Today is the 2 week anniversary of Amanda’s collapse and our 911 call. It is day 15. 

We came home from the hospital this past Wednesday. She is still very sick but there was little more that they could do for her … antibiotics are working and white count is down … lungs are working as well as they can.

So in keeping with the theme of the past 2 weeks …

Today is brought to you by the letter “U”

U is for UPDATE.

And that’s what I’m doing … giving you the update.

U is for UNLIKE.

And unlike most all of her other hospital stays where Amanda bounces back and is eager to get home and back to her usual … (oh – another “U”!) we have no bounce this time. She is weaker than ever.  Her body is a bit bloated from extra fluid retention so sitting up in her wheelchair is uncomfortable (wow – didn’t think there’d be so many U’s) and quite frankly she is so weak that she can’t hold her head up for long.  We keep her semi-reclined and propped up on the big chair in the family room.  She sleeps … drinks a little … eats a little … sleeps.

U is for UTTERLY.

What a funny word. Makes me think of UDDERLY

Ha ha – must keep a sense of humor.

We are utterly tired. We are utterly scared and in pain for how this is going to play out … will Amanda get her ‘bounce’ back or not. We are utterly at God’s mercy and timing.  Ted and I keep going by the words, and our prayer, and our mantra for now:  “Strength and peace.  Strength and peace.”

Of course, I probably could have kept this post a lot shorter by summing it all up in Ted’s perfect word that describes this whole thing …

UNBELIEVABLE.

just Laurel

The letter of the day is “H”

H is for HOME.

We are home.

Home is good.

But Amanda is not so good. I’ve never brought her home so weak and confused before.  But, they couldn’t do anything more for her at the hospital, so we are all hoping that home will be the best medicine.  She is on oxygen at this point, and will be getting IV antibiotics every other day.

She is not using her phone yet – can’t figure the buttons out at this time – so don’t try to call her please. Fortunately I do not work for the next couple of days so I will be looking after her.

I’ll let you know later how things are going.

Just Laurel

By the way …

I know I already used the letter “A” but I asked Amanda to pick a letter of the alphabet and (of course) that’s the one she told me … easy ‘cuz it’s the FIRST letter of the alphabet and “A” is for

 

Today has been brought to you by the letter “A”

A is for AMANDA

Oh, Amanda, what are we ever going to do with you? We almost lost you eleven days ago and here you are, still kicking and fighting.

A is for AWFUL

That infection you caught got into your blood and went and partied in your lungs. Awful bad infection has left your lungs in awful shape.

A is for ANSWERS

Oh how I wish we could have the answers to what will make you better? Hopefully, with the talk of them letting you out of here tomorrow, we will find that home will be the best medicine for you.

A is for ANOTHER day

For each and every one of us, to wake up tomorrow morning is a gift. Thank God for sunrises and the blessings of another day.

Just Laurel

 

W is for WONDERFUL …

… and wonderful is how my house smelled when I went home for a few hours this evening.  Ted and I have been grabbing fast food and $5 pizzas and today a friend from work dropped off a crock pot full of soup on the back porch.  When Ted got home he brought it in and had it plugged in so I smelled it when I stopped home.  A loaf of bread and homemade sour cream streusel coffee cake to top it off.  Soup was delicious and made my tummy warm and happy and full.

Thanks Maryanne 🙂

W is for WORK..

I had to get someone to work for me last week, but I am working my days this week.  Ted will be here in the morning in time for me to leave the hospital and go straight to work.  I miss work and the people I work with.

Hopefully Amanda will be more herself tomorrow.

just Laurel

 

 

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