The letter of the day is “T”. Fitting that it is TUESDAY – but that is not why I chose “T”.

“T” is for TEMPERATURE and our room here at the hospital is freezing. I won’t take my fleece jacket off.  Amanda, who is usually always cold, says she is NOT cold – although her hands feel like ice.  She does not have a fever – even though she is fighting an infection – but every once in a while her poor little body shivers and TREMBLES … nasty infection.

“T” is for TEST as we wait to have a spinal TAP done … they need to see if the staff infection has invaded the shunt in her head or not – if it HAS – then we will have new decisions to make.

TIRED. TIRED.  TIRED.  That is a “T” word that I know all of you can understand without explanation.

TOMORROW. I don’t know.  Can’t plan much further out than a day right now.

THANKS – for all the good wishes and prayers.

Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

And on a fun & light note: from the “Lion King” … Hakuna matata … it means “no worries … for the rest of your days”:  http://www.youtube.com/watch?v=xB5ceAruYrI

Just Laurel

BTW I just thought that if there are some of you out there who would like to read ‘the rest of the story’ about Amanda:

Since the letter of the day is “S” ….

Amanda has a STAPH infection … SPOKE to a very nice infectious disease doctor … we aren’t sure of the SOURCE of the infection … but the staph definitely did a number on her lungs … but waiting to see Neuro doctor … making sure staph is not in her brain or her SHUNT …

Another “S”

They got Amanda cleaned up and she was thrilled to take some SIPS of ice water – after that first sip she had a look of pure bliss on her face.  She held her own with just an O2 nasal cannula … breathing on her own.  She is too tired to do anything but will wake up and talk a little when she has the STRENGTH.

The STAPH infection has knocked her on her butt … she is sick sick sick (another “S”) but holding her own … doctors have been great but we SIT and wait and wait and SIT.

just Laurel

Wish I could say more – but not much has happened. We are still in the ICU.  Amanda is not better – no worse.  Like the last time she had pneumonia she is blowing up like a sausage from all the fluids.  Not pretty.  She mostly sleeps while she gets help with her breathing.

I shall try to give you more of what I’m feeling … it seems I have some time here to write.

The letter of the day shall be “S” – and “S” stands for “sad,” “scared,”.and “still.”

Why are Ted and I sad? After her last bout of pneumonia and three weeks of hospitalization, we NEVER wanted to do THAT again.  I’ve been so sad lately ‘cuz I had a feeling she was spiraling downward to this … and she did.  It’s not fair.  For her.  She can’t eat or drink, hooked up to IV’s and breathing machines, black and blue from needle pokes … It’s just not fair.

Why are we scared? The unknown.  How many days?  How many weeks?  How long will this hospitalization be?  How long until we can go home?  How long until Amanda can go home to her apartment?  How long will we live the hospital life?

So that leaves “still”.

Psalm 46;10 Be still and know that I am God.

I’m trying.

Just Laurel

Here’s an Amanda update … in case you were wondering …

And…

No news … is just no news.

She’s not getting worse … sleeping a lot … she’s getting help breathing but is requiring less oxygen – that’s a good thing! Can’t eat or drink anything yet.  Waiting for more blood tests and a consult from another doctor to determine if she really is improving and what it is we are really dealing with.

I’ll post more when there’s more to post.

Thanks for your concern and interest and prayers.

just Laurel

I decided that this was the best way to give all of you an update on Amanda … not my usual kind of blog … but the circumstances demand I give y’all some information.

To bring everyone quickly up to speed … ever since Amanda’s awful bout of pneumonia almost 2 years ago we have been diligent in making her do daily deep breathing exercises and monitoring her oxygen levels. Part of keeping her lungs healthy also meant wearing her AVAP mask every night while she sleeps.  It’s like a c-pap or bi-pap mask that snorers or people with sleep apnea wear – it forces air into her airway to keep it open – the AVAP also literally blows breaths.

We have been struggling with Amanda the past six months to keep her mask on all night. We’ve tried everything from bribes and rewards to pleading with her for her own health and safety.  This was probably not the single reason, but her NOT wearing her mask, coupled with some pneumonia that moved in to her lungs – caused her to crash yesterday.

For the past week Amanda was having really poor oxygen numbers (we check her oxygen level with a pulse oximeter – one of those thingys they put on your finger with the red light). She did not have a cold or fever – just bad numbers and maybe a little more tired than usual.  Then I noticed she was breathing pretty shallow and I was trying to get her to cough deeply.

Saturday morning I checked on her before the ladies 8am bible study … she was up and watching TV and was alert although her color wasn’t good. After bible study I checked on her again and she was looking worse.  I packed up her oxygen machine and told her we were going to our house for the day so I could watch her.  I already suspected that we’d be at the ER with her.

When I got her to my house – her color went worse … her lips were purple and she was sweating – although she said she was freezing. I had Ted hook up her oxygen machine and had Amanda in the kitchen in her wheelchair with an oxygen cannula on her nose with 2 liters of oxygen.  Within minutes she turned purple … then gray … then slumped and lost consciousness.

The next part is a blur. Ted and I thought she was gone – right then and there. I told him to call 911.  We didn’t know if she had a heartbeat.  We grabbed her out of her chair and laid her on the family room carpeted floor.  She was gray and her finger tips were dark purple.  I could feel a carotid pulse but it was slow.  Maybe one gasping breathe every minute.  Ted was having problems reaching 911 – probably due to his panicked state on the phone but our dear neighbor Jake, a Trenton cop, heard the call and knew it was us.  I actually started some breaths and chest compressions on Amanda and then we had a room full of paramedics.  Probably 2 ambulances and 3 cop cars out front … I can’t remember exactly.  They worked on Amanda – got the AED on her but I don’t think they had to shock her.  She was still unconscious at this point.

They got her loaded up as fast as they could in the ambulance … I was amazed at how Trenton cop cars appeared everywhere and stopped traffic on West Road and Fort street while the ambulance raced through. Not the kind of escort you’d want – but it was pretty unbelievable.  Thanks Jake.

So she regained consciousness at the hospital. PICC line is in … meds … oxygen … nonstop AVAP mask … basically a case of pneumonia but with Amanda’s compromised lungs and poor breathing – it’s kinda a bad situation.  She’s stable.  We are in ICU.  She is alert and tries to talk (she’s not allowed to take the breathing mask off – her O2 sats drop too much) and is tired from it all – so she sleeps a lot.  So far we’ve not had to be intubated.

Yesterday was a tough day. Thanks to neighbor and Trenton cop Jake, to Pastor Rick, Kim Schutt, and Jack Scola for stopping by the hospital ER.  Thanks to the EMT people – you were all great and very kind.  They even checked back in on us in the ER throughout the day.  Kathy Green – your son was wonderful.  I am still numb – I think even a bit PTSD from it all.

So that’s where we are. Not where we want to be of course.  But we are here.

Thanks for all your prayers and thoughts. Things are stable for now.  No – we don’t need anything.  We’ll keep you up-dated.

Just Laurel