Who doesn't love extra parts on their heart?!

Hey everyone!

So, Frankie did really well during his cardiac cath! They gave him some versed before they took him back into the cath lab hoping he would be all chill when they tried to start sticking him. Well, not so much. They quickly learned that Frankie is an extremely feisty SOB and we like it that way! They also learned he's STRONG! That's what they get for messin' with Frank! Anyhow, once they were in there it took about 3 hours in total for them to do everything they needed. They placed Frankie in the CICU (cardiac intensive care unit) just for the night. Not because they thought there was a problem but just because he is awfully complicated! Wouldn't have it any other way. When we got to see Frankie he was sedated. He had to stay flat on his back and his leg straight for 6 hours! Well, we all know how busy the tank is and this was almost impossible! About an hour and a half into it, someone decided to try and wake up and party! They gave him more meds to sedate him and Joe and I gently held in him place for about 45 minutes until the meds did their thing. He wasn't upset or anything, he just sleeps on his sides and kept trying to roll over.

Extra parts you say?! Yeah, we were shocked, too! In a typical heart you have ONE svc (superior vena cava). The svc is a large but short vein that carries de-oxygenated blood from the upper half of your body to the heart's right atrium. Well, Frankie has TWO! Does this cause any issues? No, not in his case. His second svc does the same thing has the first. His blood still ends up in the correct place and is correctly oxygenated it just goes a special path to get there! They both work. Thankfully they noticed this (quiet frankly, I'm not sure how no one has ever noticed previously since we have had a million echos of his heart not to mention several fetal heart echos while I was pregnant) because when they go to do his ASD repair and put him on the bypass machine he just would have been squirting blood all over until they quickly found the problem. It wouldn't be life threatening, the surgeons would just have their panties in a bunch because they didn't know about it and didn't plug it up and it made a mess. But, fortunately, we know now.

Cath results: Frankie's pressures in the right side of his heart are moderately elevated. Typically the pressures are around 30 and his are 50-60. The right side is just working over time. They also tested his lungs to see if they would react to the gases they help lower the pressures in the lungs and he didn't respond at all. Not too sure what the means from here. Most likely that some of the medications they would use for pphn would not work, the inhalants. The cardiologist says that we need to schedule his ASD repair asap. I am awaiting a return phone call on the scheduled date. I asked if I could wait until after his first birthday and they said yes. So, I'm going to try and schedule it the day after his birthday, if possible. Once I have it scheduled, I will let everyone know. When speaking the the heart surgeon, he said that it is okay for them to go through with his ASD repair and that it will help his pphn, not make it any worse. Frankie's hole in his heart is approximately 8-9mm which is giant. His entire atrium wall is only roughly 11-12mm. When they close his ASD, they will be leaving a "pop off valve" (a small hole) that will be 2-3mm. The reason they do this is because his lungs are used to having that extra flow and need to relieve pressure. A lot of times in kids with pphn, they make a small hole. Currently Frankie's lungs receive 2.4 times the amount of blood that a typical child does. So, Frankie's repair will definitely have to be ohs (open heart surgery). They will put him on the bypass machine and his heart will not be beating for about 30 minutes. It's impossible for me not to tear up and get short winded while typing this or even thinking it. He will most definitely have to be intubated for this procedure but they plan to extubate while still in the OR. I pray that they can. Typically, a child is at the hospital for 3-5 days when they have an ASD repair. We were told to plan for 7-10 days. Anything sooner would be a plus! They don't anticipate his body rejecting the repair but there is always a small chance that it will and they will have to open it back up. Since they are leaving a pop off valve, I don't foresee this being a concern. During our stay, we will be in the CICU, at least for a few days and then possibly moved to 7 west (cardiac floor) until we go home. Just depends. I think that's it. If I think of anything else, I will update. Or if anyone has questions, by all means ask away. It was a lot to take in and I'm trying to explain it to the best of my ability.

The aftermath: Frankie is pretty bruised, mostly from them trying to put iv's in. He has a few small scratch looking marks where they went in to his femoral vessel in his thigh and it's also bruised there. But, he has bruises on his foot and hands, wrists from them trying to get iv's. Thankfully he was asleep when they did this, well all but one! 

I've just started rocking and rolling on Frankie's 1st birthday plans today since tomorrow he will be 11 months old! It's hard to believe!

That's all for now! I'm beyond thankful for all the prayers! LOVE YOU ALL!