Today has been the toughest day so far. I thougt last night was bad but today, today was so much worse.
The morning started with waiting for all the doctors to get here and look at C and try to figure out what was going on and get a plan to help her. Fortunately the doctors were all on time this morning and we did not have to wait long for the to evaluate C.
What is happening as best we know is that her atrium is not firing right. Most likely cause of the problem lies in the 2 surgeries she has had that damage/scar the atrium. Her heart is very angry right now and is responding in kind. Unfortunately this electrical issue is common with these surgeries and is almost guaranteed with kids like C who have heterotaxy on top of everything else (and pretty much where we were headed post Fontan). The way I understand this is that the signal being sent from the top of the heart to the bottom of the heart is not making it there. It keeps looping around the top of the heart instead of flowing down where it needs to. She is receiving two different medications to try and keep her heart beating and firing correctly. One actually lowers the heart rate, causing the heart to not beat as fast. The second medication is a blocker that tries to block the signal from going in the loop.
So, to take this from the beginning here is how it has all gone down today:
The intensivist came in and gave me some info and let me know his plan. He was going to sedate her and place more permanent lines (ie central line) so she would have good and stable access. Which is critical right now to run all these meds and fluids and such through. He was going to place an arterial line as well but decided against it. That may change tomorrow. The arterial line would become necessary if and when the doctors decide she needs a much more accurate way to read her blood pressure.
Then I saw the regular cardiologist on rounds this week. He was saying what he though it was and how to treat it. He was actually pretty positive and upbeat and I though for a minute maybe it would not be as bad as I thought.
Then I saw the cardiologist who specializes in the electrical issues with the heart. He was not at all positive. Not a bit at all. He explained that what he say was the worst possible rhythm, the hardest one to break and the least likely to respond to treatment. He was basically saying C was dieing and that all that was left was transplant because her heart was failing.
Kevin and I were somewhat shell shocked.
So. we left it at that and went outside to wait while the intensivist placed her lines. We were so upset and stunned and we left knowing there was a chance she may not even make it through the line placement because the sedation she needed for it just became so very risky.
Kevin decided to call and talk to C's main cardiologist to get his opinion. He also got in touch with the fetal cardiologist we really like to get his opinion. After speaking with the fetal cardiologist we felt slightly better but still not sure of where things lie.
Then the most amazing thing happened. The intensivist came out to say the lines were placed and he said when he placed her central line he "tickled" the atrium of the heart and her heart broke the crazy rhythm and went into sinus rhythm (beating nice and steady and normal, firing just right). So amazing. I hugged him. Of course this is not the end. She could still flip back into the crazy rhythms. She remained in a nice sinus rhythm for about 8 hours with little medication and then she flipped back to the crazy rhythms around 7pm.
Kevin called me right away and let me know what was going on so I was prepared when I got here. I was hoping that just maybe she would stay in a nice rhythm but as with everything else we cannot get too excited by one good thing.
C has been given the iv medications now and she is going between the nice normal rhythm and the super fast crazy rhythm. We also saw the other electrical cardiologist and he was a little more positive about what we are looking at and what we can expect. He did not think this is the super bad rhythm and thinks that she can be controlled with medication once we get the right combinations. She has to be in a nice normal rhythm and also not bottom out her blood pressure. Very delicate balance.
C is fighting really hard right now. These crazy rhytms and fast beats are stressing her heart and her whole system. She looks awful when she is in the bad rhythm and she just has no choice but to pass out. Watching her struggle all last night and now again tonight is horrid, I just want to hold her and make it all better but she has a long way to go before she can even stabilize. The EP cardiologist has said it will be a very long night with lots of ups and downs. The nurses and doctors will be very closely following her so she can will be in perfect balancewith all her other stuff.
C will be in the hospital for several more days at the very least. The prayers we need most strongly right now is for this medication to work and for C's heart to respond. She has got to be able to stay in a nice rhythm.
I know I am not explaining this as well as I would like but I am tired. Just so you all know I did go back to my mom's apartment when C was stable and did get some sleep. I will try and update more later once I have had some more sleep and I can actually think clearly. We are in for a very long, long haul and will be seeing a lot of the electrical cardiologist as well.
Outside of the intensivist (who, by the way, if you all have not heard....I LOVE HIM!) breaking her out of the crazy rhythms this morning the best news was that the EP cardiologist was actually talking about her her stabilized and getting her home and getting her fattened up for her fontan.
Please keep the prayers coming and I will try to forward some pictures soon.