried to reflect on my life in a humorous way, and that well is totally dried up at the moment. And this is a long story – not exactly reader-friendly. But I need to write it all and not worry about style. I’ll spit it out, go to bed and maybe be able to sleep.

So here’s the deal. Si needed to have an anterior cruciate ligament (ACL) reconstruction because of his soccer accident in September. When he tore the ligament, he also released a blood clot, so we’ve been waiting to have the surgery until the clot was under control. 1/9/09 was the magic day. Dr. Beck (who really does have a great reputation) did the surgery, pulling a bit of Si’s own hamstring tendon to fashion a new ACL. It was textbook. No problems at all. A few hours later, a nurse was helping me load him into the car to recover at home. Ice, elevation, a big bandage under a pressure sock that we were told to leave alone, a lot of Percoset. They warned me that he would be pretty uncomfortable for a couple of days, then would start feeling better.

By the following afternoon, he was in agony, complaining of terrible pressure. The Percoset didn’t touch the pain. I phoned the on-call doctor about it. He told me to loosen the dressings. WTF? It was this enormous ball of bandages with a super-tight stocking holding it in place. Loosen it? How loose is loose? What if I let germs get in there? I called my dad, the ancient doctor, who told me to cut the damn pressure sock off. I did. Didn’t help in the slightest. Si reached to touch his thigh and felt a big tender swelling. Scared the s*** out of him – he thought it was a sign of a blood clot. I called the doctor on call once more. He wasn’t happy to hear from me and let me know that (“This is Dr. Henderson again.”). I explained our concern and he said, well, you should get him to an emergency room.

I wish now (like, at least twice a minute), that I had chosen the ER at the hospital where Si had the surgery. It’s really far away, though, and he was in a lot of pain. I chose the nearest ER to our house. They dismissed a blood clot out of hand, after I told them that I was currently giving Si two different types of blood thinners. They took the dressing off and looked at it, said it looked OK, wrapped him up again. Si started shouting, screaming. They gave him morphine. It didn’t help. They gave him more morphine. He hyperventilated. They gave him valium. He calmed down. The nurses there talked to me about pain management. Reminded me not to skip his meds (As if! We would both stare at the clock, WAITING for it to be time for the next meds). Told me that Si might simply have a low tolerance for pain and a high tolerance to Percoset. So we went home in a tough-it-out frame of mind.

We waited for the pain to abate, but it didn’t. We talked to friends who had had the surgery. They assured us that, yeah, it was really painful. We waited some more. Monday, I called the surgical practice to tell them that I was not going to replace the pressure stocking, because Si's leg was too painful and swollen. They just said OK.

He reached the point at which he couldn’t get up to pee. Even sitting in the edge of the bed and peeing into a bucket was agonizing. Monday night was when it got really bad. At about midnight, he lost it with me: told me that I resented having to take care of him. He could SEE IT! Well, never mind! HE could take care if HIMSELF! He got so worked up over it that he was shaking all over. I had to plead with him to let me give him his blood-thinner shot. He told me he didn’t want me around. Sent me out to sleep in the living room. I could hear him struggling in the other room so I couldn’t sleep; at 4:00 AM I went in to give him his pain-killers, and found him hysterical, gasping. He asked me if I were the ambassador (?). In the morning, I begged him to come to the ER, but he wouldn’t – told me the doctors just think he’s a baby and can’t handle pain. This went on and on. Our bedroom became sort of prison cell where he would lie and scream and shout for hours; he would beg me to change his position – nothing that I tried worked. The place was an explosion of pillows, towels, discarded ice packs, tangled sheets. Tuesday evening, I tried the doctor on call again. I was in despair. I just cried on the phone and said that his pain was unrelenting and that I didn’t know what to do. The doctor very helpfully suggested that it was because we were using a generic version of Percoset. Sometimes the generics don’t work, he told me. I had a prescription for Lortab so I went and filled that. I told the pharmacist about the generic Percoset and she told me that was absolute nonsense. I hurried home and gave Si the new pain meds, wildly hopeful that this was the crux of the problem. It didn’t help in the slightest. Si started crying. He just sobbed. The kids started melting down. We were all exhausted and hadn’t slept in days. The kids had been eking out a living on peanut butter toast since the last meal I cooked on Sunday night. Tuesday night, he screamed all night. I mean he shrieked at the tops of his lungs. I never lay down for more than two minutes. I was never so glad to see a sunrise.

Wednesday morning he had an appointment to see his family doctor, who wanted to check the level of thinners in his blood. Getting him to the appointment was horrific. Every tiny bump in the road made him scream. When we got to the doctor, I said that I was fed up. I told him that he was to call the ER at the hospital where Si had had the surgery and tell them to expect us. And that they would be admitting him. I told the doctor to call the surgical practice and tell them to have a godd**n surgeon there waiting for us. Of course, now that it was a doctor calling in, rather than a distraught wife, they actually paid attention.

Long, agonizing drive. More morphine, and still more. The surgeon on duty was Dr. Marshall (Dr. Beck’s partner) and when he opened the bandages and looked at Si’s knee, he froze. “Well. This looks like…” He couldn’t finish, so I said, “A mess.” “Yes. A mess.”

