Wednesday, May 30, 2012

Certainty and Uncertainty

Frick and Frack
Ying and Yang
Black and White
Peace and War
Love and Hate
Democrat and Republican
Christian and Atheist
Health and Illness
Light and Dark
Clean and Dirty
Dark and Light
Dry and Wet
Sweet and Sour
Life and Death
Happiness and Despair
Pass and Fail
Hot and Cold
Pregnant and Not
Reap and Sow


We live with them all, they co-exist in our world.  The part that makes me so freaked out is how fast one can overcome the other.  In one moment, a flash, it can forever change.  What ever "it" might be.

WE have all had those moments.  We practice as small children to learn how to handle the switching.  

Sometime we are just caught in so many changes at one time that it is hard to keep up.  To catch our breath to adjust and be able to move forward to brace for the next event.

It is sometimes so easy to get caught up in all the drama surrounding the switch that we fight it.  We fight the changes instead of embracing them and seeing what the landscape will be when the trees are trimmed and the plants are dug up and re-planted somewhere else.

I know what it is like to fight.  To try and regain the equilibrium once a shift in reality has happened. 

As I sit here, 1/3 the way through the Transplant, I can feel that things are reaching a sort of equilibrium.  There is a huge jar of "Uncertainly" on my counter but I am beginning to embrace it and move the rest of the jars around it.   I can choose to ignore it and eat dinner by it.  I can resolve every day to address it head on but then often times are spirited away to work on less scary projects such as Health and Heat and Light. 

This is what I know:  Uncertainty is the only Certainty.

Tuesday, May 29, 2012

Plants....



They make me focus in two ways.  Plants and trees contribute to your lives.  They give us a reason to dig in the dirt.  Dirt digging helps me to examine the medium with all of its components and ingredients.  I never really understood dirt until I began to see what I could make grow out of it.  

My Grandfathers were master gardeners.   They prided themselves on what they could make come out of the dirt.  The passed the love on to my parents who passed it on to me.   

It is not something that was passed on more by osmosis than by real instruction.  The teaching did not come from any formal instruction.  It came from observation and lots of complaining.

"But I don't want to spread manure and straw on the ground."

" I don't want to weed and thin the carrots."

" I don't want to cut the potatoes up in to quarters so the cuts can cure." 

"Do I have to put clothspins on all of the cauliflower heads?"

"Peat moss, dug into all the beds AND all the old buds taken off the petunias!"

I never thought of these as teaching moments but in hindsight they most certainly were.  When I arrived at Dietrich, Idaho for my first teaching job, I began the process of adding peat moss and finding other sorts of things to make the dirt better.  Fall planting, spring planting, bud picking, cauliflower head pinning. Tree planting, bulb planting, garden bed making, tomato staking, potato digging. 

This spring I was lucking enough to be able to do lots of digging and planting and weeding in my garden.  Planting, pruning, plucking and moving plants around.  As I dig, and augment the soil, change the old dirt and adding new things to make the old dirt better, it has given me a chance to shift my focus from the past winter to what is going on to the future.  The new flowers and plants are beginning to grow.   The old reliable ones are beginning to do their job. 

There is something about the work, the repetitive nature of the planting and weeding.  The transformation that is imperceptible at first but when it finally happens and the growth starts, the magic happens and nature takes over.

Part of my work in the dirt has given me some time to reflect on what has happened during our last few months.  A bit of this, a bit of that and some time and a new immune system is planted and growing.  It just takes time. Time to let the changes happen.  Time to absorb the necessary strength from the soil.  Time.   Time.  Time.....


Tonight I will soak some of the famous Scarlett Runner Beans.   They will go in the tomorrow. We shall see when they make their first appearence.  

  

Maybe, Maybe, Maybe .......

The alarms still ring several times a day. 

7:30 am
8:00 am
9:30 am
12:00 noon

On and on, the last one goes about 10:30 p.m.  But it is better.   Drugs are going away.  Icky things and not so icky things.  Slowly the med list is getting shorter.  The hair is getting longer.  The cheeks are very round but are beginning to shrink.  The round tummy is getting smaller.  The appointments are still very early in the A.M. but they are fewer.

Meb walked around the block with the dogs.  She was able to go to Costco and we only came home with 30 individual back of chips. 

She has no more appointments this week. Her upset stomach that put a huge damper on a movie and some week-end events.  Let us just say that she will not be eating Bone Marrow Approved sushi will be consumed in the near future.  Her cold is leaving.  Maybe we have turned a corner.

