Technical difficulties of the third kind

This is a new computer and I am constantly surprised when I press a button and something unexpected happens. I was just about done with a post yesterday when it disappeared from my screen. It was quite frustrating, and I had to just walk away.  Hopefully the computer did not decide the post was too dull and did a self edit. I am in big trouble if that happened.

I awoke early this morning and took a shower before coming downstairs, which is unusual for me.  Generally the mornings are so jam packed that I have to wait to shower. It was leisurely and nice and I arrived downstairs refreshed and ready to face the day. it didn't last long.

 As always I went straight to Maggie's room where I found Lucy the nurse struggling to hold a broken trach tube in place and get a new one ready. I hopped into action. It is very difficult to change a broken trach tube alone. You have to hold the old one in place and then switch it for the new one and then hold that in place while you thread the ties through. Basically you need three hands. Plus, this is all done on Maggie who cannot stay still. The trach change doesn't hurt her and she is very cooperative, but her movements are involuntary.  I took over while Lucy held the tube in place and Maggie was all squared away with a nice new breathing tube.

Then I had a cup of coffee, though the caffeine jolt was unnecessary

This is the second heart rate raising incident in two days, though the other was just for a moment. On Labor Day Maggie and i went downtown to shop. We didn't buy anything, but we wandered around Union Square and hit both the San Francisco Center and Westfield mall on busy Market Street. It is a shopping mecca and Maggie loves it.

Market Street is the main artery in downtown San Francisco. it is an incredibly busy place with street cars and buses everywhere in addition to taxicabs and regular cars braving the madness.

As we wandered back toward our car, we had to cross Market. No problem, there are plenty of signals and it's pedestrian friendly. We crossed at this very intersection shown in the picture and for the first time ever, the front wheel of Maggie's wheelchair got stuck in the streetcar track. I pulled and tugged but nothing happened. Buses and streetcars were waiting for the green light to proceed.  I could see the pedestrian light counting down and could feel some adrenaline starting to pump. Maggie was oblivious to this of course. She thought it was hilarious that I kept yanking on her chair I yanked again with that mom strength and out it popped. We got to the other side of the street and I saw a man and a woman with their eyes popping out watching us. The guy just said "good job there." I nodded but just kept walking, not trusting my voice yet. 

 There wouldn't have been any real danger, of course, Maggie was clearly visible and she would not have been hit or anything. But Maggie and I would have shut down Market street while we got her unstuck.  That alone was getting my heart racing.  

As we drove home, I told Maggie she was Nell and I was Dudley Doright. She was unimpressed. I think she puts me in more of a Snidley Whiplash category. After all, I'm the one who got her stuck on the tracks. 

That's three very different types of technical difficulties in three days. Of the three, I'll take the computer problems. they are aggravating, but not scary. 

Here's to a calmer remainder of the week. 

Waiting for the other shoe to drop....

Six weeks after breaking my foot I am back into regular shoes. Yay!! It's still a bit tender and my confidence needs a bit of work, but it's time to move forward.

Let me tell you I will not miss pushing Maggie in her chair while limping behind it in either the walking boot or the "Darby"  shoe that I've been wearing since April. We were a bit of a pathetic site. Yesterday at the museum some concerned lady said to me, "Why are you doing the pushing with your sore foot?"  I just smiled and said, "what are you gonna do?""  She smiled back, but in a sad and sympathetic way.

Too bad I didn't have a basket, we probably could have raised some real money.

Yes. It is time to lose the special shoe.

When I went to the orthopedist yesterday he asked about the pain and function.  I told him pain was manageable but stairs were still difficult. My instructions are to use the Darby shoe as needed but I should expect to need it less and less. Good news.

 As he wrote in my chart and we talked, I mentioned that I had to hurry down the stairs in the middle of the night without the shoe on and felt like I had set myself back a little bit. He continued writing and said without irony and without looking up, "well, don't do that." (Makes sense). I just said nonchalantly, "well, it was a bit of an emergency because my daughter's trach broke and the nurse was yelling for me to help her."

His head whipped up and he looked right at me and said, "What did you say?"
Thinking he didn't hear me, I  pointed to my neck and said, "she has a tracheostomy, and her trach tube broke."

I really was just saying it in passing because it explained why my foot was still sore.  It was just light conversation as the appointment was wrapping up.  But he was clearly and completely surprised by my statement, and I think my nonchalance was just as surprising as what I said.

 He stared at me with that perfectly calm doctor face, but his eyes were wide. Without looking away he said, in that perfectly calm doctor voice, "Yeah, I can see where that might require you to hustle."

His calm demeanor and voice were totally betrayed by the sudden rapt attention and wide eyes.

I've seen doctors remain calm on the outside when they clearly weren't inside and it can be very scary. But this time it was funny.  He has absolutely no reason to know anything about Maggie. He is my doctor, not hers, and not affiliated with any doctor or hospital that I use with Maggie. Her trach, broken or otherwise, didn't effect him professionally at all. But he knows what having a broken trach means and was concerned. It struck me very very funny to see his surprise give way to his immediate professional reaction.

As I walked gingerly back to my car -- in my very own shoes -- I found myself giggling.

Who else could have that conversation and interpret all the nuances the way I did?
Hardly anyone.
Who else would find it so very entertaining?
I'm thinking no one.

That made me laugh even harder.

A Distressing Morning

Saturday morning, we had to sign papers for the refinancing of the house. The notary was at our house at 8:30AM so we could sign the dozens of documents to make the horrible loan process end. We have been working on this for over three months. Even though we have excellent credit and a ton of equity in our house, it seemed as though this loan was not going to close. I found the process to be quite onerous – much more so than in past times and we had to jump through a million hoops to get it done. Other missteps by the lender almost caused me to pull the plug on the whole deal just a few days before closing, but the thought of starting again, or going through all that for nothing forced me forward.

