Just a little off the top, Doc.

Another random memory.

As I was brushing Maggie's hair this morning I noticed the large spot on the back of her head where the hair has broken off from the constant movement of her head against the headrest. It's been there for years. It's not a bald spot exactly, but the hair just breaks off after it gets around 1/4 inch long.  With the configuration of the new headrest (which still needs some work) there is a chance her head won't rub and maybe, just maybe, her hair will be able to grow back there. It doesn't really matter, no one can see it; but it would be nice.

Thinking about that made me remember the 50+ times Maggie had surgery to repair or replace the shunt in her head and would come out of surgery with half of her head shaved. It was hard to see, but like everything else we got used to it. It takes about 6 weeks for the hair to come back in to cover the spot fully and then it would not be noticeable.  (As a matter of fact, the spot I'm describing on the back of her head looks like she's about 7 weeks out from surgery.)

This was just a small rather inconsequential part of the drama we went though all the time. When your child is headed for brain surgery, the last thing you care about is her hair, at least the first 25 times. Then you get more practical.

In 1998, when Maggie four years old, she was scheduled to be the flower girl in her cousin Kelly's wedding. We were all heading to Montana for the wedding. Then, as now, we were never sure until the day we left if Maggie would be stable enough to make any trip or outing and my family learned to go with the flow. It would have taken a lot for us to cancel this trip, though.

About a month before the scheduled trip, Maggie's shunt failed again. She needed surgery. Sometimes these things came in clusters and she might have two or three surgeries in a couple of weeks. We crossed our fingers that it would work the first time so we could make the trip.

We were in pro-op going through all her history and allergies etc. The anesthesiologist was there as was the neurosurgery resident and the surgical nurse. When they were wrapping up their questions they asked if we had any questions. Steve and I had been through this many times and were very familiar with the procedure. He was surprised, then, when I said, "Yes, I do."

They all looked at me and I asked, "Who is in charge of shaving her head." The resident looked at me puzzled and said, "I am."  I looked right at him and said - "Do not shave any more hair that is absolutely necessary. She has to be in a wedding in a month and I don't want the pictures to be wrecked." Steve rolled his eyes and the anesthesiologist and the nurse both started to laugh. The resident looked more puzzled than ever. Very few parents give beauty instructions to a brain surgeon; but there is a possibility I am not like other people.

Maggie came out of surgery like a champ,  the procedure worked the first time and we were able to make the trip. And my fashion instructions worked too. Maggie had just about a two inch bald spot that never showed in any pictures.

Sometimes it pays to be practical. 

I'll take crazy mothers for 100, Alex

My post yesterday elicited many responses. A few people mentioned Munchausen Syndrome – or more specifically Munchausen syndrome by proxyThis is a rare but serious mental disorder where the parent – usually a mom – is deliberately MAKING their child sick to garner attention from the doctors. What I referred to yesterday stopped at exaggeration. I am not aware of anyone who has actually hurt their child.

There is nothing funny about Munchausen by proxy, but the term reminded me of a story. 


Really?! How very unusual.

There was a particularly bad period several years ago. Maggie must have had 10 shunt surgeries within three months. Maggie has hydrocephalus, a buildup of fluid on the brain. There is a shunt – or a tube – in her head to take the fluid off the brain and drain it to other parts of the body. Sometimes the shunt gets clogged, or breaks or gets infected. The only repair is surgical. When it is infected, the treatment involves two surgeries, 10 days apart, one to externalize the shunt and one to replace it, once the infection clears. During the 10 days, Maggie is in the intensive care unit with the shunt coming out of her head draining the fluid. Sometimes these things happened in bunches, but this period was horrific. She had repeated broken or clogged shunts, and at least three infections. She would come home for a day or so and then show signs of infection again and back into the hospital, we would go. 

If you think you can imagine the worry and fatigue we were under you are wrong. Triple whatever you are thinking and you are about halfway there. It was bad. You cannot concentrate on anything. You cannot read a book, you cannot finish an article in the newspaper, you sleep in two-hour spurts and you get more than a little rummy. I found things like People magazine to be enthralling. A one-page article about some celebrity was about the limit of my comprehension. 

