The last few weeks we started to notice Xyler having some symptoms that were concerning.  A couple of weeks ago we decided to take him down to Primary Children's(PCMC) ER and have him checked out since they have a cardiologist on call.  It was my hubby's weekend off and that is why we decided it would be a good time to take him.  Xyler had been acting different and had become whiny and clingy.  His face started looking puffy so I was worried that he was retaining fluid.  My hubby fed him a bottle on the Saturday that we took him to the ER, and he started sweating while drinking it.  These are all not very good signs. 

At the ER they took an x-ray and compared it to his last one, which was in September.  They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time.  When they weighed him it showed that he had gained over 1 lb in less than two weeks.  I know this because he was weighed at his 1 year check up less than two weeks before.  They sent us home and told me to follow up with his pediatrician and his cardiologist.  I left there feeling uneasy.  I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.

The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold.  He ordered an x-ray and some blood work.  He also talked to Xyler's cardiologist to see if there was anything else he wanted done.  The BNP blood work was elevated.  I was told this meant that he had congestive heart failure.  We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.

The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him.  Xyler had the echo yesterday.  We found out that there is a problem.  The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries.  They figure it is from scar tissue.  This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it.  His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option. 

I am hoping to find out today their decision.  I am going crazy while waiting.  Either option is scary but the cath lab is the easier route.  I am just hoping for good news.  It is so hard to have to watch my child go through this and feel so helpless.  To have to hold him still while they try to put in an IV and have him screaming the whole time.  I can't bare the thought of Xyler having to go through another procedure so soon.  At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery.  I just want my child to get a break.  To get to be a normal child with his heart working fine with no problems.  You wouldn't think that would be too much to ask for but in the heart world it seems like it is.  It is so hard and sad to see so many heart kids who have one issue after another.  These kids go through so much and are so strong.  I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.

One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough.  I am so thankful for his ped. doing more to make sure nothing was missed.  If this wasn't caught so many other things could have been damaged because of it.  I am thankful it was caught and can be fixed.  When we find out how it will be fixed we will go from there.  PLEASE...let them tell us soon.  I hate the waiting!