Chew on this for a while.

Recently I rediscovered Grape Nuts cereal. I forgot how delicious it is and how very very long it takes to finish a bowl. Each spoonful requires a lot of chewing. One of the upsides of this: you can get a lot done while you eat breakfast.

Sunday morning I was chewing and chewing and hanging with Maggie. She was bored at my long periods of silence. (No talking with your mouth full!). A bored Maggie is not a good thing. When she is bored she frequently starts pulling on her trach ties. It's a bit disconcerting to say the least.

This activity is discouraged at every turn. Maggie can pull out or break the tube very easily - and has done so dozens of times. A broken or dislodged tube sends us all into a flurry of activity. We have to work fast to get the new tube in before she gets into trouble with her breathing. Even if she doesn't break it or pull it out, the constant tugging on the ties loosens the whole thing making it more likely to fall out at a later time.

As I chewed I inspected her trach ties. They were extremely loose. Perhaps the nurses had also noticed this because someone had done 7 or 8 knots in the ends. Tying additional knots will prevent Maggie from undoing the ties (which she has done on occasion) but it does not do anything about the looseness of the tube. I figured I could re-tie it while I finished my cereal.

Retying the trach while Maggie is in the chair is difficult because the headrest on her wheelchair is in the way. Initially, Steve came over to hold her head forward while I worked but it was going to take too long because there were so many knots and some of them were really tight. We put her back in the headrest and I went to get the tools to loosen the knots and scissors to cut off the long ends once it was re-tied.

When I couldn't get a knot out, Steve, the fly tying fly fisherman would step in.

Then I got into a rhythm. Take a bite of cereal, undo a knot while I chewed. When I looked and saw my "still life with Grape Nuts and trach tools,"  I marveled at the absurdity of our life and I  wondered if everyone was this efficient while they ate Grape Nuts.

Funny, I've never seen this on the commercials.

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

Take a Deep Breath

When Maggie came home from school yesterday, she was happy and rambunctious. Her breathing sounded thready and loud, though. The nurse and I agreed it was time to change the trach tube. Maggie was very cooperative throughout the procedure.
Changing the tube is easy. Tying it is difficult, especially for a left-handed mom with dexterity issues. The small flanges on the side of the trach have to be threaded with the ties which are then doubled around the back of her neck, threaded through the other side and tied tightly enough to keep the trach in place, but not so tight that Maggie’s neck is constrained. Then it has to be knotted over and over and over again because Maggie did not inherit my dexterity issues. Considering she has cerebral palsy, her ability to undo knots, zippers, buttons etc is unbelievable.
For a planned trach change like yesterdays, we get everything ready ahead of time to make it easier. The trach is threaded on one side ahead of time so things go quickly. That way I can hold the trach in place with one finger while I pull the ties around and thread it through the other side. In an emergency change, because of blockage or breakage, it is a bit more difficult. You have to move fast and just have to get the new one in immediately. Trying to secure it is very difficult because you need three hands, one to hold it in place and two more to thread the thing. The emergency likely means Maggie is thrashing around or crying, which adds to the challenge. They do make Velcro ties that are 1000 times easier, but those will not work for Maggie. She LOVES ripping Velcro and we would be in an emergency situation every two minutes.
The trach is changed at least once a week, and really more like every 5 days. That seems to be the period of time she can go without sounding like a Mack truck when she breathes. The nurses are not licensed to do the trach changes (though they can in an emergency) so that means I have done this probably 200 times in the past two years. I am good at it, but it still gets my heart rate up.
That trach change lasted about 12 hours. I heard the nurse yelling for me at 5:00AM and came running downstairs. The new trach broke, the tie pulled through flange, and she was holding it in place. Because she was there holding it I could prepare the new new one and start the procedure all over again. Heart rate goes just a little faster when you are pulled out of a dead sleep.
Now it is 6:02AM and I have read my email, checked facebook and written my blog. The coffee is ready but somehow, I am not interested in that first jolt of caffeine yet. I feel like I have already had 10. What I need to do is take a deep breath – and be glad I can do that without plastic and ties in my neck.