Crazy Week

These two girls love each other so much!

Bella is such a happy little girl.  Caught in the bath!

Haha!   Bella got ahold of my phone!  Happy day!

Bella took two trips this week.  One to Physical Medicine and Rehabilitation and one to Grandma’s farm.  The trip to the farm was a nice break from the house.  She and I spent the entire time there on my Mom’s bed just sitting around and breathing.  It was 100 degrees outside where everyone else was fishing.

Our trip to PM&R  - I’m still torn about whether or not it was a total waste of time or not.  Yet another doctor to stand there and stare at her knee, then look at the x-rays, then hand us off to someone else to see, but make sure and come back in four months.We’ll see.  She wants us to go back and see ortho again.  Since I refuse to return to the first one we saw, I have to go through this whole process to see a new ortho.  (insert angry phone call)  Couple that with lots of days and nights with no nurse, and it’s been a long week.  There are times I want to wrap up my sweet girl and run far, far away.  But we will keep at it.  We are running into this idea that kids on vents don’t walk.  They ride in wheelchairs.  Well, explain that to my baby who wants her freedom.  I just need someone to fix her knee – it’s dislocates constantly.  Someone who will see pass all the equipment and believe in her like I do.  We’ll figure it out babe!

Special Mother

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

I read this as a teenager. It made such an impact on me that I remember where I was sitting in my parent's living room, and I have a terrible memory - so that's saying something.

At the time, I didn't understand the last line. It's means that the mother is a saint. She is wonderful, yada, yada, yada. How I interpreted it is "give the woman a mirror, so she'll see herself and her expression and remember to smile or maybe some days, force herself to smile."

Then I was given it in the long ICU stay by one of the Attendings. He is a really sweet man. He is of German heritage and looks a lot like my Dad. I instantly trusted him. He was implying the first interpretation - You are awesome, Mom. Keep it up!

I don't know about other mothers, but I still really think my original view is more in lines with reality. Like today, with no nurse, five therapy appointments, no access to the outside world what I need is the mirror over Bella's bed to remind me to smile. This is the face my baby sees day in and day out. There should be smiles and love in my eyes for this beautiful girl. She deserves it!

Bella’s Week

Hanging out with the family – eating her toes and showing us how flexible she is!

Bella sees it – Bella does it….Oh, you are finally letting me hold one of these, well…let me just send a few texts real quick.

And I think I can totally do this myself, thank you nurse.

Water in my tray?  OK.  How fun!

And we said good-bye to Miss Earsel.  How we will miss you, Miss Earsel.  She has been with us almost from the beginning.  We wish you all the best!!

Wednesday Bella decided we needed a trip downtown.  Two chest x-rays and three vials of blood later, the doctor still doesn’t know what is up with you Bell.  I guess you just like breathing at 70 – 85 breathes per minute with retractions on the vent.  That’s fine.  We’ll just watch you even more!

The only thing that came back from her blood work was an elevated platelet count – which we always get.  That may be caused by chronic inflammation.  I am so hoping for answers and ideas from Physical Medicine and Rehab this coming Friday.  Hoping we can figure out what your legs are doing or why they aren’t doing what they are supposed to be doing.  Fingers crossed for a good week!

Bell’s Week

How these girls love each other! Bella’s favorite thing is to be off the vent and in the living room with the family. This week she could handle breathing on her own for about thirty minutes and then she had to get back on.

Sister rocking her to sleep and looking at the ads with the nurse. She is so funny! I’m have high hopes for this new nursing agency – still doing paperwork and interviews/orientations for the nurses coming with us to the new agency. I had a long talk with the Director of Nursing. How I hope things go well!

Bella’s Week

Therapy shots:

This is amazing – she has never sat up on a stool before – ever!  She would panic and freak unless she could feel our arms holding her tightly, but look!  It just all clicked!  Not just sitting there, but reaching and coming back to the upright position.  Wow, girl!

Using the stethoscope.  I think I can do that!  Thanks so much!

Cute video of Bella and her sister

Silly video of Bella

OK – that was all the happy stuff.  Feel free to stop reading now. 

Warning: whine ahead.  You have been warned.

