Beggars can't be choosers, I guess

I was able to get BR an appointment with a "Urology Team" today. I was really relieved that we wouldn't have to be making another visit to the ER. Unfortunately, the urologist wanted to treat BR as a new patient, not as a patient with an urgent issue.

"I can't treat you until I get the results of a urodynamics test"

"What does that do?"

"It measures the strength of your pelvic floor."

"We already know his pelvic floor muscles are all messed up. That's why he has the suprapubic catheter."

"Think of it as a cardiologist ordering an EKG."

"OK. Where do we go to get one."

"You'll have to come back in two weeks."

"But it hurts and leaks now!"

We finally got her to sit and listen to what lead up to the current situation. I explained about the bad tube change, and how none of the changes since have done any good. I also explained my theory that maybe the nurse was over-inflating the catheter balloon, and that was causing the bladder to spasm and release through the urethra, thinking it was full.

"How much is she putting in?"

"I think she's shooting for 30cc."

"That's way too much. 10cc should be enough. Let's check that."

She then pulls 25cc of water from the balloon, and puts 10cc back.

We scheduled the test and said our goodbyes, not really happy with the experience.

Fortunately, BR's spasms have reduced in frequency and severity. We'll see how tomorrow goes.

Waiting for the next test

Trying to reign in the worry

BR had yet another catheter tube change yesterday, a week earlier than usual. That makes three tubes in five weeks, and none have resolved the bladder cramping and pain, the leaking, and the sediment in his urine. At least it's not blood anymore.

Sediment. What a funny word for "the bacteria are renovating your bladder -- please pardon our dust."

We got a referral to a urologist today. Of course, we got it at 5:15pm, and they all closed at 5. I'm watching him like a hawk for any sign of fever. Without blood, the chances of sepsis are slim, so a fever would be more of a sign that the infection is spreading up towards the kidneys. And kidney damage is something we will definitely want to head off with an ER visit.

Pain killers. Tranquilizers. Adult undergarments. I want them to be enough to keep him comfortable until the urologist can see him. But I can tell they are not. I need a distraction.

Once Jordan and I get BR resting in bed this evening, we will be going to see the new Harry Potter movie. A couple hours at Hogwarts to temporarily displace the worry.

Picking the right tools for the job

You probably have noticed that BR doesn't do a whole lot of posting here. It's not for a lack of desire. He just hasn't been all that comfortable using the computer since going into the wheelchair. Laptop. Wireless keyboard and mouse. Display on big screen TV. Nothing made the task a convenient one.

Lately, he's taken to exploring and using his iPhone, and text messaging in particular. That got me to thinking -- maybe texting posts through Twitter would be a better way for him to keep everyone in the loop. You know, straight from the horse's mouth.

So we set up a Twitter account, and he's starting to send out tweets. You'll find his last five tweets over there on the left.

We're Uncles!

Our next door neighbors had their first child on Friday -- a little boy they've named Anthony. BR and I spent the day customizing some onesies, then paid them a visit at the hospital. Cynthia was in labor for 16 hours before the doctors called for a C-section. She is in a bit of pain still, but both she and the baby are doing fine. Looks like she and BR will be Percocet Pals for a few days.



They don't allow visitors to take pictures in the nursery, so I'll just have to put on my paparazzi hat and wait for little Bobanthony to come home later today.

Impulse purchase of the day

"I saw it from the checkout aisle at The Container Store, and just had to have it!"

I'm not dead yet

Saint Peter Number 2

BR woke up with a lot of blood in his urine this morning. Oh, no. Here we go again...

December 13, 2007: BR had just taken possession of his brand new iBOT. I had gone to work in Palo Alto, and after stopping to pick up some condom catheters, made my way home to the Castro. There I found BR in his iBOT in the living room, in obvious pain.

He related a story of an in-dwelling catheter insertion gone wrong. A home nurse had come for a routine visit, as he had just been released from the hospital the day before after a severe bladder infection. At that time, BR's biggest complaint was incontinence. He had been trained to use an intermittent catheter every 4 hours, yet still he leaked. Being the charmer that he is, he convinced the nurse to give him an in-dwelling catheter.

Now normally the catheter is inserted through the penis and into the bladder. Then a balloon is inflated in the bladder to keep the catheter in place. Well, for whatever reason, this nurse did not fully insert the catheter before inflating the balloon. [Insert expletive here]

BR bled from his penis through the evening and into the night. His GP told him that if the bleeding didn't stop by morning, or if he started to run a high fever, he should call 911. At midnight, he was still bleeding, and his fever hit 104. A short ambulance ride later, we were in the ER, and BR was diagnosed with sepsis. He spent five days in the CCU and another three in acute care before being released a much weaker man.

Fast forward to this past Wednesday. The home nurse had come to change BR's suprapubic catheter, as she does every three weeks. This time it didn't go so well. BR experienced painful bladder spasms every ten minutes the entire day. We called the nurse back out the next morning, she replace the catheter with another, and everything seemed fine. That is until I saw the blood in the tube and bag. [Insert expletive here]

Untreated sepsis is a quick death. BR and I discussed whether or not to call 911. After careful thought, he decided that if he should get a high fever, he didn't want emergency care. I promised to respect his wishes, and reminded him that he could change his mind at any time if he wanted to.

God did not call him today. The blood cleared, and there is no sign of fever.

I'm exhausted.

While the cat's away, Summer 09

	Melting in the Texas heat
	With Nephew Jay before "The Toilet Affair."
	Niece Jordan. Beautiful and talented.
	Gina picks up the last shift.
	BR models his present from Toronto.

No way back. No good options left.

As he entered the waiting room, a large, friendly sign instructed him to be seated and wait for his name to be called.

"God will be with you shortly."

The neurologist has disengaged. He didn't offer any treatment courses to help manage BR's symptoms. When we brought steroids back up as an option, his response was "OK. Do you want oral or IV?" I got the distinct impression that he didn't think there was anything that would help, and he would have prescribed hemlock if we asked for it.

So I turn to you, dear readers. Do you have any experiences or advice regarding the difference between oral Prednisone, or IV Solu-medrol?

The Wheelchair Kamikaze warns of a side effect called Avascular Necrosis, which he got while being treated with IV Solu-medrol.

I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.

Lisa Emrich has a nice article on Health Central summarizing the more common side effects.

In 2005, I was in the process of being officially diagnosed. After the results of my Lumbar Puncture came back, I was called into the neurology center to begin a 5-day adventure into SolyWorld. One of the other MS patients already hooked up mentioned that it was like “PMS in a bag” - a description he and his wife had lovingly coined.

WebMD offers:

Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.

Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.

Hmm. So we may just be getting a short period of better quality of life at the risk of some pretty severe and permanent side effects. Maybe we can play a timing game. A round of steroids now to help get through the hot Texas summer months. A round in November to help get through the holidays.