Keeping entertained

Trying to keep Maggie entertained this month is tiring. We definitely have an outing every morning. She needs to get out and about and loves doing that. Once we're out she's great. Maggie is happy wherever we go; a walk in the park is just as much fun as a trip to the hardware store. The problem is waiting to go out.



She is ready to go at 7:00AM. I am not. It's generally 9 or so before we get going because it helps if places are actually opened for business. Also, I have to time things to work with her schedule of procedures. We only have three hours between procedures and I don't want to do them when we're out if I can avoid it. For example today she has therapy at 11:00. We can do the procedure, go to the bookstore, go to therapy and be back in time for the next procedure. However, if I start too early, we can't get all that accomplished. So she has to wait.

I am trying to conserve my body a little bit and minimize the lifts. I've pulled something in my left arm and every day it hurts more and more. Considering I have to lift her 66lbs twenty times a day, the chance of it healing quickly is slim. Minimizing the lifts means she waits in her bed, which is full of things to play with, until I'm ready to rock and roll. (emphasis on roll).


Maggie's bed is very safe, my husband created it especially for her. She cannot fall out, there's room for lots of stuff and she can see what's going on. She slams the side rails for entertainment or to get attention. I can see her from where I sit and keep up a running dialogue with her. I stepped into the kitchen to get a cup of coffee. I could hear her in there thrashing around and I kept telling her I would be right there.

When I walked back in it was quiet. Maggie had fallen asleep. All her hard work trying to escape must have worn her out. I had to grab the camera. She woke up as I snapped this, you can see her peering out through the slats.

I was out of the room for maybe two minutes. In that time she had worked herself into this position, unzipped her pants, ripped her diaper and fallen asleep.

Oh well, at least we had stuff to do before we went out.

Friends in Tight Spaces

In the years since the enactment of the American’s with Disabilities Act (ADA) there have been some improvements made in the public’s sensibilities of the issues disabled individuals face. Everything from parking spaces to access is improved and the things that are not actually improved are at least on the radar. We have had many experiences of improved access or sheepish apologies because people are at least aware of the issues now.

Interestingly one of the places we have had the most difficulty is the hospital. Two separate hospitals, in fact. Why is it that there are seven disabled parking places in front of the supermarket but only three at the hospital. The second hospital has many disabled spaces but they are not wide enough to get a wheelchair unloaded. Isn’t it apparent that more people at a HOSPITAL will use a wheel chair than people in the general population? Also, haven't they figured out that an absence of steps does not automatically make things accessible? I hate to play enforcer of rules they already know.

When we were registering Maggie for her procedures the other day we had to go into Hospital admitting. It is a busy place with numerous chairs for patients waiting to be called into the cubicles for the admission process. There is room for Maggie’s chair, but she is inevitably blocking someone. That is no problem; we just roll her out of the way. Once called to the cubicles, it is more difficult.

The cubicle has a desk for the admissions person and two chairs for the patient and a companion. There is not much room for anything else. Especially not a wheelchair. As I tried to get in from the corridor, I automatically pulled one of the armchairs out of the way. The following dialogue ensued:

The admissions woman wagged her finger at me and, smiling, said, “NO don’t move that. She can wait in the hallway.” (“She” is Maggie.)

I said, “No she can’t” and continued. I thought she was concerned that I was going to the trouble, but that was not it. She did not want me messing with her chairs.

She said, (more insistent) “No. Leave that there.”

I looked up puzzled and said, “Don’t worry, I’ll put it back.”

She said again, “But she can just wait in the hallway.”

I said, with a bit more emphasis this time, “NO, She cannot. I have to be next to her to suction her.”

I proceeded to move the chair and put Maggie’s wheelchair in its place. The wheelchair is bigger and the cubicle was crowded.

She smiled thinly and said insistently, “The problem is I have to be able to get out.” At one point in the process, she would have to make copies of something.