I keep thinking I can make some plans but I hate to disappoint anyone.  I hate to say that we are going to do something knowing how fast things can go south.  ( Why do things go South and not North?)  I guess.  So we have no plans.

Maybe we will make a plan to make a plan in the morrow. 

If things don't go Northeast.

Saturday, May 26, 2012

There are things I just cann't bring myself to do....

I cannot bring myself to spend $700+ on a perfect fountain when there is a pump and a bowl and water bubbling in the back.

I cannot vote Republican.

I cannot plan more than a week ahead.

I cannot do laundry.

I cannot seem to get all the plants in the ground.

I cannot seem to be able to convince the dogs we should sleep past 6:30 a.m., especially on Saturday and Sunday.  

I cannot seem to get over the fear that all the "other shoes" have not dropped.

I cannot seem to bring myself to go on the floor at Seattle Children's to see who is there.  

There are so many things I cannot do.


So I will instead, focus on what I can do:

I can plant several kinds of sunflowers.

I can arrange the new bushes for the bed under the Palm Tree.

I can enjoy my nice clean house.

I can enjoy the people that come over for dinner this evening.

I can wait until sunset for the new glowie things in my garden to turn on. 

I can enjoy today take a few minutes for deep breathing, read the New York Times, have coffee with friends and be amazed at how lucky we are at this moment in time.  The rest will just have to wait. 

Now which list does cleaning out the produce draw belong?

Friday, May 25, 2012

We live an Opposite Life

Being contray has been one of my best virtues.  It is necessary right now. Everyone will be at the Seattle Center this week-end.  We won't.  We will miss Folk Life and the opening of King Tut. 

We will be home defrosting the Freezer. Some early morning during a mid-week, we will visit King Tut.  The Center will be quiet, there will be very few people and we will participate.

We have not checked out of life, we are just on a parallel path.  It is sometimes lonely.  There is something about the energy of huge crowd.  Something about being with other people that are interested in the event. 

Granted, I can go to a few things and have tried to do so but in someways it does not seem fair.  It will be better as the drugs go away, the cold goes away, the world tilts back on it's access.

Until then we will have dinner at busy places during off hours. We will go to the Art Museum, the library and to places of less current popularity. We will sneak into movies when others are working or getting ready for work. I will garden.  Meb will begin to reconnect to people in her lives.  

We are on a parallel path but we are eyeing the road more  traveled.

Wednesday, May 23, 2012

I am finally going to start using my Datebook.

I have in my possession a lovely Purgatory Press almost one of a kind datebook.  I tracked it down after hearing a great story on NPR really early before all this transplant stuff started.  It arrived within days of the New Year and I have loyally carried around with me.  It has been in a variety of bags and purses and paper Starbuck's bags.  I has been with me during this time. 

I have made a few entries and put a few things in it. I counted out the 100 days.  I have not really used it.  We have been tied to the "SCCA Patient Itinerary"  and the book deserves to have fineink from fine fountain pens scribble on the pages. I am still a pencil stort of gal.  I have not been ready to begin to plan  very far ahead. Like Maggie Smith said in The Best Exotic Marigold Hotel,  "I don't plan that far ahead, I don't even buy green bananas."


I am going to experiment with buying green bananas.  I even allowed myself to put a concert in my date book.   On June 16, 2012, I am going to go to see John Folgerty.   There, See I can buy green bananas and wait three weeks for a concert. 

We measure progress a bit at a time, a day at a time.  A blood draw at a time, a taper at a time, a morning at a time, a blood sugar at a time. 

Tuesday, May 22, 2012

If it is not one thing......

So I have been thinking we could explore some time away from the hospital.  Maybe we could figure out some time that was not infringed on by a clinic appointment, a dressing change, drugs that need to be picked up, maybe we could just go, and be done for a week.

Silly Silly Sally.  We went to clinic yesterday and it was looking grand.  The line let loose of the blood required for labs.  The weird bumps were just dry skin.  The cold will just be here for a while, Ellie Mae is making attempts and it has not become pneumonia so every on is thrilled.  The "bleeding" happened in record time.  So we walked out and had until Friday ahead of us. 

I decided that since I had been so so worried about the line and the everything I would just take the day and do only the things I wanted to do.

That last 2.7 hours.  When will I learn not to answer the phone.  When...... her levels are not right.

