Amanda just gave me another “C” word.

CAT.

Huh?

Amanda has been sitting up in her wheelchair this afternoon with a tray in front of her. She ate dinner (baked fish, macaroni and CHEESE, and lemon meringue pie) and has been sitting here, watching tv and just being squirmy and tired and restless and confused.

She tried to push the tray aside, and I asked her, “Where are you going?”

She answered, “To see the cat.”

“What cat?” I asked.

“There’s a cat in the hall” she replied.

“No there’s not,” I told her.

“Yes there is” she argued back.

<<sigh>>

She can tell you her name, birth date, address, dad’s cell phone number, and all kinds of things but she can’t remember what she ate for dinner and now she’s seeing cats.

I wish she’d get her energy back and her mind, too. She’s just too CRAZY for me right now.

Just Laurel

 

And the letter of the day is “C”.

C is for CHURCH and we are sad to be missing church again.

C is for COLD. It is COLD outside.  The furnace was not on at home and I woke up freezing in the middle of the night.

C is for CONFUSING. What is confusing you ask?  Amanda is.  Now I don’t want to have to explain but if I had to put it in one, long, (probably grammatically illegal) sentence, well here goes:

A bad staph infection went systemic and wreaked havoc on Amanda’s lungs, and not wearing her AVAP mask probably made it worse and now we have cleared up the infection but will probably be on IV antibiotics for a while still and her lungs are clearer now but she still does not breathe when she sleeps and we probably can’t fix that but the neurosurgeon said her CSF is clear but now he is bringing up Chiari issues (which I tried to bring up 2 years ago and no one listened to me) and the cardiac doctor does not like her high heart rate but says she can handle it but says it can wear her heart out and now oxygen is not what she needs and we all really don’t know why she does what she does and it seems impossible to ever conceive of balancing it all out while all the while she carries twice the CO2 that you and I have.

Sorry – I will not be taking any questions on the matter.

We are okay – tired of being here and weary of it all.

Breakfast was a CHEESE omelet again and lunch was a grilled CHEESE sandwich and COTTAGE CHEESE.

That’s all I got for now.

just Laurel

1 Corinthians 14:33 For God is not a God of confusion but of peace.

Today is brought to you by the letter “B”

B is for breakfast.

Amanda just made up for a week of practically no food by eating a huge breakfast: a cheese omelet and 2 sausage patties.  She ate the whole thing!

And then,

Nap time.

Tuckered her right out.

B is for Brrrrrr.

It is October already and that means it is time to take the BOAT out of the water. I am with Amanda at the hospital so that he could go check on our boat today … and he said it is freezing.  But he did get some work done and some equipment taken off – all preparations for putting it away for the winter.  I am glad he can get away from hospital sitting and away from work stresses to go spend time at the yacht club.

With infection clearing and medication induced brain fog being lifted, Amanda is acting much BRIGHTER.

just Laurel

Isaiah 40:28-31 Do you not know?  Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

More Dddddd’s …

DECLARATION!

Amanda’s spinal fluid tested negative for staph infection and had no white blood cells (white blood cells show up where there is infection … so no white cells in her fluid means no infection in her brain or shunt!).

I DO DECLARE!!

And then there are the words,

DINNER,

and

DEGREASE.

Poor Amanda has gone a week without a hair wash – she’s been too sick and in bed the whole time! Well, this evening we got her up in her wheelchair, she ate a DINNER of macaroni and cheese and then we washed her hair and used the blow dryer on it.  It was so dirty/greasy she looked like she had brown hair.  We degreased her.

She’s blonde again.

We are making strides. She is still very weak and easily confused.

But things are moving in a positive ….

DIRECTION.

Dat’s all folks.

just Laurel

Amanda 7.2

… more duh-duh-duh-Ddddddddd’s …

“D” is for DONE. Test was done real quick.  She was a champ and did not even need sedation.  First impression of the spinal fluid was that it was “nice and clear”.  That’s a good thing.  Infected fluid is cloudy fluid.  Now they will look at it microscopically and try to see if they can grow any staph or other bacteria.

“D” is also for …

DELICIOUS.

Amanda sat up in bed at lunch and ate some chicken noodle soup and a buttered roll. She did pretty good.  Musta been delicious.  (I sampled it and it was pretty good – you know – for hospital food.)

Popcorn is also delicious – and my dear Teddy knows that I really really like popcorn – good ‘ole buttered, caramel, cheddar, or kettle corn. He’s been buying me bags of it so I have something to snack on either at the hospital or at home when I’m recharging my batteries.

“D” is for DEAR.

