As I began to type this blog update I realized that today was Alexa's two month anniversary since her Rastelli surgery! She has come a long way! Alexa had an echo and cardiology appointment this past Monday, April 19th. I was a bit nervous, since this echo would give us a lot of insight to how her heart is performing with the repair now that it has had some time to heal. I was nervous too about how well she would do staying still for the echo since she does not like any docs doing anything to her and being still is important for good images. When they started she she did begin to cry and fuss but then she settled down and remained surprisingly still for most of the echo as we watched Elmo go on an adventure.
The week before I decided I need to try out the new pacemaker home monitoring equipment. I did a test and sent a transmission. This is what the pacemaker and the monitor look like.
I read all the directions and then played with it off pretending to put the antenna which is like a computer mouse on me, then on a teddy, then on Alexa. Overall, it was pretty easy but I had a hard time getting it to pick up reception but finally it said it went through. It collects all the info from her pacemaker and sends it directly to her cardiology office where they can check it and read the results.
Now back to the appoinment. Dr. P was taking a while to come and see us and I was getting a bit anxious about the results. When I saw him walk in with a smile I felt some relief. These are all the good things I remember.
1) Alexa grew two and half inches in 6 weeks!!! Simply amazing!
2) Alexa's pulmonary conduit pressure are nice and low, same as before about 24.
3) There is absolutely no leaking coming from the valved pulmonary conduit! Dr. P said sometimes
these can begin to leak even 3 days after they are placed in surgery. A leaky valve could eventually
pose a problem for the ventricle. So no leaking is fantastic!!
4) Although Alexa is still in complete heart block, I learned that the lower part of her heart has
begun to compensate for the lack of electrical impulses it would naturally receive from her AV
node. Before when they lowered almost wanting to turn off the settings on her pacemaker, there
would be no underlying heart beat of her own at all. She was 100% dependant on the pacemaker.
Dr. P was pleasanlty surprised that when he lowered her pacemaker she is now able to generate her
own her beat independent of the pacemaker or the AV node!!! I didn't even know this was possible!
I thought it was really impossible because of the heart block situaiton. But he explained that every cell
in the heart is able to generate a heart beat. Before the cells didn't have to do that job because they had
the signal from the AV node to tell them when to beat. But since her AV Node has now been silenced
pretty much forver, the other cells decided to take over, although they cannot or have not generated a
normal pulse at this point because 47 beats per minute is very low and anybody would be feeling very
weak, sick and tired, fainting, dizzy etc. but it is WAY better than 0. If for some reason the lead
connected to her heart were to become detached it would give us enough time to get to a hospital
where they could help her! The doctor was very relieved about this and of course as her mother I
was/am extatic! I hope and pray that it only continues to get better and stronger.
5) Dr. P also mentioned that the amount of energy that it takes the pacemaker to generate a heart beat
in Alexa's heart has also diminished. This is good because the least amount of energy it uses the longer
the battery will last and not need to be replaced.
6) Another good thing was that he also adjusted how the pacemaker reads the information. He mentioned
that Alexa's Sinus node (the body's natural pacemaker) that decides how fast or slow your heart needs to
beat to keep up or slow down with you, is working great! He will now allow the pacemaker to
completely follow her lead and set her pace since it has been working great!
7) One small downer at this point is that he noticed some small amount of scaring/stenosis of the conduit at
the very top where it connects to the rest fo the pulmonary brach. Think of the pumonary arteries as a
letter T , the conduit is the vertical part and this was connected during surgery to the horizontal part of
the letter T remaining parts of the pulmonary braches leading to the lungs. He said right were it connects
at the top there is a bit of stenosis. Very minimal, not a problem at this time or in the near future. He
said if it were to become a problem they could always go in via a cath to stretch or balloon that area
buying extra time.
8) He also took Alexa off her Lasix meds, so she is now only taking a baby aspirin daily!
So as you can see, so much good, no, GREAT news!!! I am so grateful for it all!!!
I did ask him what he thought about her getting earings and he said she would need antibiotics because risk of infection could travel to heart. I told him it's okay then, not worth it. We will deal with that when she asks for them. Also needing antibiotics if she gets her nails done. Thankfully I don't like acyrlic nails and will promote my daughters own natural beautiful nails so hopefully this won't be too much of a problem.
We go back for a pacemaker check in 3 months! For the first time since going to that clinic, they told me that the scheudle is not open that far ahead to call next month to make an appoinment. Now, I did notice that this week Alexa has been pretty pooped out by 8 p.m. normally she still had energy to keep going until later. So I'm not sure if this is related to the changes in the pacemaker or she also had a small cold this past week and maybe her body is just more tired from that. I am keeping on eye on it though.
Dr. P said Alexa was doing very very well! He said that her biggest hurdle was behind her. She climbed the hardest mountain already which was getting past the Rastelli surgery. He said there is no reason why she cannot grow up to have a happy normal life and he even mentioned her being able to have children if she so desires, when she get's older. I told him I had always been afraid to ask him that. But it brought tears to my eyes. I already see how she gravitates to baby's and cares for her dolly's being such a little mommy! So when he mentioned that, it was just too much for a heart mom to take. When you begin this journey, you always begin with fear, fear of the unknown, fear of what this means for the dreams you have for your child and their own dreams. This past appointment was a blanket of hope over me. A reaffirming of my faith and my strength and our future together. I know challenges still lie ahead but I really wish the scared pregnant mom I was when we first heard the words CHD could have been at this appointment with me, maybe it would have still felt like we were in the middle of a blizzard but this appointment would have been a beacon of hope. A cup of warm tea, cozy blanket and fire on a cold winter's night.
"When you come to the edge of all the light you know
and are about to step into the darkness of the unknown,
faith is knowing that one of two things will happen.
There will be solid ground to stand on or you will be taught to fly."
-Author Unknown
