Sleepless in San Francisco

Very little sleep for me last night. I went to bed and fell asleep fairly quickly, but I woke up about 2 in a panic and never really went back to sleep after that. Why the panic? Was there a problem with Maggie? No. Did the nurse take ill? No. Were there burglars, raccoons, skunks or other invaders? no no and no. I was imagining everything that could go wrong when Steve and I go out of town later this month. I knew the worry would hit sooner or later and I'm glad it took so long to arrive, but it's here now. 


Travel has been out of the picture for us for some time. Taking Maggie with us is unthinkable and leaving her behind is a logistical nightmare. We took a couple of trips when Maggie was little and we could carry her with ease and change her diaper without causing a public spectacle. Now she's bigger and has the trach and requires constant care. Taking our show on the road is not manageable, enjoyable or the least bit relaxing for any of us. Leaving Maggie behind requires an incredible amount of planning and scheduling of nurses, visitors etc so that Maggie is not completely bored while we are gone. It is expensive because we have to pay for the extra nursing shift out of pocket in addition to whatever travel expenses there are. It is easier to stay home and that's what we do. 


But every once in a while, you just have to make plans and go. In the 18.5 years of Maggie's life, we have gone away for a single night together twice. Last year we threw caution to the wind and went for two nights for our 25th anniversary. We were just up the coast and could drive home in 3 hours if necessary - and it almost was. One of the nurses was hospitalized and I spent about 4 hours of our 48 hour getaway frantically calling every nurse on the list to get a replacement. I managed to pull it off, but only because one of the nurses took pity on us. 

This year we are going for it. We are actually boarding a plane and heading to New York City and then to Philadelphia to attend a wedding. Steve and I have not been on an airplane alone together since 1989. That is 23 years ago - before the existence of Homeland Security or the TSA. You could bound onto the plane with shoes intact. I think it's time we tried this. We will be gone four nights and five days. I am really looking forward to it and I am  scared out of my wits at the same time. 


I have spent the last month or so working on this. I asked for and received approval for the cost of the additional nursing hours, so the cost is just the travel. I have been working on scheduling nurses with the admonition that they cannot cancel or get sick. The first layer of coverage is in place and now I have to work on a safety net - or an "on call" layer in case a nurse gets sick or injured.  I have to lay in supplies and medications and make sure Maggie gets out a little bit while we are gone. Tim will be here, and he will be a huge help keeping Maggie happy, but we will NOT be able to turn around and come home if something happens. 

Nothing will happen. Nothing will happen, Nothing will happen. Nothing will happen. 


I don't think sleep is in the cards for July. 

The morning after

The obligatory shot of the turkey and a picture of the colorful vegetables and sweet potatoes.

Thanksgiving was great. Family came here, which is perfect. It's just too difficult to take Maggie out of her element. I would much rather do the cooking and prep work than try to cart her off somewhere. Everything we need is here and set up for easy use. We needed it yesterday as Maggie needed an oxygen boost for a bit mid day. Not sure where that came from because she seemed healthy. Maybe something is brewing. 'Tis the season for illness as well as shopping, holidays, family, eating, etc.

Just to complicate my life, I did start the day out with an unnecessary stressor. I offered to bring the turkey over to my moms house and put it in the oven for her. The problem was that both turkeys were going to take five hours to cook and both of us were planning to eat around three. I was waking up in the night worrying about how to get it all accomplished in a short widow of time. My plan was to get mine stuffed and in the oven and then race over to my mom's house to do the same thing. That was going to take precision timing.

I made the stuffing on Wednesday - a ton of it to stuff two big turkeys. I had the potatoes peeled and boiling and the cranberry sauce all cooked by 7:45 and then had to get my turkeys.

I always order my turkeys from Arguello Super (home of the World Famous Turkey Sandwich). It's just a couple of blocks form here and the turkeys are fabulous. The best part is you can pick it up Thanksgiving morning, meaning no ridiculous overcrowding in the refrigerator Wednesday night. I arranged to pick up two turkeys, one for us and one for my mom. I was standing at the door when the store opened at 8AM. These are big birds, 21 and 22 lbs. I knew I couldn't carry them home so I brought my old lady shopping basket. I put my 43 lbs of turkey in it and wheeled it home. .

