Day +9 – Down the Rabbit Hole

Wednesday July 25, 2012
Quail Run Lot 15
Moffitt Cancer Center Room 3715

 

It’s a routine running morning for me.  It’s 76 degrees when I start.  I’m amazed that I can run in this temperature.  When I return the maintenance folks are at full volume noise - mowing the grass and using the leaf blower on the spanish moss.  Glad I’m back from running by the time they start.  Both of those machines are among the most polluting things humans use. 

I go inside today to stretch, lift, clean up, change clothing and get some breakfast. 

I walk up to mail something for David and check our mailbox but the only things there are the “occupant” circulars for local businesses.  I guess you can’t avoid junk mail even at a temporary address.

 

 

 

Then it’s up on the roof which is dry this morning and only the smaller slide has water on it.  Good deal!   Nice views from here.  Supposedly no rain today or tomorrow so I won’t get to be high up in my world again for a while.   I actually like it a lot up here.  I feel up and away from all the clutter and noise of the world, in the tree tops sort of.
Too bad I can’t bring my anti gravity chair up here.  That would be great!  

 

I reluctantly come down, put the broom away and make myself some lunch and dinner to take in to the hospital.   I’ve been turning the radio on at 8am every morning now for the traffic report after my slow crawl home of a couple of days ago.   This morning they say the traffic is backed up for 15 miles on I 75 toward Moffitt from the exit where I get on here near the park.  I’m very glad I’m not leaving at that time but instead late enough to miss the morning problems. 

When I get to the on ramp, I make sure to check and see if the traffic is moving.  Otherwise I’ll take the back roads.  It can’t take longer than a stalled freeway.   But luckily everything is cleared up and it takes me the usual 30 minutes.  The “free” parking valet, whom when I pick up the keys in the evening everyone seems to tip, takes the car.  My little red cart can practically find its own way down the main floor hallway, up the elevator and down another hallway to the double doors that mark the 3rd floor transplant suite.   Once inside I stop as directed to wash my hands.

When I get to David’s room, I find the Physical Therapist is just leaving.  She tells me he has passed all his balance tests.  He doesn’t even smile.  He’s very tired.  He says everyone has been doing everything this morning.  His breakfast came and he ate it and was so tired he took a nap until the rounds team came.  Apparently, I just missed them.

I see his numbers on the board.  The White Blood Cells are moving very slowly up,  his hemoglobin is holding steady but the platelets are down again.  They are at 14 today, the magic number is 10 so it looks like the transfusion will be tomorrow.

 

 

 

He’s very tired.  When he lays back in his chair, we talk briefly about what happened on rounds.  He says the doctor on rounds this week, Dr. Perez, told him he would probably have another two days of feeling like this and then be ready for discharge on Saturday.  Given how he seems now that surprises me.   I wonder if it’s 2 weeks and out regardless.  Later in the day I email his doctor about this.  She assures me that he will be discharged only if he is feeling well enough.

 

Before the rounds team came, his nurse put him on another saline drip and the physical therapist took him through her routine while he was hooked up.  No wonder he’s so tired.  He falls asleep in his chair hooked up to the IV drip.   I put the sign out and go out in the hallway to try to return the  call of the social worker about temporary housing after he’s released.  I don’t want him to be half an hour away from the hospital if this is close to the condition he will be in.

 

I come back several times and look in through the hall window to see he is still sleeping.  I don’t want to open the door and awaken him.  After about an hour I look in and see him stirring so I go in quietly and he opens his eyes.   Apparently while I was gone a nurse came in and gave him today’s neupogen shot.  He will continue to get one shot per day until his platelet counts are up to 15 (1500).  I wonder if he will be doing this after discharge as an outpatient.

 

His IV drip finishes, its alarm goes off and they unhook him.  His technician comes to do his vital signs.  His temperature is slightly elevated at 99.2.  He lays down on his bed to wait for his nurse to flush his lines with Heparin.  He just looks so tired.

 

Lunch arrives.  He sits on the edge of the bed and eats his spaghetti and some of his beans.  As you can see, he isn’t very enthusiastic about it all but says he can still taste the spaghetti.

While he’s eating, the cheerful woman named Patsy who keeps his room spick and span comes in to do her job in support of his health.  She cleans every thing every day and always is smiling and very pleasant.
We sure appreciate her and what she does.

 

He lays back on his bed again to rest.  His nurse finally comes with the Heparin. We go out for a walk.  While we are walking he asks me to bring him a hat.  I ask if his hair has started to fall out.  He replies that he’s found hairs on his pillow and that he’d rather have the hat here too soon than need it and not have it. 

He’s had hairs on his pillow ever since I’ve lived with him so this doesn’t sound like breaking news. 
I say “do you think your bald head is going to get colder when what’s left of your hair falls out?” 
He answers “that part of my head isn’t used to being out in the air.”   HA! 
Four laps is all he can do right now.  When we return to the room, he sleeps again. 

He seems to feel a tad better when he awakens this time.  He eats his fresh fruit cup from lunch then makes a call to the Chronic Disease fund in response to some mail they have sent him and looks through the rest of the business mail and makes notes.

 

 

He eats some of his salad, then pushes his chair back to rest and says “I’m going to take another walk after they do my vitals; make sure I’m still alive.” Now that’s definitely a joke.  Pretty amazing given how he feels.  That’s attitude for you!  He says something about stoic before he falls asleep. Sounds like he doesn’t like that description.

