Cardiac Crisis

After Mighty Z had her loop recorder placed on her heart I felt relieved, relieved to know that if Mighty Z’s heart was pausing, now we would catch it. The first month that we downloaded her loop recorder through the telephone lines, I received a wonderful call from the EP (electrophysiology) nurse saying Mighty Z’s heart showed no signs of pausing (whew). The same with the next month when I downloaded Mighty Z’s loop recorderand I felt like we were on a roll, until Mighty Z came and told me she had had another episode.

 

 I know what you’re thinking. Why wasn’t I there when this episode happened and what is  an “episode?.”Sometimes, not all the time, Mighty Z will faint -- it is very random and you have no idea when it is going to happen or what triggers it. Since Mighty Z is twelve, she hates when I follow her around like a lost puppy and, let’s face it, it gets annoying for both Mighty Z and myself.  So, I let her walk around without me tagging along after each step. Mighty Z told me this “episode” was not a bad one, it was just a little episode. However, being who I am, I quickly downloaded Mighty Z’s loop recorder and waited once again for the EP nurse to call. Waves of dread came over me because I knew Mighty Z’s heart had paused, and I knew that it meant she would have to have a cardiac pacer implanted. This was confirmed when the EP nurse called and said that Mighty Z’s heart had paused for 4 seconds and then again for 5 seconds. Knowing what I know, that was almost double the legal limit for a heart to pause, so I waited to have confirmation from her cardiologist. Within minutes Mighty Z’s cardiologist called and told me the heart-breaking news, that yes indeed, Mighty Z would need a cardiac pacemaker implanted.

 

 

 I always knew that it wasn’t IF Mighty Z would get the cardiac pacemaker, but that it was WHEN. When would Mighty Z’s heart stop? And would I be able to catch it in time to save her life? I will confess, I put on a brave face, called Mighty Z’s daddy, and both grandma’s and calmly told them that Mighty Z’s heart was pausing and that she would need to have a cardiac pacer implanted. My voice was strong with no waver to it as I called each person to relay the news. It wasn’t until that night when the tears started coming and the fear and anxiety started to wash over me. I first got mad at myself, because you see, I knew Mighty Z’s heart was pausing and I kept pushing the cardiologist to listen to me. As I lay in bed and cried, I felt like I had gone on a witch hunt looking for Mighty Z’s heart to pause and I finally found a witch. Yes, I know completely irrational, however Mighty Z was going to have to endure so much more and I wanted to spare her this, even though I knew this was so important.

 

The cardiac pacemaker surgery was set for the next Monday and I was ok until the Saturday and Sunday before. I had to breathe through those waves of fear and anxiety as they attacked me over and over again.

 

When Monday morning came, I bravely packed Mighty Z and my bags and headed up to Children’s Medical Center of Dallas Texas to be admitted. Once through admitting, we were brought back for pre-op, and Mighty Z was given what I always call a cocktail (a mixture of 2 vials of Versed and 4 vials of Lortab, in what looks like a shot glass). With Mighty Z already on her breathing pacemakers, I felt confident that she would be fine, however once she fell asleep, she needed to be bagged (an ambu bag is a hand-held device frequently used by trained professionals as an essential part of resuscitation to provide positive pressure oxygen to a patient whose breathing is insufficient, or has ceased completely. The act of using the device is frequently referred to as bagging. The ambu bag has a long tube that connects directly to an oxygen outlet or tank to force 100% oxygen into a patient’s lungs). For a couple of breathes the EP Nurse and I worked on Mighty Z and then Mighty Z was able to breathe with the breathing pacers , with just a bit of  oxygen to help her. Even though that was a bit scary, I still felt comfortable with the cardiac surgery. The surgery lasted for about three hours and the EP surgeon came out and told us that Mighty Z did great and that we could see her in recovery. When her daddy and I got to recovery, Mighty Z was responsive, yet groggy. Her oxygen levels were great without the need to supply extra oxygen.  The only issue was that Mighty Z’s blood pressure was going crazy -- at some points it was reaching 160/102 and then dropping to 74/50 (normal blood pressure is below 120/80). Mighty Z’s heart rate was spiking to 180 and then dropping to 50 and each time it dropped to 50 we could see on the monitor Mighty Z’s shiny new cardiac pacemaker go off. The cardiac pacemaker went off a total of nine times just in the first hour after her surgery.

 

 

 

Then things started unraveling quickly…Mighty Z started needing oxygen -- not just a little bit -- we are talking 5 liters of oxygen and then Mighty Z’s daddy noticed that her breathing pacers were not breathing for her like they were designed. Quickly her daddy and I began to work on Mighty Z. We changed the antennas to her breathing pacers, then we repositioned them, and then we realized Mighty Z was not breathing at all. I called the PACU (post anesthesia care unit) nurse and told her Mighty Z was not breathing.  Quick as a flash, the PACU nurse started bagging Mighty Z as I hyper extended Mighty Z’s neck and held the mask securely to her face. The PACU nurse then called the attending in the PACU, saying that Mighty Z was unresponsive and not breathing at all. The attending came over and started bagging Mighty Z and had the PACU nurse call the CICU (Cardiac Intensive Care Unit) doctor and have him come down STAT!! The CICU doctor came down and bagged Mighty Z for 30 minutes and then magically her breathing pacers started breathing once again for Mighty Z, however Mighty Z was still unresponsive. The CICU doctor gave her six shots of Narcan (a narcotic reversal) as the CICU nurses pinched and prodded Mighty Z’s little body to get some sort of reaction out of her. It wasn’t until the 6^th shot of Narcan that Mighty Z finally opened one eye.  We tried to keep her responsive without much luck until several hours later. Finally at 9:30 pm, Mighty Z was able to wake up and talk, although it took tons of stimulation from her daddy and I, and unfortunately that lasted for only thirty minutes until she once again feel into a deep sleep. She was still requiring five liters of oxygen for the rest of the night until she woke up the next day, still very groggy and blessedly with no idea of the trauma her little body endured (I praise God for that).

