Monthly Archives: July 2015

Zayne was sprung from the hospital just 7 days after receiving a new heart. She was ready to go home on Saturday, but the docs were trying to regulate her anti-rejections meds. Her meds will continue to be adjusted over the next few months.  I spent most of the day in training – how to care for Zayne, chest incision care, and med training. As I have learned in during this hospitalization, you have to remain vigilant. I discovered an error in the medication chart that was given to me as my “guide” for administering the correct dosages to Zayne.  We have two home days before we have an early appointment at the hospital on Thursday for a blood draw.

Zayne’s appetite is definitely on the rise.  She is still a picky eater, but I hope she can expand her diet a little at a time.  For her home dinner, Zayne requested Salsa Nakes (cheese quesadilla that are cut into snake like strips).  She ate more than I have ever seen her eat.

With her increased energy is increased obstinance and stubbornness, i.e., she doesn’t listen any more.  What’s up with that?

Zayne is more than ready to be discharged.  She is running up and down hallways, walking all over the hospital, playing outside, jumping, and not needing a nap. Zayne told me that she likes her new heart, and keeps saying    “I’m not even tired”

Nurses thought we were being discharged today, since she is ready.  She is not on any monitors during the day, and has minimal hookups during the night.  She should be discharged on Monday (that is Postop Day 7), but needs a blood draw at 7:30 pm and meds at 8 pm.  I’m not sure if they will let us go late, or keep Zayne for another night.  The doctors need to regulate her anti-rejection meds and check her renal function.  After Zayne is discharged, she will need to be back in the hospital 2 days every week for blood draws and checkups.  Her little finger is still really sore from this morning’s blood draw.

This evening was the easiest meds, yet.  She takes each med syringe with a pre-sip of Hershey’s syrup, followed by a chaser of syrup.  I have to play rocket ship with the syringe, so will take the medication.  Right now, she gets 5 different medicines each morning, and 3 at night.  This doesn’t include the swish and spit medicine to prevent thrush that she has to take 3x/day.  She gets a special weekend antibiotic at twice a week that will be administered every weekend.

The hope is that she will be off all medications except the 2 main antirejection meds after 3 months.  The antirejection meds need to be taken for the rest of her life (or until technology has something new).

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.