Back today or tomorrow for a bag of IVIG. Her immunoglogbluin is way low so she needs an infusion.  Her tacrolimus is high and her head re-affirmed that this morning.  

 See even Lucy is miffed.
I guess I have to reach back into my memories of her first few weeks.  Her new immune system is must shy of four months old and it is not ready to sleep all night.  It is impossible to put the baby to bed and watch a whole movie or drink a hot cup of coffee.  I better go take a shower while the baby is sleeping and do a load of laundry. 

Saturday, May 19, 2012

Bird Baths Need Attention Too

We have a bird bath in the front that has been a fixture for many years.  It took them a while to find it and then to use it.  Many a bird, dog, small child find pleasure.  Most moms are horrified.  No matter what I do, it never is that crystal clean for more than a few minutes.  

I had been working on changing out hoses (thanks Tucker for grabbing the hose and pretending it is an animal that must first be chomped and then shaken) and it has not been raining.  For the first time in a long time, it was dry.  Bone Dry.  Anything in the bowl was desiccated. 

I finally filled it today.  Within moments a nanny crow came.  I am sure his/her job was to pick up a load of suet for the babies but he stopped, looked at the birdbath and dove in with gusto.  He bathed and splashed and sat in the sun for a bit.  She went in twice, then a third time.  She sat on the back of the garden bench and shook herself dry, grabbed a load of suet and went back to her task.

It was a good reminder that even the caregivers should take a moment for a bit of self care.  Also a good reminder to make sure the bird bath never goes dry. Such a simple thing can give others so much pleasure. 

Thursday, May 17, 2012

Convoluted Paths

1. Decision was made that it is high time for me to buy a real back yard fountain. ( I have tried to take other non-fountain stuff for years and have failed in so many ways.)

2. Go to the place that used to Lucca.

3. Find lots and lots of really great fountains.

4. Determine most would require that I annex my neighbors yards.

5. Decide we need to eat.  Decide the best place for a salad is Cheese Cake  Factory.  Easy decision.  Go to Bellvue to continue the quest or pay $20.00 to park down town.  No we can't take public transportation Mayor.

6. Cross to Bellevue on my new private seldom used 520 bridge because somehow I have a Good to Go Pass with 60.00 on it.  Don't ask.


7.  Have great lunch.  Realize one must have an SUV in order to have leftovers transported.

8.  Find a place that should have fountains.  Travel east to Redmond.  (I know, I know.)Discover in Redmond fountains are really waterfalls and trout streams. 

9.  Wander through water world and find tank after tank of Koi.

10.  Bond with Gracie.  8 years old and 30+ pounds.

11. Realize it would be cheaper to move to a place with a stream.

12.  Decide we should visit Cousin Jack's UPS store. 

13. Wonder around for a while with purpose.  When we find the old growth forest we might be lost.

14.  Arrive at great shopping center.  It has two, count them two Starbucks. Spend time with Cousin Jack.  He won't hire me.  I think it is because I am not a Republican but I love him anyway and the store is great and I might even go again.  

15.  Return home. Cousin Jack told us how to get home.  He failed to mention at some point we would need to decide between Avondale road and place.  We took the road that appeared to most traveled.  Remebered why we don't like to go to the Dark Side ( Over the bridge and through the woods.)

Still no Fountain.  (Still don't know how to remove extra pictures.)

Wednesday, May 16, 2012

Sunny Wednesdays

Day three or four of sun.  It reminds us that the seasons are changing even though they are doing so slowly.  Another way to monitor our progress.  Each day is a bit better.  Each day I feel like we are coming out of the fog and beginning to re-engage with the world.

It happens a bit at a time.  No big gestures.  No big changes, when I try to do that something inevitably happens to remind me that both of us are in the process of healing and re-adjusting.

We have been out a bit over 6 or so weeks.  Maybe it takes a day for every day we are in-patient. Maybe it is two.  It hard to determine progress for me.  It is hard to know.  There is no blood test or scan that can be done.  It seems that my world comes back together in other ways.  Remembering to dry the laundry, being able to answer some e-mails, paying attention to an empty bird feeder, putting a chicken in the oven. Thank God lots of wonderful people filled my freezer with great food.  It has been a godsend.

Today has a list of planned activities:  Fountain hunting and lunch, dinner with friends and then gardening.  Always gardening this time of year.  Today is mostly dedicated to weeding.  Lots of weeding. I will try and think about it like bad cells in bone marrow. Maybe it will give incentive to be very dutiful and complete.