Undeterred I continued situating Maggie and sat down in the other chair, looked directly at the woman, and said, “No, the problem is that Maggie’s the patient… (pause)… she needs to be admitted, and she needs attendant care. I will certainly move her so you can get by.”

Then I get the doe eyes and gentle correction for my impatience. “Wow, you’ve probably been here all day.”

I just smiled broadly and said, “Nope, we just arrived.” (The “You pissed me off” was inferred).
Admission went smoothly and she was able to get by the chair without any problem. (Whaaa??) I backed Maggie out of there, looked at her armchair in the corridor, looked at her, smiled and left.

She can put her own chair back.

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.

Medical Monday

wow, Monday was a medically involved day.

We started the day back at the hospital for a previously scheduled test. No drama this time, just an upper GI, which for Maggieis a piece of cake. She doesn't even have to drink the stuff. They just put it in her stomach through the feeding tube. Everything seems to be working reasonably well, though I'm sure there's some little surprise awaiting us. The radiologist said he needed to "study" and "analyze" the films thoroughly. I've been around doctors enough to know that means he sees SOMETHING but wants Maggie's own docs to tell me. That's fine, because she's doing perfectly well and any "problem" will be academic only.

We came home and were heading up in the little elevator we have in the back yard. This thing just fits Maggie's wheelchair, but she can't be in it by herself, so I have to squeeze my ample butt in there. It's like a game of twister. I have to stand on tip toes to get the door closed while holding the button to keep the lift moving and I'm leaning across Maggie to do that. It's a slow ride to the deck outside her room. About 1/3 of the way up I heard a noise and watched as her trach popped out of her neck. The thing broke and was completely out and I'm balanced like a wanna be gymnast trying to keep the lift moving. No one else is home, of course.

There are procedures one is supposed to follow when this happens. These procedures are written by people who live in sterile laboratories and have perfect control of every situation. This is not the world I live in. I let go of the button and just shoved the broken trach back into place. Now I had to hold that in place and still get the other 2/3 of the way to the top. I switch hands. (right hand RED!) and contort to make it happen. I now have to get the door open and get her into the house driving the chair with one hand and holding the trach in place with the other. Mission accomplished, again.

If the lab people I described were watching, they would have fainted. We are several standard deviations away from sterile at this point. I knew Maggies' nurse would arrive momentarily and this woman is like clockwork, so I just stood there holding it. Changing the trach and threading a new one takes three hands.I have done it alone, but it's safer not to so I just waited a minute. She arrived right on time and we made the change.

Two hours later the new one broke and we did the whole thing again. This time, though, she was lying in her bed, so the drama wan't there. Maggie loves to yank on the ties that keep the trach in place and has successfully broken several of them. Her pulmonologist says she's his only patient that does this (I couldn't be prouder). The second one probably broke from wear, though, so I cannot blame it on the Magster this time.

We finished the procedure for the second time and headed off to another appointment.

Now, alls quiet on the western front. What excitement awaits us this evening??? Not my problem. I'm going out to dinner with some friends....

Teach Your Doctors Well

Maggie is home again. Woo Hoo! Thanks to all of you for the good wishes.

They changed her to oral antibiotics and sent her home. She is really not very sick. Apparently the broncosopy she had on Wednesday just overwhelmed her. Thursday was rough, breathing wise, and after the chest xray showed infiltrates, the pulmonologist admitted her. She had a rough evening on Thursday, but slept well and was much better on Friday. I know from experience if you don't get out of the hospital by noon Friday, you are stuck until Monday. I started lobbying hard, but it really didn't take much to convince anyone.

Maggie kept busy working the controls on the bed at 2AM. She kept trying to make it move but it was hard work for her. Either she couldn't isolate the finger to hit the button or she couldn't press the button hard enough. She is concentrating in this picture, not sleeping. Once in a while she would get the bed to move and then she could not stop laughing. This is when I knew she didn't need to be there.