Of course, when the notary arrived with the papers there were questions.  The documents had mistakes and were unclear. The notary kept pushing us to sign anyway saying we could rescind within three days, but that is not how we roll (and that is bizarre advice for a notary to give). She was clearly irritated with us, but neither Steve nor I cared. The financing for the house is a little too important to worry about the feelings of the person whose only role in the whole thing was to witness our signatures.  We were on the phone with the lender clearing up the confusion. Their work was sloppy and trying to unravel it on the phone was difficult.  They were asking me to compare these documents to ones forwarded to me in an email several months ago to explain the confusion. This did not please me but I went over to my computer to do the search.

That’s when Maggie had an episode of respiratory distress. 

I hate those things; they are scary as hell. They are scary for Maggie and for anyone who happens to witness it.   After the second one in September, we took her to the ER. They wanted to admit Maggie then, but they did not know what they were looking for. I cajoled and promised to follow up with the pulmonologist and we avoided admission and allowed to go home. She had an exam under anesthesia a few days later and the doctor could give me no reason for these episodes. But they seemed to stop, so I did not worry.

Now they are back. There were a couple of episodes over Christmas break, two last Thursday and one on Saturday.   That is five in about three weeks. Not good. I do not see any pattern to them and I cannot figure out what triggers them. Something happens that starts a chain of events and in about 10 seconds, Maggie is not breathing and turning blue. She seems to be holding her breath and because she is panicked, she cannot “remember” how to stop herself from doing so. Her arms are extended and fisted and it is very frightening. They can last several moments and even when she starts breathing again, she is completely freaked out and needs a large amount of oxygen to calm down and get back to normal. Needless to say, everything stops when that happens. 

On Saturday, it hit as I was on the phone with the lender and the notary’s irritation was growing. I saw it start and said “Steve, she needs oxygen.” Steve was already in action before I even said anything. I told the lender we had a medical emergency and she needed to figure things out and call me back. I look at the notary who had gone from irritation to shock. I actually felt a little sorry for her. If she could have flattened herself against the wall, I am sure she would have. I tried to sound calm and said, "don’t worry, this happens sometimes, we know what to do" -- all while I hoping we really did.

Maggie recovered. The lender called back acknowledging mistakes resulting in an error in our favor (of $32) and said keep it. The notary whipped through the paperwork and could not get out of here fast enough.  

 After she left and we all relaxed, Steve and I could not help but laugh at how completely ridiculous our life can be. 

At least we made $32.

Fire one..Fire two

Yesterday there were two heart-stopping moments with my darling teenage girl. I had plans to go out for about two hours. Maggie's two events were just before I went out and right after I came home. I love how she waits for me.

Around dinnertime, I was just getting ready to go meet a friend of mine whose daughter has extensive disabilities as Maggie does. I am very lucky to have a group of parents with whom I can connect. Maggie was in her bed and the nurse was just lowering the side of the bed so that we could catheterize her together before I went out. Maggie’s bed is high. The mattress is just below chest level for me. It is perfect because Maggie can be safe and the caregivers do not have to bend over constantly to tend to her needs. The side of the bed simply folds down like a flap so that it is against the bed when it is down. You have to stand back for just a second to give it room to come down.

I was standing at the head of the bed while the nurse lowered the side. We have done this a million times and it is just automatic. When the side was at about 90 degrees, Maggie moved unexpectedly and rolled right onto the outstretched wooden side. The nurse was holding this with one hand when it suddenly became 65 lbs heavier. I screeched and lurched for Maggie and lifted her right back on to the mattress without incident. Maggie looked surprised and we both looked frightened. Fely, the nurse, remained professional. She never reacted at all. I do not know how she held that thing in place but she did. Crises averted, but it is a good thing there were two people there.

I went to dinner knowing that Steve and Tim would be home a few minutes later. All was well. When I got home, Maggie was wide-awake in her bed throwing pillows and anything else she could find. I talked to her for a while and then sat and talked with Steve.

The nurse was coming in from Maggie’s bathroom and I suddenly heard the nurses alarmed voice calling “SALLY! SALLY! SALLY!” I was in there in one step. Her trach tube was out and sitting on her chest. HOLY MOLEY! This time the nurse was panicking and I was just quickly getting a new one in. We keep a supply of clean trach tubes taped to the head of her bed. The rule of thumb is to keep the correct size tube and one smaller in case there is difficulty getting a new one in. You have to move quickly so that she doesn’t get into respiratory distress. (Note: the ostomy (opening) contracts quickly). Maggie was fine, in fact, she was grinning like a Cheshire cat. She loves to make everyone jump.

We have to change her trach tube every week. There are many times that Maggie has broken the tube because she is constantly pulling on the ties. She even does it in her sleep (see picture - note the knot is on the opposite side from where she is pulling).The flange gives way and we have to jump to change it. I presumed that’s what happened this time, but no. Steve looked at it and said, "it’s not broken, she unknotted it." Apparently, while the nurse was in the bathroom and I was out of the room Maggie was bored and went to work on the ties that hold her trach in place. The trach ties are triple knotted to prevent this, but Maggie is very persistent. She was probably working on that for hours whenever she was alone.

Because of the advances in the world, many (most) trach users have Velcro ties. I laughed at that knowing that would not even present a challenge for Maggie. Now she can get triple knots out. Great. I am going to have to get out my Girl Scout manual and find some new knots.

I am meeting other friends for dinner this evening. I think I will sneak out and sneak back in.

Today's gratitude: I'm thankful for many circles of friends