Tuesday, May 15, 2012

Feeling So Helpless, so what to do.

"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald

A child will a very aggressive and very rare, 300 a year,lymphoma is dying.  We saw her less than two weeks ago and she was going to have a bone marrow transplant and life was good.  Now she is saying goodbye. 

The news took my breath away.  We were at Children's for our first "after SCCA"  appointment.  It had not gone as planned so I was a bit Grumpy.  I saw Ruby's aunt and received the news. 

 My mind immediately went into overdrive and I was simply stymied.  What do we do for the parents of dying children?  Do leave them alone to grieve and spend the last few days with the most precious thing in their lives?  Do we go visit?  Do we give them gift cards? Do we do their laundry? Do we take them food? Do we do something? Do we do nothing?

I called my sister Belle.   I asked.  Her answer was "There is nothing you can do". Most people flee.  Most don't know what to do or what to say.  They simply flee.  We know what to do after someone dies but as a culture we certainly lack the "before" part.

Okay that was helpful..... NOT.  So I remembered a post I did a long time ago.  I don't remember the book but I remember the quote.  So here is what I am going to do. 

Anne Holm brought us three kinds of cookie dough.  We had not used it yet so last night Mary-E made all the cookies.  I am going to put them in a basket with some good china cups, some tea and take it to Kate.  The nurses have instant hot water and so when people come, they will be able to give people some tea.  

Something to not spill as the tears do.  A little something from a Mom who has been too close to the same situation, more than once. 

Sunday, May 13, 2012

Dear Ellie Mae and Pearl Anne's Moms

I wonder if you remember filling out another piece of paper work after your darling girls were born.  I wonder if you ever think about your donation.  I often wonder you wonder about where the blood went.  It might be like donating blood.  The donor is thinking about a pin or a cookie.  The ultimate recipient is not on your mind.

As I sit here on Mother's Day marveling that I am still a Mom, I so want to thank you.  The only reason I am a Mom on May 13, 2012 is because of your gift.  Your forethought to give up the cells that lived in the cord between you and your daughter.  You nurtured and fed and loved your baby before she was born. When it was time to continue your journey outside of your body, you handed off that nurturing bunch of cell someone else.  Your nurturing and life giving continued.  I hope you find out someday what a difference this small act made.

I guess you have to think about it like a 2fer.  You gave birth to your daughters and passed that life on to mine. Those two little bags restored the life of my daughter.


I would love to send you a letter and some Fran's Chocolates and try someway to explain how grateful I am for the fact Mary-Elizabeth was here to bake shortbread and make a beautiful card.

 As you know the Mom club is a very special place. Membership is only granted to some lucky few.  Motherhood changes your life in a way that can not be explained.  Your life is never the same, it is hard, it is heartbreaking, it is simply painful.  But few would ever return to TBB (time before baby).  It takes years to realize the job is a life time job. A job that morphs every day.  Some times it keeping close, sometimes it is to stay away.  The job is to figure out when to do which.

While other's disagree, I have always felt that if your progeny are gone then you loose  your magic ring.   I don't think anyone would come ask for your gray hair back but it is inferred. I have faced lose not once but twice.  To have twice had to face the possibility has made me a bit hesitant to take anything for granted. It has made me more clingy and less concerned about somethings.  It has refocused me like a small child trying to incinerate a bug on the sidewalk with a magnifying glass.  But more than that, it has made so so grateful that the bug killers have such great giant magnifying equipment.

I can only hope and pray and beg the gods that your journey has been smooth.  That on this day where Mom's are brunched and coffeed and carded and flowered and ..... you are enjoying your lovely daughters as much as I have enjoyed and hope to enjoy mine. 

We are sort of related now and I hope to meet someday at a family reunion.

Love, Mary-Elizabeth Sierra Lanham's very grateful, thankful and blessed mom.

Friday, May 11, 2012

Holy Names was Invaded by two all grown up college girls. .

Joey and Meb went to have a dressing change at Children's yesterday. On the way home, sort of, they stopped at Holy Names to check in with their roots. 

They were able to see many of their old teachers.  Meb was a bit amused that it took people a while to recognize her with very little hair and monster Chipmunk cheeks.  But those are well trained educators.  They can spot a disguise. 

At Children's they stopped at security to make Joey legal.  The security guys wanted to give Meb a badge and she told them she was a patient and her name. 