There I was, waiting my turn at the hair salon last night with my eyes closed … and just as I drifted off to sleep someone starts kicking my foot. A co-worker at the surgical center I work at had read my postings and knew I was going to be at the salon and she happened to have an appointment right near mine and came with a lovely gift:  a very sweet card, a puzzle book !!!!!  Yay Yay Yay!  I have a puzzle book to work on at the hospital when I’m bored.  And a bag of chocolates – not just any chocolates but Hershey’s HUGS.  I really like my job – I tell people that all the time.  But when you can work with people you like (and Krista – my salon friend- is not the only co-worker I can say I like) and to be able to call them my friends – THAT is so very DEAR.

Enough duh-duh-duh Dddddd’s for now.

Just Laurel

 

Day seven in the hospital is brought to you by the letter “D”

“D” is for DRIVE and today Ted has to drive to Cleveland and back for his job. He was up early and that brings us to another lovely “D” …

DELIVER

He stopped by the hospital on his way down the road to deliver me a cup of coffee   🙂    It was lovely.  However, the nurse was nice enough earlier to also bring me a cup of coffee (not as good as the one from home) but that resulted in too much caffeine.  One of those should have been DECAF.

Amanda slept a lot last night but is doing this DESAT thing.

What is that “D” word you ask?

Amanda’s oxygen levels all night would DROP and she would ‘desaturate’ – meaning she was not receiving enough oxygen through her lungs – and the alarms would go off and her heart rate would soar to try and move the oxygen-carrying blood. It’s like watching a roller coaster … all … night … long … and with all the bells and whistles and alarms.  Okay – I shouldn’t complain ‘cuz we both slept pretty well from 10p to 3a … and THEN the roller coaster ride commenced.

“D” is for DREAM. As I was sitting next to Amanda’s bed and DOZING off I had a dream that Amanda was in our kitchen at home and sitting in her wheelchair.  She started turning purple and all those other awful colors that she turned last Saturday and I said, “Oh look everyone, look at her color, she’s going to crash” …. And then I woke up.  Bad dream.  Bad bad dream.

So right now I wait while she finally has her spinal tap – or lumbar puncture – whatever you want to call it. We need to see if her staph infection is in her shunt and brain.  That will DETERMINE what happens next.

ttyl

just Laurel

The letter of the day is “A”

But you should already know that since this is day 6 … part 2.

And “A” stands for

Advances … as in … we are making advances. Finally.  Went for a CT scan of the head and spine so that they can get ready to do the spinal tap.

We’ve been waiting for this because it will give us…

Answers.

I pray the staph infection has not invaded her head and shunt. If it HAS then we might be looking at a transfer to Children’s Hospital of Michigan and having her shunt replaced.

But it is better to have answers than to sit in the despondent valley of the unknown and unanswerable.

“A” is also for appointment.

I feel guilty because I had a hair appointment today at 5pm and I was going to cancel it but Ted said I should go. Treat myself.  Don’t reschedule.  Clara said I should go too.

Ted can hold down the fort

See you all back here in awhile. (not really an “A” word – they are two separate words – but I feel like doing what I want to do since I don’t really have much choice for the rest of what’s happning around me right now!)

just Laurel

Day six of Amanda’s stay in the hospital is brought to you by the letter “A”.

A is for airway – and Amanda is definitely breathing better with her oxygen requirements turned way down. When she is awake she continues to breathe without her mask and gets by with the nasal cannula.

When Amanda is awake, however (another A word if you hadn’t noticed) she is irritable and uncomfortable – she keeps repeating “I don’t feel good I don’t feel good” and when I ask her where she feels bad she replies, “Allover.” (another A word)

The answer?

Acetaminophen

For those of you who don’t know – that’s the generic drug name for Tylenol. We have found that a healthy dose of acetaminophen swallowed down with some applesauce has done wonders for making her comfortable.  She must feel just awful.  Tylenol is the answer.  She got a good dose at 6am and has rested quietly for 3 hours now.

A is for awesome.

That’s what my cup of coffee made by Teddy and delivered to me piping hot from home just the way I like it at 6:30am tastes.

A is for anniversary.

Today is my daughter Jillian and her husband Andy’s 4^th Wedding Anniversary.  Happy Anniversary <3

Just Laurel

Today’s update is brought to you by the letter “P”

Because “P” is for

PATIENCE

And Lord I need a big dose of it!

Sometimes things just move slow in the hospital … and tests don’t get done … and things don’t happen fast enough.

And besides that … although Amanda is breathing MUCH better, she is still very sick and that makes her restless and difficult. She squirms, and moves, and wiggles, and wants her pillows fixed and she’s STILL uncomfortable and when you ask her want she wants she replies that she doesn’t know.

“P” also stands for

PIZZA

Such a convenient dinner … I buy one, eat a few pieces for dinner, then I go back to the hospital and Ted comes home and eats pizza for dinner too. Very microwavable.

“P” is also for

PROGRESS

…of which we are not making much of … in any direction.

Just Laurel …

Sitting here eating pizza …

Trying to be patient.