My phone rings and then immediately his room phone rings at the same time.  My call is from Janice the social worker. I hand him his phone and it is Kate the case worker.  Both want to know where we want to get his prescriptions filled when he’s discharged.  

Given the call from Janice this morning about discharge housing and these two calls now, it is clear that the wheels have been set in motion for him to leave on Saturday.  I’m thinking more strongly that this is a two week max policy and if you have a problem after that, they “readmit” you.   We’ve been told about people who are readmitted for a day or two due to an infection or other problem.   They are given rooms in the “old unit”.  The new lovely rooms are reserved for the current transplant patients.   We’re hoping once he’s out, he’s out for good.  Other than daily return visits to the outpatient clinic for vitals signs, dressing checks, any necessary infusions and who knows what else.

After the phone conversations, before he falls asleep again, I check his hair.  Seems pretty tight there to me.  But he reminds me to bring him a hat.  So I write it on my list.

He has said that he will go out for that second walk after his technician Fadila from Bosnia comes to do his vital signs.  He sleeps until she comes almost exactly at 4:00.  Vital signs are taken at 8am, 4pm, 8pm and 4am. This early morning time is when they draw the blood for his counts so the lab can process them before doctors come on rounds.   This time his  temperature is down.  That’s good.   They even have a little thing that goes on his index finger to check the oxygen in his blood.  100%.  Also good.

His PA Mark comes in for the last time today to see if there are any questions.  He reiterates that he thinks David will be ready for discharge on Saturday and that if he needs more saline infusions, he will get them as an outpatient which will mean 3 hours or so hooked up in a chair in the outpatient clinic.  That seems to settle it especially when Mark tell us that David is the healthiest patient on the floor at this time.   There are 18 rooms in this unit, half of them myeloma patients, so given how David feels at this point, those folks must be really sick folks. 

We go out for the walk and see Carol who is in a room a few doors down from David.  He met her earlier on one of his solo walks.  She has leukemia and amyeloidosis.  She was walking solo when he met her but both today and yesterday one of the Physical Therapists was walking with her.  We check her door.  No stars.  Hmmmmm.  

We do  another 4 laps. While we are walking he says he will walk two more times and do 3 laps each.  That he feels he can do that is a good sign.  He’s perking up a bit.   He comes back and sits in his chair rather than naps.  I can see that the walking and eating are actually helping him feel better.   But of course you have to have at least enough energy to get out and walk in the first place before it can have its positive effects.

I look over and see that he is back to recording everything that is happening.  The statistician in him returns.  That’s a very good sign. 

 

 

While he’s working away, I sit down to check my email and find that MZ, one of the blog’s followers, with whom I share a LOVE for beagles has sent us a picture of Duke.  He’s the royalty in her home.  He definitely brings a smile to both of our faces.  Isn’t he the best.  I’d say he’s “the cat’s meow” but he might not like that and I wouldn’t want to offend him.  Thanks MZ!  Thanks Duke!!

 

After about 20 minutes of writing activity he says his stomach is bothering him and he reclines the chair and takes another nap.  He has about half an hour before they show up with his dinner.  I had thought I’d eat my dinner before they come but I don’t want to chance waking him by going out of the room.

As he eats his dinner, he says the chicken is way too dry but the rice and plantains are good.  He keeps the fresh fruit for later and sends the mainly iceberg lettuce with carrot shred back.  When we finish eating, he lies back and I read for about half an hour.  We set out for walk #3 and of course his nurse shows up and wants to change his dressing. 

It’s almost become a joke between us how often somebody wants him back in his room just as he starts out to walk after he’s just been in the room for hours.

Changing the dressing on the central line is done every 7 days and is an involved process of removing one sterile dressing, cleaning the area, keeping all foreign everything away from it and reapplying the dressing.  As she gets close to exposing the entry of the central line into his chest, his nurse Catherine tells us there can be no talking while the spot is exposed.

 

It takes her half an hour to do all this.  David says none of it hurts.  She is very careful during it all even removing the original bandage which is stuck to his skin of course.

We watch the first 15 minutes of Colbert and then go for the third walk. When we come back instead of leaving, I stay later to help him clean up and get into his pajamas.  He hasn’t done the spirometer today.  He is able to get to 2000 multiple times but he is working very hard at it and afterwards he feels worse for all the deep breathing.  It is too many things all in a row with not enough resting.  They are piling up on him at the end of the day.

His night technician comes to do his vital signs and his blood pressure is 156 over I forget what.  I reiterate again that I think the spirometer lung  exercise must be done in the morning but spending 3 hours hooked up to the infusion machine puts a real cramp in his mornings.  His blood pressure drops and at 8:30 he crawls into bed with the covers over him for a nap.  He still needs to rinse his mouth with saline, finish his ginger ale and the bottle of water that is open.  He says he’s going to take another walk.   Perhaps he will feel somewhat restored after resting.  But the only thing he really must  do is the mouth rinse.  His sleeping last night was no better than a series of naps again so I know he’ll be up and down all night.

I close the window blinds and turn out the lights.  There is nothing more I can do.  I drive home in the dark tonight but luckily there isn’t a back up on I-75.  I do pass a flashing sign saying “Lane Closures begin again July 26th”.   SIGH, that’s tomorrow.   He’s definitely down the rabbit hole and it may take him a couple more days to get more than glimpses of the light of day again.