Zayne's Heart

As Zayne becomes unattached from tubes/wires, she is becoming more attached to me.  Between that and visitors coming when Zayne is sleeping, I haven’t had time to write an update.

Today, Zayne drank three times more Pediasure than the previous day.  However, she is still not interested in solid food.  She took two long excursions around the CICU.  The pressure bandage was removed from her arterial port site.  The groin central line was removed, but this was a painful procedure since the adhesive was stuck pretty good to her skin and the stitches were extremely tight.  While flushing the IV in her hand, Zayne was in a lot of pain.  That means the IV line is no longer good, and the IV was removed.  For the first time, Zayne’s arms are unencumbered (except for the blood pressure cuff).  She is tolerating all the tubes and lines extremely well.

The final immunosuppressant infusion was delivered, today.  These powerful antirejection drugs make her pretty sick.  She received multiple doses (4-6 hrs long for each dose) of Intravenous immunoglobulin products (IVIG) and Anti-thymocyte globulin (ATG).  The initial 2 doses were really hard on Zayne, but I insisted that she be premedicated for the final 3, and she either slept or stared off into space).

Zayne got cleaned up including washing her hair with a waterless shower cap that contains shampoo and conditioner.  You just put on the shower cap, massage, and towel dry.  She was in a drugged catatonic state and only communicated to display hostility when her view to the TV was blocked.  

I’m amazed at how well she is doing. I keep looking at her monitor and see a normal (yet strange to me) EKG and a good blood pressure.  Her new little heart is going strong.  The central neck line is the only one left.  Zayne should be unhooked from all IV meds on Saturday (July 4), but the port will be left in place until the docs are comfortable.

We got moved to the “annex” – there are 2 CICU beds in the CCU.  There is one dedicated CICU nurse for the 2 rooms.  Shortly after the move, Zayne was smiling and laughing.  It is the first time I have seen her play since before transplant, and it makes me very happy.  Zayne was counting and interacting with me while reading books.  The old Zayne is still there and is beginning to emerge.

Last night was the fewest interruptions and minimal beeping.  Between 1 and 2 there were 2 trips to the potty, and that takes 2 people besides Zayne.  At 6 am, she was feeling well and got up on her knees in bed – she was ready to bolt.  Zayne said her stomach hurt, so the nurse was about to give her an IV med to settle her stomach.  It was a good thing that I woke up to hear them talking , because it turned into the first #2 trip to the throne.  I just needed to ask Zayne why her stomach hurt.   She was planning on sitting in a chair, but was pretty tired from her walk.  Her walking is much improved from yesterday.

Zayne was chosen to move to the “annex”, because her bed is needed.  The Cardiac Intensive Care Unit (CICU) is full, so she will be moved to the Cardiac Care Unit (CCU) but will still remain a CICU patient. We will move around 9 am, before she is hit with today’s tough medicines.

I hope I won’t get in trouble for sleeping in her bed

Today had significant milestones to poop on Mommy.  The swan catheter measure her pulmonary pressure.  It was strange to look at the yellow tube that was pulled from her neck and realize that just seconds ago it was in her right atrium, right ventricle, and pulmonary aorta.  Next accessories to be pulled were the chest drain and electric leads (also on her heart).  A little morphine was needed to help this procedure which included a small stitch at the drain site.

No more bedpan.  Zayne insisted on going to the potty.  She walked for the first time with her new heart on very shaky legs.  It took 2 people to help her walk – I helped her walk but made sure I wouldn’t lift her from under her arms if she fell.  The nurse pushed the huge med poles that are tethered to Zayne via tubes and wires.

Wiping out the immune system is an itch (and a word that rhymes).  Last night Zayne had a medicine which made her pretty sick.  Today, a 6 hour dose of a different medication to continue the 4 day process.  Her poor little body is being brutalized by these drugs.  She feels awful and is lethargic.   Once her immune system is gone there will be 3 months of tweaking medications to find just the right dosage that will keep her new graft (heart) from getting rejected, but leave her with a little bit of an immune system.

After having more drugs to help counter-act ill effects, Zayne went for her first walk down the hall.  She was pretty shaky, but managed to go a short distance.  I know she isn’t feeling well because she had no interest in picking out a toy from the ‘treasure box’, and wasn’t interested in playing on the iPad.

Grancie helping Zayne walk down hall

After a nice nap and a little Pediasure, it was time to take oral meds as some of the IV meds are switching to oral.  I had asked for help with getting Zayne to take her meds, and a child life services specialist brought me a reward page and stickers.  I have no idea how to use choices and rewards when the kid doesn’t respond except to shake head ‘no’ and squeeze lips shut.  One of the meds must be taken at an exact time, and the nurse ended up forcing the meds into her mouth.  The PTSD begins.

Payback begins too.  I was comforting her when she claimed her stomach hurt.  I told her that was because she was crying, but quickly realized she had a new heart so that shouldn’t be the reason.  Then I smelled something weird and realized my hands and stomach were wet.  Sick medicine poop.  Her stomach stopped hurting and she didn’t even know what had happened. She is out of it for now.  Hopefully, she will be lucid in the morning and we can try walking again before she is hit with another 4 hr does at noon followed by the 8 pm dose.  Thursday is not going to be a fun day.   The final dose will be on Friday.

I’m all for getting pooped on if it makes her feel better.  Medically, she is doing amazing and that little heart is beating strongly.

It was wonderful to have a lucid conversation with Zayne at 4 am when she was feeling good.  She wanted to get out of bed and go for a walk.  She still looks like The Borg with her wires and tubes coming out of her body (especially the large, central line in her neck).  We were going to swap going downstairs for a chair in her room, but the nurse did not want to attemp without giving her some Tylenol and Oxy.  After bargening iPad time in exchange for taking medicine, she promptly fell asleep.  Zayne started out by asking for 31,000 movies, but I managed to convince her to take 1 short movie and some learning games.  I am not looking foward to having to give her multiple drugs every day.  Right now, all the blood draws (multiple each day) and most of the meds are easy, because they are just done through her existing lines and IV.

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.