Really sorry I don't have a picture of that to share with you.

My bird was in the oven by 8:30 and I headed over to moms. Steve called while I was en route. He was exasperated. Ms. Maggie was going crazy and he couldn't get the talker to work. That was making her crazier and she was trying to pull her trach out. I tried to talk him through the fix, which I can do in my sleep, but I just know it, I can't explain it without looking.  I was sitting in my mothers driveway trying to explain it and finally said, "Look, if I could hang up and get this turkey stuffed and in the oven, I could be home in 25 minutes." He basically had to sit next to her and hold her hand down until I got home. Come to think of it, that episode should have been a warning that she didn't feel well, because that is definitely not her norm.

I stuffed mom's turkey and put it in her oven, gave her a kiss and left. My sisters and brother were headed there for dinner and one of them would get it out when it was done. I was back home by 9:45, fixed the dynavox in about 30 seconds. (Steve was on the right page to fix it, but we were describing different parts of the page to one another and didn't realize we were talking about the same thing.)

The rest of the day went off without a hitch. The food and company were excellent. The dishes are done. The 49ers lost, but they are still 9-2, so even that was palatable. The nurse arrived at 11:00PM and I fell into bed. And then woke up at 4:30 AM and never went back to sleep. I got up at 5AM and had a cup of tea and said goodbye to Tim who had to go to work early. Now it's 6:30 and I'm out of gas, but the nurse leaves at 7.

The term "long weekend" is taking on new meaning. At least there are leftovers.

I need coffee.

Girls Rock!

My role as camp director is on hiatus once again. Maggie is in Girls Rock Camp every morning this week.  It is like an empowerment camp for girls middle school through high school. These particular girls are all clients of California Childrens' Services, though, which means they have some physical issues that require therapy. Often their differences set them apart from their peers and limit normal social interaction. Hence the "Empowerment" is more like catch up. They do crafts, learn about nutrition, their bodies etc. It is a safe place to ask questions they may not be able to ask in the normal social setting. It's not really appropriate for Maggie  but the social opportunity is great.   Of course Maggie  can't go alone, she has to have someone with her. That someone is me. Instead of Camp director, I am Maggies' aide. We go to camp together.

Don't be jealous.

Maggie didn't last long yesterday. She was grumpy and the activities were particularly inappropriate for her. She is the only one there in a wheelchair, and surprisingly there is very little accommodation  to include her. She started to cry about two hours in and we left. Hopefully today will be better.

The crying is not like Maggie at all, but we are all still exhausted from last week. That was a lot of change for Maggie to handle. She was a trooper, but I think it just completely wore her out. Couple that with my sleep deprivation hangover and you begin to see how miraculous it is that anything is getting accomplished this week.

The sleep deprivation hangover is pretty much gone now. Yesterday was the worst - it always hits me harder on day 2.. I stayed up all night Saturday because the nurse cancelled. I slept a bit Sunday morning, so I felt "OK" but just clueless about the time. The shortage catches up with me the NEXT day which was yesterday. It's not a tiredness but more of a spaciness. For example, when Maggie and I left camp we went to the pharmacy to pick up some meds. I sat at a stop sign (not a traffic light) for about 3 minutes waiting for it to give me "go" sign. A car going the other way stopped and then proceeded giving me a strange look. My first thought: what's your problem, buddy? Then it hit me. Oh. I guess I can go. Best not to drive in those situations.

Today is a new day and we have another night's sleep under our belts. We might just be the most energetic  girls at Camp today. I have caffeine to help get me there. Maggie has to rely on her sparkling personality.

 And her peppy aide.

