Silent Scream

Just when I thought that Zayne would stay sleeping for the night, she starts to wake up.  She is screaming, but there is no sound due to the breathing tube down her throat.  She is trying to move about, but the restraints hold her arms down.  The nurses and docs tell me it is very normal.  However, it is freaky looking and seems more appropriate for a horror movie.  I wish the nurses would move faster to get her morphine.  Hopefully, the newly installed morphine drip will let her rest through the night. Speaking of rest, I will try to get some. Her room is a hubbub of activity.  

I will try to sleep, but wish I could lay next to Zayne.  She has too many lines, wires, and drains.  I’ll have to settle for the couch in her room that is in the Cardiac Intensive Care Unit

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Out of OR

Zayne made it through the surgery without a blood transfusion, but she is getting one now to help her stabilize.  

  

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Update 4.5 hours

Zayne is coming out of the OR.  Her old heart was in bad shape and caused her to have high pulmonary pressure.  The new heart is trying to pump at a normal rate, but that could damage the new heart.  Zayne is on additional meds to help with the pressure.  She has a catheter in her heart so pressures can be read in real time.  Zayne will need to remain intubated for 24 – 36 hours to give her lungs a chance to get used to the pressure.   I haven’t seen her yet, but she will be full of tubes.  I’ll post a disturbing picture when I get to see her.  I’m sure it will be difficult.

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Update 2 hours

She is on heart-lung.  Old heart out (looked very small and thick), and new heart is sitting in her chest.  The surgeon will sew it in and let the blood flow to check for leaks.  When the plumbing looks good, it will get started using electrical current.  When she comes back to her ICU room, I will get kicked out for an hour while they get her situated.

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Update  1 Hour

Zayne’s chest is opened, and her current heart looks pretty bad.  I was told that she definately needed a new heart.  The donor heart is on the way by car.  When the new heart is in the room, Zayne will be placed on a heart-lung bypass machine then her heart will be removed.  She is doing well.

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Taken Back

Zayne was taken back at 5:25.  At least 4 hrs of surgery.

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Hanging out and waiting

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No info yet.  Watching Frozen.

5 pm – drugged and waiting to go back.

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Just got the call – scheduled for 4 pm

Check in later.  Hospital just called there is an available heart.

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Holter Monitor

Zayne is having cardiac check-ups every month.  Since it has been over 1 year, it was time to wear the Holter Monitor (basically, a 24-hr EKG).    She has experience wearing one at least once per year since she was wearing onesies.  Just because she has done it before, doesn’t mean she likes it.  At least she is getting better at wearing it and not crying.  It seems that  Zayne still has issues with the adhesives (just like Mommy and others in the family).  Hopefully, the hospital can accommodate her skin sensitivity when she goes in for her transplant.

We are still in wait mode for the transplant, and don’t know where Zayne stands on the waiting list.  We anxiously await the call ( (I really mean dread) .

ChasingBunny

Chasing a bunny

Riding bike and wearing Holter Monitor

Holter bike riding

Adhesive problems

Not comfortable and starting to blister

 

Zayne wants to share a couple of pics of our second brood of baby robins.  The mamma takes away the shells and the poop.

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20150605_132320First time fishing.

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Checkup

A checkup isn’t complete without an iPad.

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And a visit with the rabbits.

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And a little talk about death (not pictured) between the hospital staff and me (the mom).   I sometimes wish that the choice for listing Zayne for a transplant would be easy.  If she was sicker, I wouldn’t have questions.  It is difficult when Zayne is so happy and seems “healthy”.  I have to remind myself that it isn’t normal when she usually can’t walk from the car into her school.  It isn’t normal that the stairs in our home are an obstacle (she often asks why we have stairs in the house).  It isn’t normal that she is gasping for breath after putting on her pants.  Then there are times when she can put on her pants, walk into the school, or run a short distance and proclaim that she doesn’t need a transplant.

Lung disease is a concern and her pulmonary pressures are already high enough to make a transplant more complicated.  Maybe, I have waited too long to list her.  Maybe the name of this blog post should be “A Mother’s Rambling Self Doubts”

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