Saturday

A relatively uneventful day.

Mom had a new vascular access line put in, so that it will be easy to give her any IV medications that she may need at the Mather. That pretty much wiped her out, and she didn’t respond much the rest of the afternoon.

We are expecting the transfer to be on Tuesday sometime.  An ambulance will bring her from her room in the hospital to her new home on the second floor of the Mather.  Her new digs east out over the southern part of the Mather gardens, although there isn’t an easy view of the flower boxes.  Also out of the window, then new gardens across the street can be seen.

Mom will be comfortable, and all of her friends will be able to come and see her easily.  Maybe even Cosmo can come for a visit!  Of course, it will be hard to know whether she understands either the hub-bub around her, or her condition.  I actually hope that she doesn’t understand what her situation is; she would not be happy about that.

It will also be an adjustment for all of those who come to visit her.  I am sure that the wonderful staff attending to her will try and put her visitors at ease as well.

Friday, 6:30

Once again, Mom had a very quiet night.  She seems a little more aware of little things that irritate her, like her trach and feeding tube, and she tries to play with them. The oxygen delivery has been changed to what is called a trach collar, which is like a teacup over the opening of her trach.  This delivers a rich oxygen and humidity mixture that keeps her secretions loose.  She is able to often cough up some of the secretions without having to be suctioned as often.

We are moving in the direction of her being transfered to the Mather in the Skilled Nursing Unit on 2 early next week. There are many preparations that need to occur before then, and she still needs more medical “tuning up” at Rush first. I think that everyone is excited that she will be “back at home” where it is easier for most of her friends to see her, and where the wonderful Mather staff will attend to her.  She will require very extensive supportive care, and the arrrangements for that are in progress.

Thursday morning

Very quiet night.  Mom is resting well, and occasionally opening her eyes and looking around.  She has figured out how to detach the “T-piece” from the oxygen source from her trach tube. Her fluids seem more in balance, and the pudgy feet and left hand are now mostly back to normal.

Today the head of nursing at the Mather is going to come down and see her, and evaluate what further “tuning” she may need before they can take care of her.

Wednesday

On the medical front: Mom is very stable.  She is opening her eyes more today, although it isn’t possible to tell if she is perceiving what is out here in the world.  When someone speaks to her who she recognizes, she seems to get a look of awareness. Pam was her today reading Dr. Seuss to her (!) and thought that she detected a smile.  Mom has a right facial palsy that is subtle, and her smile would be a bit lopsided.

I went today to the Mather and talked to the folks in the second floor skilled nursing unit.  Like everyone at the Mather, they are wonderful, and would love to have Mom come back “home”. We are working to make arrangements for a possible transfer next week, if everything progresses.

Tuesday, 6:30am

Mom is opening her eyes when stimulated, including when she hears voices.  I was able to get her to raise her left arm by asking her to, although there is little else that she can actually move very demonstrably.  I wish I could tell whether she knows who or what she is looking at when she opens her eyes.  We’ll just have to wait a while to find that out, I guess.

Most of her vital signs are normal now.  They have slightly lowered the flow of oxygen, and she still maintains high blood oxygen levels.  They continue to use medicine to induce diuresis, so that she loses the over-abundence of fluid she has built up; she is down about four liters since Saturday night, which is almost ten pounds.

Monday, noon

Judy (Kornblatt) and I met with the chief of neurosurgery, who operated on Mom, and also the neurology critical care specialist who took care of her for the past week.  We went over the outcome scenarios, which are not functionally very encouraging, as well as options that we have for short and long term therapy.

The long term function is very hard to predict, but it is unlikely that Mom will walk or speak.  She is also unlikely to understand very effectively what is said to her. Even getting to that level may be a lot of hard work on her part.

On the other hand, her improvement has not reached a plateau, and in fact when we came back into the room, her eyes were open.  Perhaps she even responded to some of our exhortations, such as “raise your hand”.

The doctors and nurses will continue “tuning her up”, while we explore the possible choices of where she may go next.

Monday 6:30am

Mom had a quiet night. She wakes up a little more easily when stimulated, although we don’t know what she is really perceiving when she has her eyes open.

Her blood pressure continues to be erratic, and they are using more medication to try to find the right balance.  As she loses fluid from the last several weeks of IV’s it may get easier to keep her pressure down, although that also makes it too low from time to time.

Sunday morning

Still very stable. She continues to breathe on her own with high flow oxygen. Fever is down a bit. she is very bloated with fluid, so she looks a little like a parade float.

The plan for the day is to try to lower the oxygen flow, use some drugs to get some of the fluid off, and start her on some blood pressure medication, as her pressure has been very labile.

Saturday morning

Very stable right now.  Remarkably, Mom has continued to breathe completely on her own, without assistance, albeit with very high oxygen flow to her trach. She didn’t get too tired to be able to keep her blood oxygen saturation up.

She hasn’t had any neurological changes, positive or negative. She opens her eyes when she is irritated by someone or something, like being repositioned or having her mouth swabbed.

Her blood count has fallen a couple of times during the last ten days, requiring two blood transfusions, including yesterday morning.  We will need to find out why that is happening.

Friday

Tasha had surgery today to create a shunt between the space in the brain where cerebral spinal fluid accumulates, and her abdomen.  She was not absorbing the fluid as fast as it was being made, and so there was a long-term danger that the pressure in her brain would rise.  This shunt, if it stays open and functioning, will obviate that problem.

After surgery they had some trouble getting her to breathe correctly, which probably was a result of the anesthetic not having worn off yet.  That all went away after about an hour. They have connected her to a device that blows oxygen past her trach opening, and so she is not being mechanically assisted at this moment, although she will get tired and then they’ll put her back on the ventilator.  This can sometimes be a long process, with steps forward and backward.

There is also the indication that she may have an infection brewing where her central IV line was placed over 10 days ago, so they have pulled that line and put in two small IVs.  The skill of the nurses in putting those needles in Mom’s very swollen hands was remarkable.

So, all of these events today have been relatively positive.  The problem that we have to address is that she has not really had any improvement in the level of awareness or response to the people in her surroundings.