I had a huge fight with two young residents on Thursday night. July is a bad time to go to a teaching hospital. All the new docs start on July 1. Not only are the new green doctors a bit over anxious, there are the newly promoted 2nd and 3rd year residents who are preening for the new docs.

It felt like the more senior resident was conducting a class for the younger doc entitled, "I will show you how to deal with a parent." Perhaps her heavy handed techniques which included doses of parental guilt and scare tactics work on some parents. Me? Not so much. I changed the curriculum of that class a little bit. Hey, it's a teaching hospital, I was just doing my part.

My husband says after I did my part those two residents are reconsidering their career choices.
I am Maggie's voice - and it turns out she has a REALLY big mouth.

P.S. Shout out to Junior, one of my loyal readers, who IS still inthe hospital with pneumonia. Get well, my young friend. Try moving the bed, it apparently has healing powers.

Streak comes to an end

Our longest ever streak of staying out of the hospital (as an inpatient) has come to an end. Maggie has pneumonia and despite my lobbying to care for her at home, she was admitted late Thursday afternoon. She could not keep her oxygen levels up without supplemental oxygen and as the fever started showing up I figured I better call. Given yesterdays procedure and anesthesia, they can't take any chances.

I'm sure we will be here for the weekend (blah!). One young resident said something about a 7-10 day course of antibiotics and I said "WHAAAAAAT ?" She looked nervous and I said, we'll just wait and see how it goes. She is not a "decider." I know if it's possible the docs will let her go home and continue oral antibiotics. A few days will determine that.

So, for now, here we sit. The things about pneumonia is it gets worse before it gets better. No fun for Mag or any of us.

I did see the GI doc today in the hallway. He asked why we were here and I told him. He asked if they were going to find anything in her lungs. Hahahahah. Now it's just a funny joke. . I just smiled and said, Maggie's like a box of cracker jacks, there's always a little prize.

Actually, he's a really nice guy - this medium makes it sound like I don't think so.

Thank God for Wi-fi!

Alls Well

Thanks to everyone for the good wishes. I was growing increasingly nervous as the day went on. We are home - it's just before 9:00PM, so it was only 6 hours total which is not bad.
The procedure started about 20 minutes late - I was ready for a couple of hours, so that was a nice surprise. Things went about as expected. We didn't get terrible news, which is a huge relief, but things have definitely deterioriated in the last year. Why? Who knows? Some cultures and the test Monday will tell us that. Next steps? Stay the course unless the cultures show something freaky.
I have been pushing for this test for several months. In March (4 months ago!) Maggie swallowed the tip of a syringe. I wrote about it when it happened. Maggie World: No tip required
It never reappeared. We searched for weeks and I called over and over again. The GI doc was sure I had just missed it. The pulmonologist was concerned enough that they ordered a chest x-ray in May, (which I also wrote about Maggie World: Lucy and Ethel) but it didn't show up. They didn't expect to be able to SEE it because it's rubber, but they could tell nothing was plugged off either.
My continued insistence that symptoms were present finally got them to schedule this but the syringe tip alone was not enough. These pesky symptoms had to be investigated. The GI doc told me in pre op he would NOT find that syringe. I said that's fine with me, I don't want it to be in there.
Of course it was there. Exactly where I said it would be - stuck in her esophagus. In fact it was acting as a perfect plug preventing secretions from dropping down into the stomach backing up into her mouth and probably causing her pulmonary symptoms as well. Hmmm. Perhaps they should listen to moms. I did have some basis for this. She swallowed a tooth once before and they had to get it out of her esophagus months later. Her body doesn't work right and things can't go down (hence the feeding tube). That was an “incidental find”, it wasn't causing any symptoms. It was simply the most expensive tooth extraction in history. The GI doc came out of the OR with the thing in a specimen jar and said “You were right, thanks for staying on us”
If that's the root of the problem, she may get better without any more trouble. If she is aspirating, though, as we all suspect she it, we will have a road ahead yet.
But we're back and she's trying to pull her oxygen off and she's driving Steve crazy, so I better go.