Get OFF My Lawn

There's nothing quite like scaring the crap out of two grown men first thing in the morning.

They are doing a massive remodel to the house next door to us. Work started a month ago and  will continue for another five months. The neighbors had to move out and the house is completely gutted at this point. The demolition was particularly noisy and as I write this, there is some heavy equipment running. They are pouring concrete and a tractor type thing doing God knows what. But, like anything else, you get used to the noise and it fades into the background. The contractors are nice guys. There are a slew of workers over there and the two boss types are both Irishmen. It's always a pleasure to listen to that accent and they are very friendly and accommodating to us.

I've mentioned before that I live in a row house. There is zero space between the properties. Before the work started I told the neighbors and the contractors that we would be fine with whatever they had to do, but they had to be mindful of wheelchair access. Our elevator is in the backyard and we take Maggie out through the garage.  That area abuts part of the remodel. A week or so ago they took part of the fence down between the properties. They told me they might be in our yard, and I said that's fine, but remember the wheelchair issue, and they assured me they would. They did what they had to do and there was no problem.

Yesterday they poured the concrete for the new foundation. I traded pleasantries with the foreman as the truck got into place. I walked to the store, came back, waved at the guy again and went inside.  They never mentioned that they were using part of my yard to brace the foundation. If they had asked  I would have said yes, of course, but once again I would have reminded them about the wheelchair access. Steve was moving something at 11:00 PM last night (don't ask) and couldn't get through because the forms were blocking the path.  

They arrived at 7:00AM. I called over there from the back deck, but they didn't hear me. I went out in front and the two boss types were standing in the driveway. The looked up and smiled. I just said, "Hey, I am happy to cooperate with you, but you have to move those forms so I can get the wheelchair out to the bus in the next 15 minutes. And If you are doing something in my yard ASK ME or at least tell me. I am going to say yes, but I do NOT like surprises."

Jaysus! They hopped to! That stuff was gone in a flash.

I took Maggie out to the bus with no problem and the big boss was falling all over himself apologizing. I said "it's ok, but you have to understand we have emergencies all the time and I cannot have something in the way that I don't know about. Even yesterday I had to leave early because of a problem with her feeding tube. And that doesn't really qualify as an emergency around here."

 He looked sheepish and genuinely contrite. I don't expect there will be any more issues like that. Or at least no surprises. I put the fear of God into them. Or at least the fear of the crazy lady next door. It was only a matter of time until they discovered the real me.  Steve just said, "ah, the poor lads" in his best Irish brogue.

Poor lads, indeed.

It's nice to know I still have it.

Put the LIme in the coconut, then you feel lbetter

Maggie missed special Olympics. 

 It's Friday 13th. And it started early.  

The nurse woke me at 12:45 because Maggie's sats(oxygen saturation levels)  were dropping and she was needing more and more oxygen. We got her stabilized and she fell asleep. I decided to wait on the ER because she needed the rest. She was stable and we were dong everything they would do at the hospital. Things are just easier in the cool light of morning. I came back down around 5:45 and she was still needing a ton of oxygen. 

I called the pulmonologist. He does't know Maggie - never seen her. I talked to him the other day after the xray which he called "equivocal". He gave me some attitude immediately and put the hair on the back of my neck at attention. Not a good idea. he said, "Recall I suggested we see her yesterday." I responded with "yes, that's Right, doctor and she wasn't that sick then.  TODAY she is sicker and I'm wondering if I should bring her to the ER."  pause, "Well I certainly would." A little jab, but I ignored it.   

Ok. We go to the ER, she has another chest xray and a ton of lab work. She has a very high heart rate (like 140) and  low sats (like 83) and needs a ton of O2. The also give her a litre of fluids because she's dehydrated. We are doing great in the ER and then this same doc from the phone call  comes down with a sort of "I don't know why you are here" attitude. 

 Really, dude? You guilt me for not coming, and then question why I've come. Even the ER doc and nurse called him on that. I wanted to say "Pick a side and stay there - don't just be opposite of me. It's not a fun place to be." - but I didn't.

 He figured it out soon enough. 

I got a little snippy with him and insisted we have a game plan. He threatened admission. I said "do you think she needs that" He said No, I said  "then why are you suggesting it? don't think that's what I want. I just want to know when I should be worried enough to come back."  He said come back if she needs increased oxygen and has a high heart rate. I looked at Steve and at the ER doc incredulously and said, "you mean like NOW?" He said I guess I mean higher than this. What's the highest O2 need she's ever had?  I said "this is it." He said. ok, if it gets any higher. 

 He wasn't making any sense, but I discerned it isn't an obvious  bacterial issue and the drugs she is on should be ok. Or it's viral and they won't help and neither will any other drug.  I can handle this at home, but I don't want to be stupid or cavalier about when we should go.  

When he left the room I looked at Steve and shook my head. I said "that was unnecessarily difficult. Steve just smiled wanly and said, "he was teetering on the brink." I said "Brink of what" Steve just paused and said "we both know." I smiled because I did know. I was snippy, but I didn't take his head off like I can and will if I have to. But he WAS on the brink of that. I'm getting better in my old age. 

So we are home and hoping two things. 1) this starts to go in a positive direction or 2) that's he's not on call this weekend. I need someone I can work with and he aint' it.  The ER doc and nurse kept telling me NOT TO HESITATE TO RETURN.

We left there with a dx of "presumptive viral pneumonia"  and told "to get plenty of rest and fluids."  After all tht it sounded like a commercial for Bayer aspirin. 

Apparently Maggie's only olympic event was rapid breathing. She medaled. 

Everyone's a winner

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.