Hey! Another Saturday Night

When my head hit the pillow on Friday night I let out a long and satisfied sigh. There is nothing like sleeping in your own bed after several strenuous days elsewhere. There was so much going on over the past few days that sleep was in short supply. The  nurses all showed up while we were in the East bay, which was great. But I would get into bed at night and stare out the window unable to settle down. That changed when I got home. Last night as soon as the nurse arrived for the night shift I went to bed and slept like a rock. The sound of the alarm at 7AM interrupted the first solid sleep I've had in a couple of weeks.  It was wonderful, but not enough. I was tired all day today and need a few more nights like Friday to feel back to normal.

Tonight is not one of those nights, though. There is nothing worse than getting a phone call at 10:30 from the night nurse advising that she is unable to come to work tonight. It's too late to get a replacement so mom is on duty. Even if she had called earlier so I could get a couple of hours of sleep first... but nooooo. She has to wait until the last minute. I did head upstairs and sleep for an hour while Steve handled Maggie,. but that was just a teaser. Right now it's nearly 1:00AM and I am on duty until 7 when Steve will come back down to relieve me.

That means I will be completely useless tomorrow and Monday. There always seems to be a delay until I can recover from staying up all night. I couldn't even do it in college, so this many years later, fergedddaboutit. When you add in the sleep deficit from earlier this week, it's clear that I won't be right for days. If you run into me and I don't greet you, please understand.

So it's Maggie and me tonight. I connected the tubing to the compressor and attached the oxygen. I set out the supplies I will need for the night and will get to her meds next. the sat monitor is hooked to Maggie' finger,  I am not using the feeding pump tonight but have opted to feed her manually. I find it easier than wondering if the automatic feeding is leaking.all over the bed.  The suction machine is poised and ready to do its thing all night long. Maggie, who became very riled up with excitement when she realized mom was on duty,  is finally falling asleep. I try to tell myself  her being up so late means she will sleep harder longer, but I now from experience that 's not necessarily the case.

Staying awake is not difficult because there is so much that needs to be done. I have suctioned her three times since I started typing this. Preparing and delivering the meds takes at least two hours.  In between I have to feed and change her and do the catheterizations.

If there is down time, which is unlikely I can continue to unload boxes to get us moved back in.  But I probably won't. The move back into the house will be pushed back another day or so. C'est la vie. Right now my goal is to make it until 7AM when I can return to bed. There will be another contented sigh when I hit the sack in the morning, but it may be inaudible as I will likely be asleep before the head makes contact with the pillow..

.

No rest for the weary

Any mom knows how to sleep with one ear open. It's instinctual. You develop this skill with newborns and it never really subsides - because you need it again in their teenage years. I have a very finely tuned ability at this because I have never been out of crisis mode and Maggie never developed normal sleep patterns. I am up and halfway down the stairs at the slightest sound. Steve sleeps, generally unaware of the sound, my concern or my departure.

Last night was different, though. At 2:30AM the nurse was yelling for help and I heard NOTHING. I was in the deepest possible sleep. Steve, said almost in his sleep, "Sally I think Etoy is yelling for help. I was out of bed like a flash, but the house was quiet. I called, no answer. I thought Steve must be dreaming, but I went down to investigate. The lights were on and clearly something had just gone down. Maggie was white as a sheet with the oxygen turned all the way up. Etoy was pumped up on adrenaline. I was confused.

Maggie got into some strange position and her trach tube popped out. Then she started freaking out and flailing around so Etoy couldn't get it back in. She was screaming for help and I was sleeping through it. It is very difficult to handle Maggie when she's freaking out like that, She arches and flails and turns blue. It is not fun. She flops around like a fish and I swear one day she will flip herself right out of that bed. When you add in the need to get the trach tube replaced, it becomes nearly impossible.  Etoy handled it. She didn't like it, but she did a great job.

We have a phone in Maggie's room that the nurses can use to  call upstairs, but 99 times out of 100 I hear her calling anyway. Last night was the 1 in 100 time I don't hear. Things were happening so fast she couldn't step away to call on the phone.  I turned the oxygen back down to its normal level and Maggie was OK. Everything was fine and I went back to bed, but I could not sleep.I've been awake since 2:30. It scared me that I didn't hear anything, and though I should have been there to assist, I am glad Etoy handled things on her own.

