Alan’s Army

Writing on Saturday about the crazy day that was Friday:

The day started with an email to the neuro-surgeon’s office in Philly telling them about the bizarre events with the doctor in Edison looking for a reason to keep Alan.  10 minutes after my email Ben called to discuss.  He said that they could think of no reason whatsoever why Alan would need a nuclear series done.  He also said that the adjustment to the shunt was a five minute procedure that could easily be done at the office and they were planning to do so on Tuesday.  He agreed that Alan should go home and get acclimated over the weekend rather than lay in the hospital accomplishing nothing for two days.  Ben said he would call the JFK doctor.

So, when we arrived at JFK, they were actually gearing up for him to leave.  A wheelchair, walker, and shower chair were delivered to his room and about 20 minutes after the guy left, Alan’s physical therapist came in and said “that’s not what I ordered - the wheelchair and tub seat are both wrong.” Long story short - it all came home with us and they will swap it on Saturday.

[Station Break - it’s 6:15, the coffee has finished brewing, its already 67 degrees out and the weather people say it will be over 90 degrees today so I’m going to move some mulch while it’s still cooler and everyone else is asleep.]

[1:30pm - OK about 4 of the 5 yards of much are moved, and its now 91 degrees in the shade and humid as all get out.  Time to eat something and sit in the AC for a while.]

So where were we?  Oh yeah, so Alan is all packed and we are ready to go and just waiting on paperwork from the nurses, and the Neuro-opthamologist shows up.  After a lot of hemming and hawing about uncertainties etc. he tells us that he is very concerned about the pressure on Alan’s optics.  He hopes that relieved pressure will help Alan’s sight, but is worried that continued or further pressure will cause permanent loss of sight.  He said he would prefer that Alan’s shunt be adjusted right away and not wait until Tuesday. 

[3:05pm - 93.9 degrees in the shade.  Rest of the mulch is moved.  Another 5 yards is ordered and on its way - oh joy!]

So we told him that the rehab doctor said they couldn’t do a shunt adjustment without a nuclear study and they couldn’t do that until Monday.  He rolled his eyes at that and said “well, OK, could your people in Philly do it?”  So we said “Let’s call them”  So I got Ben on the phone and the Neuro-Opthamologist explained his concern and before you could say “Alan, we are leaving but you can’t go home quite yet” we were on our way to Philly.

We got to Philly at about 2:50 and by 3:10 we were in with Ben who did a simple external,  purely mechanical, procedure with a magnetic disc to increase the flow on Alan’s shunt.  It took about 3 minutes and was so simple that I could easily duplicate it now days later - so why couldn’t JFK do this simple outpatient procedure without keeping him for three days and conducting a nuclear study?

In$urance money, pure and $imple.

So, after thanking Ben for taking care of Alan we took off for home and the pharmacy wars started.  JFK had given us a 3 sheet long med list with 19 items on it to pick up. 
Seven of them turned out to be prescriptions and twelve were hospital code for over the counter items.  I mean really, if you want us to pickup vitamins B-2 and B-6, simply say so.  I spent 1/2 an hour scouring the shelves for Riboflavin and Pyridoxine Hcl.  So, an hour later we finally left with the twelve items plus a blood pressure cuff, and due to their blatant racist favoritism at the pharmacy counter I had to go back at 9:30pm to get the seven prescriptions.  Thankfully I had the foresight to have them just fill for 10 days in case Philly decides to change any meds.  Without a prescription plan the current set of prescriptions are almost $23 a day.  We will type a list and take it to other pharmacies for comparative pricing after Tuesday.

So by about 7pm Friday night Alan was finally home and loving it.  As did we, the dog, cats, aunts, uncles, and cousins.  A pepperoni calzone and his own bed with Angel made Alan happy.

Saturday:

Well, it hit 95 degrees in the shade today.  Its bad enough that we “lost” the month of May somewhere, but now its suddenly August.  Alan reported sleeping much better in his own bed.  He walked next door to Aunt Nancy’s at 10am and she made him waffles and Bacon.  Apparently he also polished off their entire supply of milk.  After ravaging the Curtis village, Godzilla then walked over to his grandparent’s house and visited for a while on the porch.

Neighbor Jack Hunt stopped in with ideas on building the tub support and said hi to Alan.

Andy Beth came by and spent the afternoon visiting with Alan while Ginny cleaned the house that had been ignored for a month.  I shlepped 5 yards of mulch, and Amber did homework.  1/4 inch slabs of Pork Roll (thanks John!) off the grill covered with cheese on fresh hard rolls with ice cold slaw on the side made a yummy dinner.  We watched Jurassic Park as Alan figured the dinosaurs would be big enough on the screen to see. (Only so-so success.)

I came home at twilight after making a run to a different pharmacy for a pill sorter.  Alan gets Meds every 4 hours from 8am to Midnight so a weekly pre-sort seemed the way to go.

Alan had some tylenol today for a slight headache.  His BP was good so he didn’t need the second BP med.  He did a bunch of walking around the house with mostly verbal visual queues only and spent a lot of time outside on the patio.

Everyone went to bed exhausted.  Sorry I never finished the update.

Sunday:

5:50 AM - its already 73 out - 5 degrees hotter than this time yesterday.  Humidity is around 90 percent.  Time to start wheel barrowing mulch again.
8 AM - Woke up Alan and gave him his meds.  He said he slept well.

76.7 degrees already.  Need to do more mulch than start building a tub support with a step and 2×4 upright between the floor and ceiling.

Unless something profound occurs I will likely wait until after the Tuesday visits to the neuro-surgeon, oncologist, and radiation oncologist for the next update.

Thank you all for your continued prayers and support!

Love,

Big Dog