bad news/ good news
Good morning! Well the bad news is that Medicare in all its wisdom won't cover mom having a pump at home to administer her own i.v. of antibiotic.(never mind she's a retired nurse and it is more cost effective to not administer it at the Hutch) So, she and dad have to be at Hutch at 7 a.m every morning and then again at 7pm.
Of course, she's there most days anyway, but the fact that this is tagged on to the beginning and end of each day just stretches it out, doesn't it?
The good news is that they've been able to reduce the amount of time she has to be sitting there with the i.v. I'll explain:
On sat evening for her first i.v. of antibiotic, it was started up on a certain "speed" and she had a reaction to it called "red man" whereas her chest and neck and hairline turned red and she was getting hot/flushed and itchy. So, the i.v. was turned down to a slower speed as not to rush it into her body. So this speed resulted in the 2 hours.
As of yesterday however, her body has become used to the antibiotic and they made the wise decision of speeding up the drip
and it reduces the time by 50%. So instead of an i.v. twice a day for a total of about 5 hours, she
only has to do it for about 2 ish hours. Much improved!
So much for sleeping in!
Today is her day to have a lumbar puncture or what's known as a spinal tap.
Much love to all of you, I know margie feels your thoughts and prayers and well wishes-
Kathleen
Dear Mom, "Hi"! Do you have some good things to read during your hours of sitting with the I.V.? Where are you getting your mail these days? Do you have an address that comes directly to you in Seattle? How about the phone situation while you are there? Please let us know. My dad and Barbara came by for a visit on their way out of the desert yesterday. They hadn't seen the house since mid-January. The remodel is coming along nicely now. All the projects that are left show as big improvements. You guys saw it in such a run-down state last year that you wouldn't even recognize it today! We'll try to send you some pictures soon. We hope you are holding up well to your spinal tap (YIKES!). You look really good in the pictures that Kathleen posted. Please tell her "thank you" for doing such a splendid job of keeping us all up to date .... and with visuals too! It's so reassuring to know on a daily basis just how it is all going. Speaking of that, how long must you be on the antibiotic I.V. drip? Important Health Tip: Get someone to go to the health food store for you to get the following: Nature's Life (brand) Blueberry Pro-96 Acidophilus Probiotic. It's the tastiest one I know of. It should be used every day just for general purposes for good health. But when you are doing antibiotics you MUST, MUST, MUST do it(or something similar) and in greater quantities. Take a couple of "swigs" right out of the bottle morning and night. Those antibiotics are murder on your good "flora" (i.e. intestinal bacteria) and you've got to replenish them. Are you guys still doing the flax? Did you order more before you went over to Seattle? If you didn't get a chance, just let me know and I'll get some coming your way. If only Dad is using it, you really should consider joining him. Not to be preachy, but it is super good for you too. Did you ever ask them at the Hutch about a referal for you to the naturopath that they use to consult with transplant patients? I think it is an excellent idea to have someone who is really tuned into nutrition and supplements to advise you during all of this. Your body is going to be (and has already been) under a tremendous load and stress. You need all of the health support you can get to help carry you through. The fact that they are in touch with the Hutch means that they won't steer you toward any substance that will interfere with your treatment plan. You're probably a bit overwelmed presently, but try to get the contact information and schedule an appointment as soon as you feel up to it. That is one thing on the "to do" list that should happen as soon as you can swing it. I know you try to take good care of yourself, but what you have been through and what you are about to undergo are extraordinary. You want to be in top form nutrition-wise. There may be some great things that you can do for yourself that you are not aware of yet. Eddie, Dashiell and Sully all say "Hi"! We all send you and Dad and Cathy lots of love. We miss your bright smile! Love, Susie
ReplyDelete"When The Ship Comes In"
ReplyDeleteOh the time will come up
When the winds will stop
And the breeze will cease to be breathin'
Like the stillness in the wind
'Fore the hurricane begins
The hours when the ship comes ind.
And the seas will split
And the ship will hit
And the sands on the shoreline will be shaking
Then the tide will sound
And the wind will pound
And the morning will be breaking.
Oh the fishes will laugh
As they swim out of the path
And the seagulls they'll be smiling
And the rocks on the sand
Will proudly stand
The hour that the ship comes in.
And the words that are used
For to get the ship confused
Will not be understood as they're spoken
For the chains of the sea
Will have busted in the night
And will be buried at the bottom of the ocean.
A song will lift
As the mainsail shifts
And the boat drifts on to the shoreline
And the sun will respect
Every face on the deck
The hour that the ship comes in.
Then the sands will roll
Out a carpet of gold
For your weary toes to be a-touchin'
And the ship's wise men
Will remind you once again
That the whole wide world is watchin'.
Oh the foes will rise
With the sleep in their eyes
And they'll jerk from their beds and think they're dreamin'
But they'll pinch themselves and squeal
And know that it's for real
The hour that the ship comes in.
Then they'll raise their hands
Sayin' we'll meet all your demands
But we'll shout from the bow your days are numbered
And like Pharaoh's tribe
They'll be drownded in the tide
And like Goliath, they'll be conquered.
Hey Mom et.al. These are lyrics to a not well known Bob Dylan song. I like it particularly. It is sung in a rousing, vanquishing way, and it reminds me of time at sea. I am thinking that the last two stanzas about the foes days being numbered is not a little like the son of a bitch loookeeemeeeeeah which you are about to get rid of. I am sorry to say that my wife finally forced me to set my ass down and look at your blog. (whatever in hell that means) The sorry part being I didnt do it sooner. But man oh man, I am impressed Kathleen. good idea, and executed on time and inside budget. As usual. On this subject, I must give credit to our in house computer whiz, Dashiell, without whose help, the cutting and pasting of the aforementioned lyrics would not have been possible. At all. Trust me. Maybe we can even post some pictures too. Love Eddie Susie the incredible Dashiell Sullivan Greetings from the high desert.
ReplyDeleteThis is by the way of a post script. Dad, thank you very much for the mailing. Recieved it. Enjoyed it. Eddie.
ReplyDeletehey eddie and susie, email me your email address
ReplyDeletein the desert:
artgirl62@earthlink.net
p.s. blog:
it's from "weblog" ( a log on the web)
just say weblog really fast about 10 times.
love, Kathleen
p.p.s the antibiotics are for 2 weeks