Maggie went to school this morning, no worse for the wear. Etoy is undoubtedly home in bed after a rough night. I am very tired but I am sitting here experiencing another maternal phenomenon: Guilt. .

Good (but I've had better) Friday

Good Friday started off with the phone ringing at 4AM. My husband was still trying to figure out how to answer it when I arrived downstairs. The nurses call from their cell phone to the house phone if they need help with Maggie.

Maggie has an uncanny ability to get herself into positions that scare everyone, except her. She is lying on her back and extends her neck so that the back of her head is touching her back. I think she's trying to get more air initially but then she kind of gets stuck. It's freaky looking, and though she starts out getting more air, I believe it get more difficult to breathe when she gets into this position. Getting her out of it requires intervention, then she does it again, etc etc. By the time I got down there she looked a little glassy eyed but she was fine. I repositioned her and she gave up the fight and went to sleep. I went back to bed. But sleep was not in the cards for me after that.

I put her on the bus and started my day. When Steve scraped his spoon on the bottom of the cereal bowl I went a little crazy. That noise is always a little creepy to me, but today I jumped out of my skin. I said, "OK, I think you're done" and took it away from him. I kind of knew then that I'd better head back to sleep. Of course  I drank a boatload of coffee so I wondered if sleep was possible.

It was.

I slept for 90 minutes until my phone buzzed. It was the nurse cancelling this afternoons' shift.

Lather. Rinse.  Repeat.

Sleepus Interruptus

I have been staring into space all morning. You have to love a Tuesday that starts with a broken trach at 4AM. Yeah!


I heard the nurse calling me but it took me a few minutes to realize it was real and not part of my dream. I hopped out of bed and headed for the stairs. After a couple of steps, I turned around to pick up my glasses. At that point, I was not sure what the problem was, but whatever it was, I was going to have to be able to see. Trying to focus my eyes at 4AM is difficult, especially considering I cannot see much without glasses even when wide awake.

Happily, when I arrived at her bed, Maggie was not in any distress. The nurse was standing at her side when it broke and kept it in place until I came down. We have an emergency kit and making the change is quick. I was back in bed in 15 minutes, but never really went back to sleep. Even though I knew Maggie was fine, it is difficult to settle back down once the adrenaline is pumping, and being roused out of a dead sleep to deal with a broken trach definitely gets the adrenaline pumping.

I just stayed in bed watching the clock and thinking about all the balls we have in the air. Some are just the everyday worries but others are more significant. For example, there is still no word on when they will do Maggie’s surgery. I talked to two of the three specialists involved and have an appointment with the surgeon next Wednesday. Originally I was worried that Maggie would miss her prom, but the prom is on Friday so that, obviously, is not an issue. Given the lack of urgency from the specialists, I am now going to push to wait another couple of weeks until school is out. Many kids yearn for summer vacation, but that is not a great time for Maggie. She LOVES going to school; it is really her entire social life. There is one week between the end of the academic school year and the beginning of summer school. Maggie will likely be out of commission more than one week, but it might as well encompass that week off.

The alarm rang at 6:30 and I got up and started the wild routine to get Maggie onto the bus. Since she left I have been "vegging out" in the front room. I am tired and worn out, but not sleepy, probably because of the three strong cups of coffee. But that will wear off so it is time for me to hop into the shower and carpe diem.

I have to hurry so I can still get in that nap this afternoon.

Wild Eyed Driving

Not a lot of sleep last night.

I went to bed at the normal time, around 11:00PM. Tim went out just as I was going to bed. His plan was to help his cousin with an experiment for class. They needed six males and were just a block away. He said he'd be home at 12:30. I left the hall light on and went to bed. At 2:30 I woke up and the light was still on. I know he's 19, but it still makes me nervous.

I texted him. He returned the text, they decided to go to Ocean Beach to watch the meteor shower. In all my escapades when I was young I never once used the meteor shower line. But it was actually true, I heard it on the news yesterday. Copernicus returned home shortly thereafter.

