Maggie's New Voice

Someone pointed out to me that when I talked about the love/hate relationship with the trach, I left out the fact that it silenced Maggie's voice and her giggle. That definitely falls into the HATE category.

I find it amazing that someone had to point that out to me, though. For the first few years I couldn't stand it when Maggie laughed or cried and no sound came out. I guess, like everything else in our lives, that has become "normal." Her new laugh, though silent, is just as mirthful. Though I miss the sound I know she is happy and apparently that is now enough..

Of course Maggie's abilities with her dynavox have exploded in the past few years and her communication skills are better than ever. Five years ago, before she had the trach, she as still learning how to operate the device and we never heard the things we hear now. I don't think she was still learning to formulate a sentence. She started telling her jokes after she got the trach too. So much of Maggie comes through that dynavox that it is hard to even remember when she wasn't as well versed in communication. I still miss the sound of her voice, but she "talks" so much more now than she did then.

This week she is learning a new dynavox. After much study of the various options and months of waiting for reports, and then denials so we could get to proper approvals, her shiny new Dynavox Maestro arrived. With the help of Maggie's AAC specialist I was able to transfer the pages from her old device to the new one. There are glitches and things to be worked out, but this machine is very cool. Check out the two next to each other. The Maestro  is smaller and lighter than her old one and has a lot more capabilities.

There is a new "voice" on the Maestro which sounds a little like a techno-Marilyn Monroe, sort of breathless and flat at the same time. That's hilarious. For some reason the speaker sounds like it's blown but only when its performing some functions. On others it sounds fine. It's annoying, but fixable. Other glitches are equally annoying, but likely can be remedied fairly easily once we learn what we are doing.There will be a steep learning curve for a while. The dynavox rep told me I could hook it up to the internet and download fixes right to the machine. Right. I can barely figure out how to turn it on.

One criticism I have is that this very expensive machine does not have a case that works for a wheelchair user, and I would guess wheelchair users are a significant percentage of their customer base.  It does have a slick case sort of like an IPAD case, but if the case is on you cannot attach it to her wheelchair. Also the strap for the machine is on the bottom so you cannot hold it while attaching the machine to the pole. It is very difficult to mount it without dropping it. I have asked whether there is another way to protect the machine from both of these problems, but have not yet received a response. I'm hoping there is some easy fix to this stuff too.

Maggie will also have to learn the tricks of this new device, but I'm sure her success will be much faster than mine. This is her voice, after all.  

Can somebody shut her up?

A couple of weeks ago I referred to the moment when I found my voice as a parent and advocate for Maggie.  A couple of people asked when that was. I could have sworn I already told this story, but I looked through my archives and did not see it. My “filing” system is terrible, though, and I may have missed it. If this is a repeat, I apologize.

Maggie spent the first three months of her life in the hospital and then was in and out most of the next two years.  I was at her side every possible moment and did not realize how much I was absorbing and learning about medicine and Maggie.  Sometime during that first summer, when Maggie was about 5 months old, we took all three kids to Lake Tahoe. My parents had a place up there and it was a relatively easy vacation.

Maggie has always had a feeding tube. Today it is a “button” to which I attach the tube when she needs to eat.  Then, however, it was just a long tube. Of all the things going on with her, this was the least dramatic. Her respiratory and other issues were more pressing.  Accordingly, I received very little instruction regarding this tube, had no idea that it could fall out and did not have any replacement. Of course, it fell out while we were in Tahoe.  I did know that you had to get something in there immediately or the hole would start to close and she would have to undergo another surgery to reopen it.

 My parents were out to dinner so we just packed the three kids into the car and drove 7 miles to the urgent care center in Tahoe City, a town of about 2,000 people. Believe it or not, Tahoe City is not known for innovative medical care. The doctor took one look and said we had to go to the ER in Truckee, a town of perhaps 10,000, another 14 miles away. Off we went.

Needless to say, the Truckee hospital did not get too many feeding tube issues either. They wanted to send us to Reno about 45 minutes to the east or to Sacramento about 100 miles west. That was ridiculous. I did not know much about the tube, but I just knew in my heart that it did not warrant any more car trips or any more delay. I said, “No. This is easy and we can do it here.” The doctor looked at me as if I was crazy. I said just stick a tube in there, anything; we have to keep the hole opened. He was clearly not comfortable with that at all.

I gave him Dr. DeLorimier’s phone number. Dr. DeLorimier was a world-class surgeon who had already operated on Maggie 5 or 6 times in the few months she had been on earth. The kind Truckee doctor said, “Wow, he’s famous.” I said, “Yes, he is. Please call him.”  By the grace of God, Dr. DeLorimier was on call that night and talked to the Truckee doc. When the doctor came back into the room, he looked perplexed.

“What did he say?” I asked politely.

The doctor looked me in the eye and said, “He said to do whatever you say.”

I (smiled to myself and) said, “Good, let’s get to work.”     

That was the moment. I just KNEW this was not that big of a deal and having this famous surgeon back me up to another doctor was the icing on the cake.  I trusted my instincts and they paid off, and I have trusted them ever since. I found my voice and have not shut up since. .

Just to finish the story - In five minutes, Maggie had a new tube. The doctor, now fascinated with her story, was asking all sorts of questions like “what else is wrong with her?”

All this time Steve had been entertaining the boys who were 4 and 6 years old.  They went for Ice cream and got toys to keep them entertained in the waiting room. When Maggie and I were finished, Steve was reading a real estate magazine because it was the only thing available.  Steve, who had no idea what had gone on in the exam room, said, "Did you know you can buy a 4 bedroom, 3 bath house here for $160,000?"*  I just looked at him and said, "Unless you want to buy me a helicopter to get Maggie back and forth to UCSF, I am NOT moving here."

*remember this is 16 years ago. Couldn’t do that now. Wish I’d listened to him then…

I forgot my thankfuls yesterday.

November 8, thankful for my brother Pat, who has a birthday today. He always makes me laugh.

November 9.  Thankful for a clear crisp morning, and a beautiful walk on ocean beach with a friend and our dogs.

Today, thankful for Irish pubs, which are the same everywhere, and for making arrangements to host Eddie’s graduation party at one in Reno.