This was the first I had heard of Compartment Syndrome. Everyone had been worried about clots and focused on eliminating that as the source of the problem; but no one mentioned that opposite side of that coin- that his blood might be too thin and cause a hemorrhage. That was what had happened. He started bleeding into the knee cavity where the surgery had taken place. Like a blood blister under a fingernail, the pressure grew and grew. The blood and contaminated fluid, having no where to go, gradually started forcing their way up to the surface of the skin, where they formed blisters on the ruined tissues.

They operated on him that night, late in the evening. While they got ready, I went home to arrange for care for the kids, and I felt happy. Elated that the cause of the problem had been found; relieved that he was not in pain. I tidied up the house, especially our room; I stripped our bed and chucked the sheets. I never want to look at them ever again. I cooked a proper meal for the kids; I bathed them; supervised homework; read stories; took a shower and brushed my teeth for the first time in days.

They finished the surgery at about midnight and Dr. Marshall came into the deserted waiting room to talk to me. This surgery is called a “wash out”. Basically, they drain the trapped blood out and then flush out the knee cavity. FOUR CUPS of blood came out of his knee. They inserted a drain. The good news is that the original ligament graft is still intact. The bad news? The surgeon pulled a wry mouth and told me that recovery was going to be “a long road”. There‘s the increased stiffness and scar tissue because physical therapy will be delayed. The struggle to get his blood to the right level of coagulancy. Worst of all, the horribly damaged tissues all around his knee, prone to infection because they’ve been stewed in this pressurized blood bath.

He’s been in the hospital since Wednesday, then. Dr. Beck will take off his lederhosen and check on him in the morning. There’s a good chance that he will want to do the wash-out procedure again: another general anesthetic; another dose of morphine (which makes Si hallucinate); another invasive procedure on his knee. They are starting to look toward his eventual home-coming, whenever that may be: there is discussion of a home-health nurse and visiting therapist; they put a PIC line in his arm today. It’s like an IV that is meant to stay in place for months (MONTHS!). It’s a tube that runs up a major vein in his arm, through his shoulder and into his chest. That gives me the willeys.

He called me late tonight, a little depressed. He fears another surgery. He wants his life back. I tried to think of something comforting to say. I told him that he would feel better when he could come home in a few days and start working on his recovery. I reminded him of all the little things he would get immediate pleasure from: eating supper together; sleeping in his own bed; getting outside. But I’m dealing with my own s***, too. I’m scared about the upset to our delicately balanced two-career schedule (eventually, we both have jobs that require our attention); I’m terrified that his knee will never recover; I feel like it’s my fault and can see, looking back, all the ways that I might have prevented this from happening; I’m scared that he’ll get home and there will be another complication. I am resisting the idea that we may have to find a new normal.

11 comments:

Alice Kildaire said...

Bless your heart! I had been worried...it's unlike you to go do long without posting. Damn doctors! The whole lot of 'em! Poor Si! And poor YOU!! It sounds as though you did everything humanly possible, this is NOT your fault. Seems as though you guys are victims of a healthcare system that rushes people through like cattle. I wish Si a speedy recovery and a quick return to normalcy for you all!

Weber said...

Kate, I am so sorry to hear all this. PLEASE let us know if we can do anything to help.
Shirley

Susan in Lille said...

Oh Kate, I wish I lived near you so I could help you out. If you have any doubts that you did something wrong just reread your post. You did all you could and made the best decisions with the information you had.
I am sure Si will be a regular in physical therapy for a while but the good news is the body is an amazing thing and with time, meds and therapy it won't always be as hard as it is right now. Another good thing is the timing. By the time Si can ride a bike it will be warmer! Road biking helped my knee immensely after my surgery. It's also very meditative and can help heal the mind/soul along with the leg.
Remember that you need a break too. Taking care of someone and postponing/changing your life to care for a loved one is not an easy thing, make sure to take care of Kate too.
Hugs from France...

Lulubelle B said...

Oh Kate, I'm so sorry. The best advice I can give you is "one day at a time".

I had a PIC line for a month. Once it's in, you don't feel it at all. For me, it was much better than daily IVs and injections.

My thoughts are with you and Si and the kids. Hang in there!

The World According To Me said...

I was distressed purely reading this, so I can't imagine how it's been for Si and yourself. I'm so sorry you've been through such a crap, traumatic time. Thank goodness they finally got to the bottom of it, and now it's the road of recovery.
As Lulubelle said, one day at a time. Sending you positive and strong vibes. Take care and let us know how you're doing.
PS You must never blame yourself, you placed your trust in people who should know what they are doing!

super hero said...

i am really very sorry to hear all about this. i hope you all get well pretty soon.

Anonymous said...

I am sincerely sorry you have gone through this difficult time. My best wishes to your family.

I hope that you will give us an update when you have a moment. We are all thinking of you.

Amy

suesun said...

For the first time, beloved Kate, you have made me cry. I was just holding my breath reading your post. Thanks for sharing all the details. You WILL get through this.

Advice- say YES when your friends ask to help. Let them cook and clean and accept it graciously. It will help THEM as much as you.

Lulubelle B said...

Hi Kate! Just checking in. Hope Si's feeling better and you're doing OK, too.

:^D

Amrita said...

Oh Kate I am checking your blog after a while and I 'm so sorry to read what Si and you have been through

Maria said...

Sad, but true. We have to be advocates. And it is hard to do that when so called "experts" are treating you as if you are an alarmist.

I'm glad Simon has you.