During Speech, we feed her some Stage 2 Corn and Rice, and then suctioned some of it out of her trach.  Great!  Combine that with the fact that we can’t get liquids thick enough to not aspirate on and her Budda belly and her toxic gas and I have made the royal decision to make our beautiful girl NPO for a month.  I figure if it’s Celiac acting up that in one month’s time everything should have cleared out of her system and we’ll know.  I’m hoping it helps her poor tummy.  All of this gas and bloating isn’t normal.  All that won’t help her aspirating, but it’ll help.  Aspirating is dangerous.  We’ll see.

I’m going crazy – slowly, but surely.

Two years ago we left the hospital, went for our first ambulance ride, and came home.

 

 

I was so excited, but I struggled.  I struggled with having strangers in my home.  Reality is I still struggle with strangers in my home.  I was grateful to read this post.  It’s wonderful therapy to know you’re not alone. 

I feel so guilty.  I am so grateful for our nurses (well, most of them).  Truly.   Some are like family.   And Bella is beautiful.  We adore her.  But she is intense.  She needs a lot of time and attention.  Her care is extensive.  My other children would have no life if the nurses were suddenly gone.  But you see, on the inside of me is a very introverted people – hermit might even be a good word.  Having someone in my home, there is no where to go to escape.  There are days I spend a lot of time in my bathroom.  I feel guilty because on the days I’m not too fond of the nurse, I don’t spend as much time with Bella.  I have to force myself to interact with her because I also have to interact with the nurse.  I have constantly supervised visits with my own child.  I have to follow the nurse’s plan of care versus just doing what my mother’s intuition says (most of the time – I do make exceptions – but that means I have to be ready for a battle, so I pick my battles.)  It’s been two years.  Two very long years.  Every time this discomfort hits, a small piece of my heart dies.  And right at this second, my heart hurts.

On the other hand, what do I expect?  These nurses come and work in my home for twelve hours straight.  They aren’t robots.  They need human interaction too.  Really, I’m just struggling with a couple of nurses.  But I feel trapped.  How do you ask someone to please not come back because they stress you out?  This is their job.  This is how they pay their bills.  And they are people.  They have feelings.  They have hearts too.  How do I balance all of this?

Then there are people who have no nursing.  And I feel guilty for complaining.  (Sorry Lacey!)

Then there is hope.  Hope that Bella will get better.  Hope that she will be able to be a bigger part of the family – instead of just the sweetheart that we all adore, but who can only come into the living room for short periods of time each day.  Hope that she will one day be able to tolerate stimulation so she can be with us for longer.  Hope that she will be able to breathe without a machine or eat without a machine.  Hope that we can be more normal – and not have nurses.  But two years later and we are still here – breathing almost 24/7 through a machine with 155 hours of nursing a week.

What a hypocrite I am!  We have a living, breathing (albeit through a machine), beautiful little girl.  She is charming and beautiful.  She has the cutest sense of humor.  She needs help living and we are blessed with 155 hours of help a week.  My personal problems just have to be dealt with.  For she is Bella and we love her.

My beautiful happy girl!

Tests, Crazy, and Headed back to sick

On Monday we headed down town for a GJ change, labs and sedated ABR. 

Keeping her busy on the long drive down.

A PICC placement was having complications(so sorry for whoever that was), so we got put into a different IR room.  Unfortunately, it was a sterile room, so I had to dress up in the bunny suit in order to accompany Bella into the room.  I never get to stay for the procedure, but I do get to make sure she is situated correctly and all of her machines are plugged in, suction available, etc.  Last time they changed her GJ she was so mad and upset she was foaming at the mouth and her circuit was full of junk.  But this time she was happy at the end.  Who knows?  Maybe it was my fabulous attire!

We did a lot of waiting and looking at fish tanks.

Sweet girl – her hearing is “essentially normal!”  Amazing!  That is such an improvement.  She had mild hearing loss, then sensitivity loss, and now this.  Incredible – tubes are wonderful!  She will continue to be regularly monitored – the audiologist wants every six months.  We’ll see about that.  But being on gent and lasix, she is at risk for drug induced hearing loss.  So we monitor.  But she told me that the loss would start in the high frequency first – so s, ph, th.  That is what I’ll watch for.

And finally headed home.

She is so funny.  She has learned to laugh around the vent, but it beeps.  She gets so silly and crazy at times.  I just love her!

She is headed back to sick – yellow/green plug this morning and fever.  We’ll see.  Hopefully it’s short lived.