Back Home From the Cath Lab

We did make it out of there by 7PM, which included six hours in the recovery room with Muriel.  Home by 8PM; had time to get our other girls to bed and watch over her... she seems completely normal - as if she hadn't actually had fifty needles stuck in her today.  Gave her an infant dose of Tylenol anyway.  If she is hurting at all I want her to have some relief.  She has slept most of the evening - I am sure she needs it.  Other than that we did not come home with any special meds or instructions.

The results of the tests were mixed in my opinion.  Good news first - the pressure in the lungs is lower than the pressure in the heart by a good margin, so the Pulmonary Band is doing what it is supposed to be doing, and her lungs don't appear to be in any immediate danger.  In fact the doctor who worked the catheter today is going to recommend we put off the next surgery for several weeks if not more.  Her oxygen saturation is good, and everything seems ready for her Glenn procedure.

Now for the bad news.  The reason they had trouble getting the catheter in her thigh is due to the fact, just discovered (and I will likely get some of these comments wrong... more to come as I better understand the situation) that her femoral veins - in both legs - don't run "cleanly" up to the Inferior Vena Cava (IVC), i.e. the heart.  I started to try to link "Interrupted Inferior Vena Cava", but the Google returns are all so ridiculously technical I didn't think it was worth it.  Feel free to research!  I'll attach the X-Ray pictures in the morning, but looking at them you can see they start curving and branching out.  Apparently the return blood is getting there eventually, but is being dumped into the Superior Vena Cava (SVC) instead, which is actually a potential boon.  This means that when the Glenn procedure is performed we will be collecting the blue blood not just from the upper part of the body, but also at least the legs, and sending directly to the lungs via the Pulmonary Artery.  I immediately jumped to the conclusion that we wouldn't need the Fontan (the last procedure that will complete the series, by connecting the IVC to the Pulmonary Artery).  The doctor quickly corrected me - it seems that at least her organs are still returning blood via the IVC, and the Fontan will definitely still be required.

They also had trouble, again, getting an IV in her hands.  Her poor hands have at least ten puncture wounds from the attempts.  In the end they got it working in her right foot.

These two challenges have led the doctor to suspect a larger reason that even encompasses her heart defects.  We talked (very) briefly about "Heterotaxy Syndrome", which based on the Wikipedia link can include "Transposition of the Great Vessels", "Ventricular and Aterial Septal Defects" and vascular anomalies such as "Interrupted Inferior Vena Cava"... ALL of which she has.  We shouldn't be too quick to accept this yet - it is just a theory that needs more digging, which will likely include more detailed echo tests focusing on areas other than the heart.  This condition apparently often affects the placement and function of other major organs, and to date I don't know that we have looked too closely at them.  That is probably being unfair to the many teams that have been running tests on Muriel, however.  We have certainly had numerous echoes of the rest of her abdominal cavity and nothing odd has been noticed so far - at least not that has been communicated to us.  I'd like to believe - at least for now - that the combination of the anomolies found thus far is simple coincidence, and not symptoms of a greater overall problem.  She doesn't need any more problems.

The next bit of news will be the date for her Glenn procedure.  All the cardiology teams in the area meet every Wednesday at a conference, and they will do so again tomorrow.  Muriel will be one of the topics, and her surgeon should be making the decision on when to perform the surgery very soon.  We hope to know this week when to plan for it.  Of course I will keep the blog updated as we get more information.

Thanks for all the support as usual, and please keep Muriel in your thoughts.

Jeff and Megan