Wednesday, July 20, 2011

The Last 5 Months

A lot has happened in the last 5 months, that's for sure! Paxton was released from the hospital on February 28th, which happened to be his exact 10 week birthday. Since then he has had monthly cardiologist visits. He has been growing perfectly and developing just like any other baby his age would. This is such a great blessing to us! The cardiologist has even called him "fatso" before. haha! He is currently 7 months old and weighs almost 18 pounds and is about 28 inches long.

March 2011: I took him to his first cardiologist visit about a week or so after his release from the hospital. His repair still looked great and he was doing amazing! At that appointment she did mention one little area about his aortic valve that had some pressure, but she said she wasn't concerned about it at that time.

April 2011: My husband Josh took Paxton to his 2nd cardiologist appointment the 1st week of April. I had just had my gallbladder taken out a couple days before so I had to stay home. :( At this appointment Dr. Madrenero (Pax's cardiologist) said the pressure had risen since the last appointment in March and that if it got worse by next month's appointment or even stayed the same that Pax would be getting a heart cath and that she would share the information with the other doctor's and with the surgeons at the weekly meeting they have. A couple days after his appointment we ended up rushing him to the er because his leg turned purple. He stayed overnight in the PICU, but was sent home the next day. He had great vitals and perfect oxygen sats and they couldn't find any clots. So no reason was given for why his leg kept turning purple.

May/June 2011: Josh and I both took Pax to May's cardiology appointment because we knew there was a chance it wouldn't be good news. At this appointment we were told that the narrowing and pressure was worse. So we scheduled a heart cath for the 26th of May and then we would go from there. Well that appointment didn't happen because Pax, my other 2 sons and I all got sick. Paxton actually ended up in the hospital for a couple days at the first part of June because of it. It took quite a while for us to finally get better. He ended up having his heart cath on June 28th. At that time we were told that he had supravalvar aortic stenosis. We didn't really know what exactly that meant. We were just given pictures of the narrowing and told it would have to be surgically corrected soon.

July 2011: On July 8th we met with the surgeons and were told at this appointment that SVAS is usually seen in kids that have William's Syndrome and they are usually at least 3-4 years old. (We are still waiting on the results from the William's test, but we are all pretty sure he doesn't have it.) It is EXTREMELY RARE for it to occur in a baby. The statistic that I later found on the internet was .05% of CHD kids get it. They were very confused and concerned because they don't understand why he developed it or why he's even still alive. They said he should have died during the heart cath and that even just sitting there she wasn't sure how blood was able to get through. I should remind you that he shows no outward signs or symptoms of any heart issues. THANK YOU JESUS!!

So to make a very long story of the appointment shorter, surgery was scheduled for July 28th. Whew!

Hopefully you were able to follow all of that. :)

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