I reread my email from last night and have come to the conclusion that I should not be sending out emails when I am tired, hungry and my nerves are totally shot. Wow, the spelling and grammar mistakes.
Anyway, I will try and do a better job of explaining what is going on with C now that I am somewhat back to normal and we have more information.
Yesterday all the doctors were thinking C had what is called atrial fibrillation, the very worst kind of arrhythmia. We spoke with the intensivist, the regular cardiologist and the electrical cardiologist. With each conversation the news and prognosis was worse. She had the worst arrhythmia: the hardest to break, the hardest to treat, the hardest to manage, the hardest to get control of with medications. Kevin and I were looking at our worst fear, C not making it long enough to get a heart transplant. That is how very sick she was yesterday.
The intensivist went forward with placing her central line because she needed stable, ready access for her medications that would be delivered through iv. Everyone was on edge. Everyone was very closely monitoring C. No one was smiling. For the second time ever since this journey began, I was scared. Scared we would not be returning home with Carolena.
During the placement of the central line C's heart was tickled when the line was placed. This is completely normal and happens every time. Which is why placing central lines and removing central lines are so risky because the line is going to the heart. One false step and the heart can go into an arrhythmia or stop beating all together. So, when the line hit her heart it actually had the opposite affect and kicked her heart into sinus rhythm. Totally unexpected and "dumb luck" to quote the intensivist. Unbelievably he just delivered the very best news possible. If touching C's heart with the wire broke the crazy arrhythmia and put her back in normal sinus rhythm the possibility of her arrhythmia being atrial fibrillation (the very worst kind) just became almost nonexistent. Holy cow. All the doctors were relieved. Now the all had a better understanding of what was going on and how to treat it.
C did stay in a nice normal sinus rhythm for 8 hours yesterday after being kicked back in. She did receive a dose of medication orally. However, they did not want to give her too much since her blood pressure was already a little low and the medication being given to stop the arrhythmia lowers blood pressure. She did start back with the crazy arrhythmia around 7pm. She got two different medications through her iv and she broke back out of it after about an hour and a half. She did not tolerate this bout as well as she had the previous night. Whereas the night before she was in super fast rhythm for hours and just started looking really crappy yesterday morning, last night it took all of an hour before she looked crappy. Her body and her heart just had enough. She did finally break the crazy cycle again with the medications and went into sinus rhythm. This is apparently another good sign that she does not have the worst arrhythmia.
We saw the same two cardiologists again today. One is a fetal/regular cardiologist and the other is the EP (electrical) cardiologist. Both were a bit more positive this morning. The one cardiologist thinks what C has is called an atrial flutter. Certainly not the best arrhythmia to have but certainly not the worst. The arrhythmia has been triggered because her atrium has been resected twice. There is scar tissue as the part that was operated on heals. This is messing with the signal. In addition I had the cardiologist explain why having heterotaxy makes this all so much worse. My understanding is that C's heart basically has two right sides, instead of right and left. Copies instead of mirror images. As such she has two competing firing nodes. She would have had developed arrhythmia problems at some point in time. We certainly did not expect it to be right now, but she would have developed them.
All the doctors agree that the trigger seems to be the fever that she was running. That on top of the gi tube placement just stressed her too much. But, the fever alone would have triggered the arrhythmia. Everyone has said we are very, very fortunate that we were still here in the hospital when this happened. Had we been at home and this happened we may not have known anything was severely wrong until it was too late. C tolerated the crazy rhythms so well that we may not have noticed until is was too late. She could have had some severe damage.
I did talk to the EP cardiologist and he did tell me that he was upset that they did not call him earlier two nights ago and that they let her go so long with the high heart rate. He said he has already talked to everyone about that. Fortunately C tolerated the long spell with little repercussions. She is still having to receive some extra minerals to bring her system back in balance but should be okay soon.
The plan for now is to keep her on the iv meds. If she breaks into the fast rhythm again then the doctors will manage with increasing the medications to break her out of it. If she absolutely cannot break with the meds then they will sedate her and shock her. Not such a lovely thought as it could go either way but they can do it. C will have to follow up with the EP cardiologist and her next heart cath will be extremely long. She will have two different invasive cardiologists doing their thing and getting the data they need. She will transition to oral medications to keep this arrhythmia in check. Once she shows she can stay in sinus rhythm with oral meds then they will start talking about discharge. She still has a long way to go. Her whole system needs to be brought back into balance and her heart stay nice and calm. She did have an echo this morning and her heart function is still looking really good. The cardiologist showed us exactly what was done during her surgery and how now it looks really good. Her blood flow is really good and her Glenn shunt is working just fine. She has been started back on the Viagra to address her pulmonary hypertension. The doctors are all still saying that her lungs should adjust to the new pressures and relax and she should be able to get off that drug. The hypertension is not something the doctors think will be long term for her. This arrhythmia should be easier to manage as her heart heals and the scarring reduces but there is a possibility that as she gets bigger she will move past this issue. He even said that there is a possibility she will outgrow this arrhythmia or it could be addressed with an ablation when she is older and bigger. I am by no means counting on it and am pretty certain she will be getting a pace maker after her next surgery, the Fontan but just that the cardiologist is talking like there is real hope just makes my whole day.
C is trying really hard to get back to normal. She is eating again and doing well with it. She, of course, still does not take the volume she needs but that is what the g tube is for. The g tube has been placed and is doing well. She is healing like she should and we have run meds and pedialyte through it. She is doing well with that so far. We are also able to vent her g tube (let all the air our of her stomach) which does seem to help with her gas issues. She still has a long way to go on the eating thing as well.
Each day right now is new. What she did yesterday does not affect what can happen tomorrow. Fortunately the doctors are more confident that the medications are working and that the arrhythmia can be controlled that way. We were very close to losing her yesterday. C continues to shock us all, including the doctors. She decides to throw huge curve balls at us and make us think we are dealing with the worst of the worst and then she pops out of it and says nope, this is bad but not the worst. I told her yesterday that she has got to cut it out. She is going to give me a heart attack.
Right now I am not sure how long we will be here in the hospital. Will all depend on C and how her heart handles the medications. She will not be discharged until she is under control. Fortunately I had already asked if we could be moved to a bigger room and voila, a bigger room opened up and we were moved last night. Thank goodness. Now we all have a little room to breathe, figuratively and literally.
Thank you all for all the prayers. Keep them coming because they are working. Through the grace of God, C is still here with us and we have real hope that she will be hanging around for awhile.