The guy said: So you are Mary-Elizabeth Sierra-Lanham.  I have never had a chance to put a face to the name but you had so many visitors when you were here.  So so many." 

She was pleased.  During the last few days she has been working on her scrap book and is starting to realize how many people send notes and cards and letters.  Sort of Delayed Appreciation Syndrome.  A good kind of syndrome.  During transplant she missed a lot of the expressions of love that were sent.  Don't fret, she is discovering it now.

Thursday, May 10, 2012

Jail, Prison, Work Release, Parole and Pardons.

Blue Thunder Jail:  You don't get to go home until your counts are 200. (October 2011)

BMT Prison: You shall stay in your room, you shall not be within 15 feet of any more than three human beings.  If you see someone ready to sneeze.  Duck and Cover.(January thru March 2012)

Work Release:  We are sending you home but you will be at the SCCA Clinic no less than 4 times a week and sometimes more.  We are open on Saturday and Sunday.  You will be at Children's for more than one appointment at least weekly.  Somedays you will be asked to be at both places on the same day.  You will answer your phone any time we call.  If you fail to answer and WE HAVE TO LEAVE A MESSAGE, you will call back everyone instantly and will do so within 12 minutes.  You will fill out your food and drink records and poop records.  If you fail you go back to jail and then we might never let you out. (March 25 to May 3, 2012)

Parole:  You are now going back to Children's.  You may be one hour from the hospital but we don't really mean that so forget it. You are on a very very small tight leash.  You are their patient now but we have the right to return you to jail/put you back on Work Release if we see anything that is out of order.  You no longer have your infusion pump for nighttime fluids abut we are watching.  You have to eat lots of dark chocolate and popcorn to keep your magnesium up and remember, did I mention, WE ARE WATCHING YOU.  Don't try anything funny like getting Children's to let you do stuff that is not on the list. 

No wild sushi eating or bull riding or roller coaster riding.  But remember you can kill animals, fish and gut anything but remember to wear gloves. Don't try and talk them into stuff, remember WE ARE WATCHING AND THAT MEANS YOU.  ( MAY 4TH TO JANUARY 23, 2013)

Pardons:  January 24, 2013

Wednesday, May 09, 2012

Her cough is not RSV but rather human meta pneumonia virus

First test of the less than mature immune system.  Wheezing followed by cough, followed by unhappy body. 
You should have been here last night when we were trying to figure out the new temporal thermometer.  I am going to find a new battery for the thermometer that I can work.

Deep breaths.  And a cough or two.

Tuesday, May 08, 2012

I had a dream and it took me a couple of days to shake it off.

This was not a Martin Luther King sort of dream.  It was a deeply disturbing, upsetting, freaked out when I woke up dream.  One that has been sitting on the top of my chest ever since, sort of like a big hunk of anxiety. 

Dream:

Gathering with a group of people heading to some sort of re-union.  It is warm and sunny but for some reason I have to leave the reunion to take someone to the train or the airport or something. 

We start to drive in my car and head to town. During the drive it begins to become very dark and ominous and then there is snow in the trees and on the ground.  I know my good old 1995 Honda Accord Station wagon is going to do just fine and I head down a hill.  To my surprise the street suddenly ends and we plummet over a very high wall/cliff. I think to myself that when I wake up I will be either dead or in the hospital.

I wake up and I am back with the people I originally left.  The young man in the car is talking about the accident and showing the people his abrasion from where the seat belt held him.  I try to talk about the experience and no one wants to listen. Also the car is gone.  (My dear friend John Sabala will be pleased to know I thought about calling him to get a car. His brother Jim will tell him I said that.)

I tried to have someone take me to the reunion but no one seemed to comprehend that my car was gone and I really needed a ride.

So.  Do I shut up about cancer and having a kid so close to death and being able to bring her back before we hit bottom and certain death?

Do I try and find a new path, do I try and get onto the old path?

Do I keep trying to make people listen about hings like bad hospital food and the need for more purelle in the 4th floor lobby or more bone marrow and cord blood donors? 

Do I realize that our journey is almost done but get a new Car?

Do I get some more sleep and try to make it restful?

In the waking world things are very good.  Discharged from SCCA back to Children's.  She even went to an American Cancer Society make up thing at Children's last night and loved talking with three other girls that are in various stages of healing. 

So I will continue to think, continue to wonder and try to stay away from steep cliffs.

 Who knew this was where maple trees were born?!