I went back to sleep only to have the phone ring at 4:30. It was the nurse from downstairs. Maggie pulled out her trach. I was downstairs in a flash. The nurse was holding the old one in place. It was amazing she could reach the phone from there. I went right to work and put in a new one and tied it. I went back to bed again, but sleep was elusive.

All I could think about was needing to stay awake to drive to Sacramento and back today. That's 200 miles driving alone. On very little sleep. And, unlike my scientific son, I am NOT 19.
That's why caffeine is my friend and constant companion. I will just wire up and hit the road.

I have to be back here before Maggie gets home from school. The guy is coming at 3:00 to repair or replace one of the the suction machines. Generally it's good news when something "doesn't suck."

Sleepless in SF

I didn't turn out the light until midnight last night. I was relaxed and comfortable for the first time in days. That cortisone shot really did the trick. About 80% of the pain was gone within a couple of hours. Apparently I can look forward to the remaining 20% disappearing in the next 24 hours. The relief will last for weeks and, coupled with the physical therapy, may take care of the problem all together. (fingers crossed)

It appears, however, that I have a side effect from that shot. Insomnia. This is very unusual for me. Because of the lack or predictability in meeting Maggie's needs, I have trained my self to sleep any time any where for any amount of time. A 10 minute power nap is not problem for me. I can lay down and fall asleep for as long as I need it or as long as possible, depending on the situation. Not this time, though.

I slept only 3 hours, woke up ready to face my day at 3AM. I lay there thinking about the million things I have to do to today and regretted the fact the few if any could be done in the middle of the night. I lay there for about 90 minutes and then came downstairs and started my day. The nurse was snoozing in the chair and Maggie was quietly sleeping. I let them be. I didn't want to freak her out.

After a bit I heard the feeding pump alarm go off and the nurse responded immediately. I really don't care that she snoozes, everything has alarms, including the SAT monitor. which measures heart rate and oxygen levels in the bloodstream. That monitor is essential and has a loud alarm if either changes to levels outside the set parameters.

Not sure how many of the million things will happen. Once I get Maggie off to school I may try to sleep some. I'm going to a play tonight that a friend wrote so I have to get some shut eye to avoid loud snores during the performance. That would be very difficult to explain. No, Bill, really it was GOOD. Don't mind me.

Have a good Friday!

Ahhh....

Ahhh. I slept for 12 hours. I stayed up all night Sunday doing the night shift for Maggie, but it was a last minute thing, so I didn't sleep in preparation. Yesterday morning I slept for only about 3 hours. It's too hard to sleep in the day; the phone rings, the doorbell rings, etc.

I thought I could catch a bit more in the afternoon, but it wasn't to be. I just hit the hay at 7PM. I woke up at 1:00 thinking I had really screwed myself and was now AWAKE for the day, but after patiently waiitng for about 45 minutes, I drifted back to dreamland. Hopefully this will put my system back to normal. We shall see.

One place I really notice sleep deprivation is driving. There were things that had to be done yesterday so I had to drive. I was sure that folks were drifting into my lane etc. After about the 5th time I thought, hmmmm, maybe it's me. I was slightly paranoid while driving, probably because it actually took concentration and my mind was like pudding.

You've been warned. If you know I haven't slept, stay away from me on the road. I'm easy to spot, I'm the one going 10mph in the slow lane giving everyone else dirty looks.

___________________________

Switching gears.....

Today is January 6. Two years ago today my dad passed away. I just want to take a moment to acknowledge him. He was a wonderful man, husband and father. He was the patriarch of this huge family in name and in action. His passing left a huge hole for all of us, but over the two years, the hole has filled with wonderful memories and stories, so the pain of losing him hurts a little less all the time. His legacy is in the happiness of his 7 children and their spouses, his 20 grandchildren (here are 14/20 of them) and his 3 great grand daughters.

My mom, who misses him most of all, has taken over as head of the family with class. She makes it look easy, but we all know it isn't.

She and I are going to lunch together to honor him. We should probably hit one of his old haunts. There are about 100 of them in the city.