Three days later, Mighty Z was back to her old self and the doctors felt comfortable with Mighty Z coming home and of me taking over her care. Since the anesthesia during surgery, Mighty Z has not had a drop of pain medication, simply because we are all afraid that she would once again go in to a drug induced coma.

 

 

 So to answer the obvious question, “What happened to Mighty Z and why did her breathing pacers stop working, then all of a sudden start working again?”  The answer is simple, the anesthesiologist gave Mighty Z Fentynal on top of the Versed and the Lortab  -- it was too much for her little body with all those drugs racing through her system. It made Mighty Z unresponsive and her CO2 levels go through the roof and made her body go into  respiratory acidosis, which basically paralyzed her muscles since the breathing pacers make the diaphragm (and the diaphragm is a muscle) expand and contract.  The acidosis was not allowing her diaphragm to move even though the breathing pacers were telling the diaphragm to move -- the more the doctor bagged Mighty Z and lowered her CO2 levels, the more the breathing pacers were able to make the diaphragm expand and contract. The Narcan reversed the overdose of anesthesia and made Mighty Z responsive again.

 

I am sure you are overwhelmed with this blog post as I was living it.   If it weren’t for Mighty Z’s daddy, the PACU nurse, the attending PACU doctor, the CICU doctors, nurses and I…well, this blog post would have been completely different or probably not written at all. Many times I forget how fragile Mighty Z truly is and what a Mighty Miracle she is to all of us.

edited by Linda Kruger

01 02 12

Drops of Sunshine

The last three months have been drama filled. We have gone from being told that Mighty Z has Hirschsprung’s Disease and will need a colostomy bag, to begging the surgeon to do a pull- though (where they cut out the dead part of the colon and reattach healthy part of the colon), then to being told that Mighty Z doesn’t have Hirschsprung’s Disease but that she may have Mitochondrial Dysfunction. To say it has been a rollercoaster of ups and downs is an understatement.
 
Just when you think life is looking a little grim and waves of anxiety are washing over you, someone drops a bit of sunshine into your life.
 
When Mighty Z was in third grade, she had to do a fine arts project. When I asked her “What do you want to do?”, she grabbed her piano bag and pulled out a piece of music called “Teddy Bear, Teddy Bear” and proudly proclaimed that she wanted to do her project on the person who wrote “Teddy Bear, Teddy Bear.”
 
With a click of a few keys Mighty Z and I found the composer, Timothy Brown. I decided to send him a quick email in hopes that he would respond so that we could print out the email and attach it to Mighty Z’s project board.
 
Not only Did Mr. Brown respond, he was flattered that Mighty Z would choose him to write about. I wrote back and explained that Mighty Z had CCHS (Congenital Central Hypoventilation Syndrome) and was on life support machines 12 hours a day. His response was “Where do you live? I would love to come to the Fine Arts Fair.” I was floored that he would want to come to a little 3rd grade Fair, but of course I sent an email saying we were in Dallas and guess what?? He lived not too far from Dallas!
 
Mr. Brown graciously came to the Fine Arts Fair; he also played for the school and made Mighty Z feel so special. I can’t tell you the tears that ran down my face when Mighty Z slipped her little hand into Mr. Brown’s hand as they walked together to see her project.
 
As the years have gone by, I have sent Mr. Brown Mighty Z’s National Piano Guild Audition results and he has encouraged her on so many levels to continue playing her piano and never to give up.
 
A couple of months ago Mr. Brown sent me an email asking for Mighty Z’s piano teacher’s name and phone number, and saying that he had a surprise for our sweet Mighty Z.  Of course I sent him the information and honestly forgot about it because of all the medical stuff we have had to endure lately.

I dropped Mighty Z off at piano and Lala and I wasted time waiting for Mighty Z’s lesson to end. Mighty Z came skipping to the car with her piano teacher close at hand. Mr. Brown had composed a song for Mighty Z called “Just Believe”!  Can you believe he would do that for Mighty Z? I was shocked into silence that such a great man as Mr. Brown would sit at his piano and write a song for my sweet baby. In some ways I am still overwhelmed that he would do this, and Mighty Z?  Well, she is on cloud nine and cannot wait to learn how to play it. Here is a video of Mr. Brown’s sweet wife playing Mighty Z’s song. Personally I think it is beautiful, and the name of the song couldn’t be more perfect for our amazing Mighty Z.

 edited by Emily Minch01 02 12