Friday, May 04, 2012

Spreading our Wings, a bit.

Sort of Scary.  Sort of Bold.  Sort of........  This is such a weird place to be.  We just hopped in the car and drove beyond 30 minutes.  We did not make it to Flower World because as we headed north the dark foreboding rain clouds headed south and then they let loose of their cargo.  You get the picture.

We ended up at Maltby Cafe.  The home the 5 pound cinnamon roll.  (We brought most of it home.) Then, just because, we started down a road to an unknown place.  Remember we were being bold. 

In case you are wondering, Maltby road leads to the Bothell-Woodenville road.  Turn left and drive through a million and one strip malls and arrive in Bothell.  Turn Right and head back to town.  Okay, not much of an adventure but we did find a really big transfer station. 

It was just nice not to be too worried about being so far away.  She has about 60% of her immune system back.  Some T-Cells.  Some other assorted white blood cells but there are a million of things that she had to experience again in order to really be able to go forth, explore and go back to College. 

 ALL of her Baby Shots. All of them.  Oh well she does not remember the first ones.  Scarred,  my child is going to be forever scarred.  Or maybe I will be the one that needs therapy.  I remember commenting to my doctor that I thought the reason kids were not fully vaccinated had to do with how hard it was to watch your kids go through the process.  
 Happy 1st Birthday Lily.

Little did I know vaccinations were the least of what I would watch her do. 

So, we will continue.  Keep alert.  Keep an eye out for GVH as some of her medicines are withdrawn, Keep praying and recognize each day is one closer to the real end of this process, January 24, 2013.

Thursday, May 03, 2012

Healing is a long slow process but do-able

I don't know much about healing.  I don't think it is something that you are aware of until after it is over.  While you are in it, there is so much going on, or not going on that it is hard to see the progress.  We have to rely on the reflections of healing in other people's eyes. 

  On Day 100 Meb has counts, and a bit of very very very soft hair.  She has her eyelashes back.  She has regained some of her spirit and some of her sense of humor.  All have been regained slowly. 

She also has been dealing with a huge sense of the losses. Her friends are all off having new adventures.  School is passing her by and simple things like going to Red Mill is a challenge.  Every time she sees a baby or a small child she dies a bit inside.  She also has lost confidence in her body.  It has betrayed her in the worst kind of way.  Not once but twice.  She lives in fear of people, sun, germs, unwashed lettuce, woodworking, Christmas Tree water. 

She is allowed to hunt, and gut an animal, if she wears gloves.  Also on the to do list is the right to have a mounted animal on the wall.  ( I am looking for a small deer.)  No monkey handling is allowed.   She is open to being taken fishing but will not be allowed to bait the hook. 

What we need is a time lapse camera. 

we went from bleak to lush.  It seems disconcerting.  When you step out of your life and abruptly re-enter, you have lost your balance and center and other parts that make sense in your life.

Part of healing is the rediscovery phase.  We won't be re-booting, but rather re-inventing. 

Deep Calming Breaths and Drugs get us through the Day.

Today ( Tuesday)was the last LP, it took almost 45 minutes because of the scarring and issues with her spine and the thecal sac and no matter how wonderful the 150,000 television screen can be, it is hard to find the spot when it has been attached so many time.  But she is done with this type of procedure.   Thank God. 

I don't know if I could take another one.  Last time was had finally stumbled crawled, fumbled around to find the right group of drugs, infusions time and Ritz Crackers to make this process something we had to try and manage for several days. 

One of the required elements was the Caffeine infusion. Some one somewhere puts caffeine in fluids and ships it to those who make a request.  In the land of Starbucks, and 1.2 million people hyped on coffee, one would think that such an item would be easy to come by.  How wrong you would be.  Two weeks ago, Mary-Elizabeth Sierra Lanham was treated to the very last infusion at Children's Hospital.  There is a shortage. 

A shortage of caffeinated fluids in Seattle.  Did I mention that there were no caffeinated IV fluids available.  Really.  How could that even be possible.  First the patches for nausea, then Methaltrexate and now this item.  Oh, yes and the time we were working with itty bitty alcohol swabs. It makes me worried on a number of levels.

She mumbled and stumbled through without the infusion.  Tablets and a bolus of fluids was administered and some extra pain meds and she seems to be fine.  It will take time to tell but then that might be why after day 100 they tack on 265 more days, just to make sure.

I finished the first needlepoint. 

Tuesday, May 01, 2012