Monthly Archives: June 2015

A mostly uneventful evening and night.   She rested a lot today and got some sleep.  Zayne is not comfortable with the strong anti-virals that are being administered to her.  She has thrown up and is itchy. This means more meds to counter-act the symptoms caused by the anti-virals (or which ever med is causing a problem).  She has enough meds that she is sleeping comfortably.  Well, I like to believe she is comfortable.  Her little body has gone through a lot, and it ain’t over.

She took one nibble of a cracker and water for the day.  Maybe she will eat tomorrow.

Her drain tube is hurting her, too. The drain and the electrical leads (which go right into her new heart) are going to come out tomorrow.  The new heart didn’t need to be paced, so the leads weren’t used. It 
The room is filled with glowing lights, beeps, alarms, nurses, and talking.  It is a good thing that I am tired and should be able to sleep for a bit.

Drank more water and a nutrition drink.  Foley is out, removed more stickers, and reduced meds going into lines – all during a snooze.

Breathing tube taken out at 9:15
Silent screams replaced by real ones.  She is ticked off that she can’t have milky (Pediasure), and she doesn’t like having her water intake restricted.

Arms are wrapped to keep her from ripping out IVs. 

Finally, Z seems to be resting.  It took a while to get her sedative drips going and configured for her needs.  Her nurse told me that Zayne is either all in or all out.  Since she still has the breathing tube and is not at all calm when semi-awake, she has a little more sedation to keep her asleep.

Before I slept for a few hours, I saw that Zayne was talking. Unfortunately, I am not proficient at lip reading. However, the charge nurse told me she said “I want water”.  If she wakes again, I can offer her some water on a rag. 

All night long, there are alarms going off.  Most of the time, it was just to let the nurse know to change out the medication.  There was even an X-ray at 5 am.   She had her eyes briefly open for the x-ray, but looked terrified to me.  I’m happy to see her sleeping at 6 am.

She must be pretty hungry, because I realized that she didn’t have any Pediasure at camp, and had only nibbled on food when I picked her up at lunch time.  That would explain why she seemed very desparate for her Pediasure drink prior to transplant.

We’ll see what the day brings.  I would like for the breathing tube to come out, but if she still needs it for her high pressure, then I want her to stay sedated.  It is unnerving to watch her pulling on her arm restraints, silently screaming, and seeing the fear in her eyes. I’m told that she won’t remember any of this (hopefully, it will not haunt her dreams).  I won’t forget.

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

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

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.

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.

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.

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