Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

The nurses and my PT told me two days ago that I was turning a corner and beginning to heal. At that point I had little reason to believe them. I had a few days of being stuck in the same place—a cough that could not be reigned in, no sleeping at night because of the cough, exhausted all day because I wasn’t sleeping at night and so not able or desiring to do anything, incluing think, during the days. A bit of cough meds with codine has helped with the sleep although I am still not getting full night’s of sleep. The irony of this morning—I’m up typing before 6—is that it is in the early morning hours that sleep has seemed most productive. Julia usually needs to be woken up and moved along to catch The Ride and this week’s pick up times have been very early.  So, I have been dragging myself out of bed and with Ed’s help been getting her off. This morning, Saturday, I can sleep in and of course, I cannot seem to manage that.  

Yesterday, I was, for the first time, able to sit up for most of the day and take short walks around the house.  I am attached to oxygen with many feet of tubing trailing behind me. At least I have to hope and manage it to be trailing behind me.  I’ve tripped once over it—soft landing, thank goodness—and pulled it apart with a swift tug when I want to move further than I had allowed for free tubing. I can walk from my couch in the living room to the refridgerator at the far end of the kitchen. I cannot get to the back door just a few feet beyond the fridge or to the desk in my study—not that I have need of going out the back door or sitting at my desk in the study.  Neither of these limitations are intentional but they feel symbolic.  I am tethered.

I will be discharged when I the oxygen level in my blood is stable and above 92 without need for supplementation.  They had been weaning me from a high of 5 liters/minute to 1 liter over the days but last night, after a full day on 1 liter, my oxygen would not stabilize and I’ve been on 3 liters throughout the night. 

Christmas decorations are still up and I was able to start making neat bunches of some of the strings of lights yesterday after Ed took the strings down.  It was a good and easy activity for me —busy work that needed neither muscle or brains.  I’m asking him to bring up the storage tubs today to do more.  I will be very little by little. No overdoing allowed.  

Interesting what help is needed—I need a load of wash done.  I only have so many pj bottoms and comfortable sleep shirts.  Hopefully, I can get Julia to put a load in the washer and move it to the dryer later.  Both of these things—wash and decorations—require a trip downstairs that I cannot do.  I am tethered and dependent. 

A bit of very good news came in on Thursday.  Julia has been found to be a good fit for The Price Center, a day centre at the other end of Newton, our hometown. I believe that the program will fit her better than anything she’s tried before. She had a great interview/visit at the beginning of December. Talking to the director and staff, it seems that people are willing to work for families which has not been the case at the two programs that Julia has attended. Plus, DDS has finally arranged transportation to and from the center which means no more dependence on The Ride.  The Ride has been great for Julia getting to her current center and teaching her about traveling relatively alone; however, the schedule is erratic due to need.  Her morning bus is supposed to drop her at the center at 9. Sometimes she is scheduled to be picked up at 8:15 (just a bit early) and sometimes at 7:15 which is torture for all of us.  Her new bus will pick her up at 8:30 and also pick her up from the center at 2:30. I am hoping for consistency.

I have to admit that for the first time since she turned 22, almost 2 years to the day, I have some hope that she will reach some of her potential. 

I hope, I hope.  Julia is excited to go back to The Price Center.  After her day long interview, she was incredibly disappointed that she had to go back to Bay Cove the next day.  I take that as a very good sign.  

And thank you all for so many wishes and prayers and thoughtful comments on this most unexpected new year’s situation. To hear from so many old friends from so many times and places in my life is an incredible gift.  Your thoughts are like a calming balm.