Saturday, December 09, 2006

Guillain-Barré

My sister arrived last night to give me a break from care-giving. The circumstances of that job have changed drastically within the last week. For years, my mother has been the primary care-giver for my father as he has struggled with Chronic Obstructive Pulmonary Disease (COPD), an increasingly debilitating condition made more difficult by the onset of heart failure earlier this year. When I started this blog, my father was just released from the hospital after having fluid drained from his lungs, and I planned to spend days at my parents' house helping my mother with various things.

That quickly changed the next day, when my mom reported that she had begun having severe back pains and tingling in her feet and hands. Her first long visit to the emergency room promptly ensued but they found no reason to admit her and sent her home with a prescription for Vicodin. I started spending nights there. Four days later, I awoke to find my mother seated in my dad's walker, exhausted and barely coherent. She needed to go to the bathroom in the middle of the night, but didn't have the strength to get there or back to bed. As she complained of chest pains and diffculty breathing, I called 9-1-1 and they escorted her to the emergency room. Once again, the regular tests came back negative, and, after 14 hours, despite the fact that my normally healthy mother could basically not move her legs, she was sent home to recover.

Five days later, her condition was obviously deteriorating, she couldn't eat, and it had become impossible to lift her because she was too weak to help. At the same time, my father's condition was taking a turn for the worse as he was unable to sleep with all the racket we were making every few minutes 24 hours a day. So, my mom returned to the emergency room for a third visit. This time, my brother would not allow them to sluff things off and refused to depart with the patient. After 14 hours, they finally secured a room in the emergency ward, a wonderful hospital medicine specialist who realized that something serious really was happening, and early the next morning, a real bed in the hospital.

Because the pain was obviously getting worse, changes were made in medications 3 times before one was found that worked well enough to allow my mom to remain still long enough to have an MRI 5 days later, an earlier CAT Scan and ultrasound having revealed nothing unsual. When that came back showing nothing unusual, a nurse told my mom that they would be discharging her. Fortunately, the doctor, alarmed by her growing weakness and continued inability to move her legs, disagreed and called in a neurologist. The neurologist wasted no time, changed his schedule in order to perform a lumbar puncture not long after first seeing my mother, and reported the results a couple of hours later: my mother has Guillain-Barré Syndrome.

12 comments:

reader_iam said...

Oh, my, Internet Ronin. You have been through the ringer. Thank goodness one of the medical professionals got a clue. That Wiki link was a little alarming--did they diagnose your mom in time?

And how are you holding up?

Annie said...

My young niece had this. She was so weak she was nearly paralyzed. She recovered completely, but it took a couple of months and she's in her 20s.

It sounds terrifying and exhausting.

(amba. if I try to switch names the commenting may not work.)

Internet Ronin said...

It is alarming. We don't know anything for sure, but they say that the first three weeks are critical and we believe that Friday was the end of week two. So far, the paralysis extends only as far as her upper legs and her right elbow, although she can still move her fingers.

They began the plasma replacement treatment immediately that day in hopes that it would make a difference. A team of doctors is now working on her case, and various things are already being done to keep her muscles in some sort of shape. The swift reaction once they realized what was going on is heartening.

I'm doing O.K., thanks for asking. I'm late for my return to reality, in fact - all the kids are meeting with my dad to plan various things, such as giving me breaks from taking care of him (I'm the only one not working and have the most time), visits to my mom in the hospital (she'll be there for weeks), etc.

As I have my own health problems and am not nearly as strong as amba, a genuinely heroic role model if ever there was one, I am already worn out - slept through almost my entire day off yesterday. Fortunately, I believe that we can put together a schedule which will prevent that happening again.

SippicanCottage said...

Your friend in the swamp hopes your backpack is only half full tomorrow, as it appears very full today.

Sippican

tjl said...

All this at once is much to bear. Maybe distraction is helpful, even in the form provided by DTL.

Internet Ronin said...

Thank you all for visiting, and the kind words.

Sip: Thanks for the thought, as it looks like your wish was granted. (Would that it was really so easy ;) My sister is able to stay a few extra days (we hope).

TJL: Yes, distraction does help. And snatching a moment here or there to read blogs, etc. can be quite refreshing, I have learned. (I have to admit was quite frustrating that I lost the ability to comment elsewhere when I upgraded to Blogger Beta at the same time all this began happening, but they finally fixed that, so now I can vent my frustrations on DTL instead of the Blogger support team ;)

David said...

I hope that, with your great help and kindness, she recovers, and that you continue to find the strength you so clearly have possessed up to now.

Internet Ronin said...

Thank you very much for the encouragement, david! Yours was the last thing I read before retiring last night and I have to say that it made quite a difference in how I felt about the day.

Theo Boehm said...

Just came by to say a few words of encouragement, and wish you and your family the best.

This sounds like a terrible situation, but it also sounds like your parents are fortunate to have so responsible and caring a son during this dire time.

Having done some of this for my own mother, who was laid low by Parkinson's and arthritis, I know how exhausting it can be. Please take care of yourself. I'm sure everyone who knows you from Althouse is pulling for you as much as I am.

Internet Ronin said...

Thanks for the encouragement and wishes, Theo! I'm pretty sure that I am not so much a "responsible and caring" son as a seriously under-employed one wracked with Catholic guilt, but I do appreciate the kind words.

Fortunately, my brother and sister are similarly constituted. My sister, who flew in "for the weekend," has ended up staying the entire week, alternating between staying overnight with my mom in the hospital and giving me breaks at home.

My brother and sister-in-law are helping out when and where they can as well, when not working or taking care of the needs of their own family. All of it makes it much easier. And that is why I admire Amba's courage and stength - I'm not sure I could manage it on my own.

Callimachus said...

My ex-wife had this when we were first married. It typically takes a while for the doctors to diagnose it correctly because it's pretty obscure and the early symptoms can suggest other things. She got to the point where she could barely walk, but she also made a full recovery over a couple of months and has had no recurring symptoms that I'm aware of.

Sleep is good for the caregiver. Almost more than food, sleep is what keeps you alive day to day. Don't be ashamed of taking it.

Internet Ronin said...

Cal: Thanks for the thought. I'm hoping to post something later, but the good news is that my mother's paralysis ultimately stopped ascending at her stomach and one elbow and has begun slowly receding, albeit quite painfully.