Wednesday, April 11, 2012

Cath Day

So yesterday we brought C back to Tampa for her pre-Fontan and electrical study heart cath. I have been dreading this day for so long. One, I did not want to get bad news and two, I knew once this was over she would be going into surgery the next day.

We were originally told to be at the hospital at 6 Tuesday morning. The time then was moved to 10am. By the time they were ready for her it was 2:30pm. Not unusual to get bumped back but makes for a very long day especially since we were already prepared for the cath to be very long.

C did great through the cath. She had no issues or problems and came through with flying colors. She had two different things done.  The first was the diagnostic part to see if she would be a suitable candidate for the Fontan surgery. I was not super concerned with this part but was overjoyed when the doctor came out after about an hour and a half and was done with his part saying and I direct quote here, "her numbers are not just good, they are excellent." One of this doctors main jobs during the cath is to measure the pressure and resistence in her lungs. The lower the pressure, the better. He also brought us pictures showing us her wide open Glenn and her wide open pulmonary veins, where they come into her atrium. This is especially good news since blockage of this veins is what wil lead to pulmonary hypertension and even worse, double lung transplant. Oh the joys of this stuipd heterotaxy syndrome. However, overall the diagnostic part of the cath showed that C is ready and able to accept this next surgery.

Now for the bad news. The electrical study. This is the one I have been so nervous about and apparently, rightly so. The second doctor came out to talk to us when he was done and the news was not super great. Not only does C still have her arrhythmia but she has several arrhythmias. Ugh. The EP doctor was able to induce and map 2 atrial tachycardias and was able to ablate these. However, he also saw a couple more atrial tachs that popped but disappeared quickly. He said he saw them for maybe 2 to 3 seconds apiece. He also saw atrial flutter. Now here is the really bad news. He waz seeing the arrhythmias from "healthy" side of the heart, ie the side of the heart that was not operated on and has no defect or scar tissue. C's healthy tissue is producing the problems. They do not know why this happens and this is an area still being studied to figure out why a single ventricle atria will produce electrical issues in the healthy tissue. Yeah, it is that awesome.

Now for the somewhat good news. The doctor was able to ablate (burn) the areas he could map and he said it should take care of them. He spoke with C's surgeon yesterday and asked him about putting a freeze on the area where the flutter is coming from, again the healthy tissue in the atria. The surgeon said that due to C's make-up, he would not need to freeze that area as he would be removing that tissue. Both doctors agree this should help with the flutter. I really hope so as the EP doctor said C did not tolerate the flutter very well at all. Her blood pressure dropped and she was getting close to a danger area. Other good news is he said after he ablated the atrial tach areas and then revved her heart up and did some slight pacing he did not see any other areas pop up. But again we are in a wait and see as he did say in heterotaxy kids with single ventricles he has seen where the atrial tachs keep moving around. He will burn one area and then it will pop up in another area until he is chasing the thing and burning her whole atria which is not good.

Now some additional good news. This EP doctor did his fellowship study on this very issue and he said his research showed that kids who have the opposite of C, a slow heart rate, had the worst overall long term outcome. The next group was the kids who have ventricular tachs. Kids like C with atrial rhythms and super fast heart rates did fare better in the long run. We will see. He folowed all this up by saying he just has a hunch that C's heart is going to remain stronvpg for a long time. I was grateful for that.

Right now he is thinking he does not want to put C back on meds for the arrythmias. Especially while she is in the hospital he wants to se if she can go without them. He is very encouraged by the fact that C has done very well over the last few months without the heavy hitter arrythmia drug Amiodarone and done well without any drugs the last three days. We will know more after surgery and during her recovery. What I will be praying for most at this point is that as C gets bigger she will outgrow these issues. This is a possibility. Not the probable way but a possible way.

Kevin stayed with C last night in the hospital. She did well. Groggy but did start perking up. Poor baby was so thristy she sucked about 4 ounces of water off a little sponge. Kevin also fed he some pears last night as well so she would have a little something in her tummy. She slept right up to the nurses moving her down to the holding area to go to the OR for surgery this morning. She was pretty calm and did not really fuss or cry. Now we wait and hope and pray that this surgery goes well and she has a fast and complication free recovery.


Angel Biagi said...

Thank you for the status..its hard to completely know what she & you all are really going thru ..I just can't imagine. I admire ALL of your strengths..our prayers & thoughts are flowing to you & I'm keeping a close eye on fb today for updates. Love you cuz. *hugs

Lizz said...

So glad things look better for C. I pray the surgwry goes well and she will soon be home again with you allO
Stay strong. I know you have a great support team. Waiting to hear mpre good news after surgery. XOXO

Lisa said...

Ashley, I can only imagine what these days have been like for you. Know that there are a lot of people out here cheering your family on. We share your hope for a fast and complication free recovery.