Cath Details

So, the cath went pretty well for Hailey today. They found out that she has 8 MAPCAs (blood vessels that come off the aorta and go to her lungs).  5 are on the right side, 3 are on the left. That is a high number of MAPCAs so they told us that the surgery will be 12-16 hours long.  The vessels all look pretty good as far as lung pressures (low pressure is good) but they really have no way of knowing just how big they are until surgery. We need to hope and pray that they are big because the smaller they are, the more difficult they will be to work with. 

After the cath we went to the recovery room to be with Hailey. We were hoping not to be there super long, but we were there from 2:30 to 8:30pm.  Hailey's heart rate just kept going really high, about 160 when she was resting and over 200 when she was crying. They finally decided to give her a blood transfusion to see if that would help her.  It definitely seemed to help because it wasn't until she got it that she was able to get back down to normal levels and her oxygen levels stabilized.  So, that was a long time. They had her on heparin (a blood thinner) to keep her from having any problems from the cath (like her leg turning purple, etc.) so they wanted to put another IV in to put the blood in. They poked her 3 different times and couldn't get a vein. It was so sad and of course Hailey was super upset.  They finally gave up and just stopped the blood thinner long enough to put blood through that IV. It was a long 6 hours. 

At about 8:30 someone came and helped us take Hailey up to what they call 3 West, the recovery wing where she will go when she gets out of the CVICU (Cardiovascular ICU) after heart surgery.  Then, a cardiologist stopped by and then a member of Dr. Hanley's surgical team to discuss surgery.

I had not realized until today that there was a chance Hailey might not get to have her heart fully repaired in this upcoming surgery.  I guess they do what they call "unifocalization" (on the video we posted a couple days ago) where they tie all the MAPCAs together.  Then they run a flow test by running blood from the heart-lung machine Hailey will be on through the newly constructed larger pulmonary arteries.  If the heart can handle the flow running through there without the blood pressure being too high, they will go ahead and patch the hole and put the artificial valve in. If not, they will put a shunt in and we will have to come back in a few months, hoping that the vessels have grown enough to lower the pressure.  I am hoping and praying that they will be able to do the whole repair on Wednesday. It has been such an emotional roller coaster and we are ready to have a little break if at all possible. 

Anyway, we will not really know on that until she comes out of surgery.  The bulk of the surgery will be spent chasing down the MAPCAs, sewing patches into the to encourage them to grow, and tying them into a pulmonary structure that will act as large pulmonary arteries.  Closing the hole and putting in the artificial valve takes about an hour at the end provided they are able to do it. 

One other small tidbit, today when Dr. Peng came in after the cath and talked to us I mentioned the left arm blood vessel that has been affecting Hailey's esophagus. Apparently they had not been told about that problem, so they are trying to get one of their radiologists to look at the CT scan we had done in Salt Lake. If they can't get a good enough idea from that they will be doing their own CT scan tomorrow. If they do that, Hailey will just stay in the hospital tomorrow night too.  They were very glad I mentioned it and so was I!

On a happy note, Katelyn turned 3 today and Abby lost her 1st tooth. I was very sad not to be there for those milestones, but everyone did a great job making those things special for the girls.  I so appreciate all the love and support we have received from all of you.  Thank you for your kindness and especially for your prayers. They are carrying us through. 

The pictures are of me with Hailey waiting for anesthesia and in her little surgery gown and then an after picture. She was totally exhausted as you can see.