Maggie was in surgery (again) and I was reading an article in People about a woman in Florida who had Munchausen by Proxy. She had been harming her child using the gastrostomy tube and catheters to put nasty things into her child’s body. I thought to myself, wow! Maggie has both of those things. Then I read that those with Munchausen by Proxy tend to be knowledgeable about medicine, which is how they fool the doctors. I thought, wow, I am very knowledgeable about Maggie’s medical stuff. 

Then I paused. Could they possibly think I was DOING this to her? Never mind that she was not having any problems with her intestines, bladder, or anything else that I could actually access. The distraction provide by People magazine became another source of stress. I was fighting panic on multiple fronts. 

Maggie came out of surgery and went right back into the ICU. The surgery team came up with her. If a patient goes to the ICU, they do not go to the recovery room. The patient “recovers” in the ICU. Her room was full. The team from the OR was there reporting to the ICU team. There must have been 10 doctors and nurses working feverishly. I was standing out of the way. Things calmed down a bit and the handoff to the ICU team was almost complete. Just before the surgery team left, I said to everyone. “I have to say something”

I announced to all these professionals that I had just read this article in People magazine about Munchausen syndrome and if anyone thought I was doing this to Maggie, they were wrong. Everyone stopped and looked at me strangely. One of the anesthesiologists, who I knew by name, came over to me, put his arm around my shoulder, and said, “Uhhh, this would be a tough one to fake.” 
I looked like a complete idiot, but I needed to say that. It was important to me in my exhausted overwrought state that no one was even considering that. They were not, but I am sure they had various other diagnoses for me.

I have not read People magazine since.

Multi-taskin mama

Every mother has to multi-task. In fact, I’ll bet the term was invented after watching a mom handle kids, her boss and the dog while getting dinner on the table for a dinner party. It’s exhausting to be going in so many different directions at the same time. In that respect, my life is very much like that of every other mother. It’s just that the tasks themselves are different. I can hold a feeding tube, answer the phone, suction the trach and clean out the dishwasher all at the same time. What can I say? It’s an art form.

Yesterday after Maggie’s test, I was waiting for the van to come up from the garage. UCSF has valet parking for no charge. It is a wonderful service because the design of that parking structure does not consider the amount of room one needs to unload a wheelchair. There is just enough room to get the lift down, but apparently the designers forgot that the chair actually has to come off the lift and turn. That’s difficult to do with a large vehicle parked next to you. Needless to say, I take advantage of the valet service whenever I can.
For the first time ever, they forgot us. I gave them my ticket and we were left standing there for over 20 minutes. When I asked one of the valet’s “uhhh,what’s the story with my car” he just said, “OMG, are you still here?” There is so much activity there that they just didn’t notice. I was talking to various people I recognized and wasn’t bugging them either. Maggie looks pretty helpless out there and the wind was whipping. Once they realized their mistake they felt terrible. (Maggie was fine). He sent one of the guy running to get it.

Just as the van finally pulled up I heard, “Hello Ms. McDonald, Hello Maggie” I turned to see Dr. G, her neurosurgeon, approaching us. I ran into him the other day in pre-op as well and he wanted to know how Maggie had done in the procedure. He’s a very nice guy and takes a great interest in Maggie, who he has operated on countless times. As I started filling him in the valet came around and started talking in my other ear. “I left the car running for you.” I paused from talking to the neurosurgeon and said to the valet, “No, I need the key so I can get her in the van.”

Dr. G continued speaking. I pressed the button on the key and the lift started to unfold. I explained the problems Maggie had encountered in the hospital last week. Of course my lift needs repair. It gets stuck halfway down if you don’t catch it and guide it down. This is something I do automatically. Without a break in my story, I quickly turned Maggie’s chair around, caught the lift with my foot and guided it down. The neurosurgeon just stopped and looked at me saying “wow, you’ve got a lot going on.”

I wanted to say, “Hey, it ain’t brain surgery.” It was my golden chance to say that to a brain surgeon, but I didn’t do it. The van was blocking others, and there was a cab honking. I had to load her up while I shot the cabbie a dirty look. So I just grinned at him and said “gotta go, hope we don’t see you too soon!”

So much to do, so little time.