Thursday, May 26, 2011

Dylan's Echo

Dylan had his Echo this afternoon.  It was hopefully his last sedated Echo.  I went into it wondering if they tried doing the Echo with him not sedated if it would work.  Then the nurse laid him on the exam table to get a quick measurement and he cried.  I decided then that it was good they were sedating him. 

He took longer than usual today to calm down after getting the IV for the sedation.  I think it must have bothered him where they had it more this time.  He even complained when they were giving him the medicine.  The nurse did check the site and it was in correctly, so it was just bothering him. 

After the Echo and time in recovery, we met with his cardiologist, who came in carrying a toy car to give Dylan (he hit the jackpot this time...came home with 3 cars, a ball, a new sippy cup and a blanket).  His doctor commented on how happy Dylan was after he went over the results of the Echo and listened to Dylan's heart(he really is getting better about interacting with adults.  He will actually talk to adults now and not cry if they touch him). 

The doctor told us that his pulmonary arteries are getting a little more narrow and so will need to go sometime next month to the cath lab and get that fixed.  Said the main problem with the narrowing is that if it isn't fixed, the vein has a tendency to not grow.  Getting it fixed in the cath lab is relatively simple.  They will take a catheter and go up through a vein in his leg to the narrow veins where they will balloon them open and, if necessary, use a stent to hold them open.  He said that generally it's an overnight stay.  (Not always, but best to plan on it being overnight.)  He obviously still has the leakiness, but his heart is still handling it well.  Russ asked him when we should plan on that needing to be fixed.  He said, "That's the million dollar question."  Went on to say that he would say that the average for it to be fixed would be early teens.  Some earlier, some later. 

After the cath we will talk with his doctor again to see when we need to take Dylan back for his next Echo.  The way he talked today, I assume he will have us come back in about a year. 

Wednesday, May 11, 2011

The Heart World

Dylan has an appointment coming up at the end of the month for an Echo cardiogram.  I'm sure those who have heart kids understand how even though things appear great from our end, there's always the worry that lingers in the background that this time will be the time they say that it looks like it's time for the next surgery, or that things aren't looking as good as they have in the past.  It's not a constant conscious worry, but as the time gets closer it creeps more and more to the forefront and in the quiet moments I find myself thinking about the appointment and wondering how it will go.  Mostly I think of how Dylan's cardiologist said at one appointment that he hopes to get him to 3 before he needs his next surgery and how he will be 3 this summer.  Then I will think of his last echo and how Dylan had the MRI after it because his pulmonary arteries looked like they were getting pretty narrow and his cardiologist said he wouldn't worry about it if he thought he would need the surgery any time soon and would just fix it with the surgery if he did. 

As I think about these things, I think of my ignorance of this whole heart world before Dylan was born.  I was aware that such a world existed.  I have family and friends who are part of the heart world.  I saw their worry and heartbreak and hope but it wasn't until I found myself living it that I realized that I really only saw a small part of it. 

I read on a blog (I wish I could remember whose at this point so I could give the proper credit) recently where the author wrote that her husband said that we live with fear and not in fear with our heart kids.  I totally get that.  I find that when my heart healthy kids are sick that I don't worry about them quite the same as I worry about Dylan when he gets sick.  I'm sure it's easy for others to "forget" that Dylan even has a problem with his heart because he is doing so well and seems so normal.  I think of it every time I help Dylan get dressed for the day and for bed and every time he gets in the bath.  I think of it every time he's sad or hurt and won't let anyone besides me help him and think of how eventually he will need to have more surgery and how hard it is going to be on him (and on me) when he will be in the hospital recovering and in pain.

I think of these things and then I think of how this heart world has really opened my eyes and my heart.  I think of all the women who were at the luncheon and how strong they all are.  I think of Intermountain Healing Hearts and what a great service the group provides in bringing together people who are going through the same life journey.  I know I've said it before, but as much as I wish Dylan didn't have a CHD, I am grateful for the blessings that have come into my life because of it.  A whole world of hope and strength and compassion mixed in with the worry and heartache.  I hope that I have become a better person because of it.

Monday, May 9, 2011

Heart Mom Luncheon

A little over a week ago Intermountain Healing Hearts held its second Heart Mom Luncheon.  Being on the governing board, I had some small part in helping with it this year.  The one last year was so good we knew we didn't want to even try to compete with it so we kept it simple.  Knowing that the biggest part of having the luncheon is to get together with women going through a similar life journey, we made sure to have part of it introductions where everyone could stand up and say who they are, where they live, and which type of CHD their child(ren) has.  We also had a video from pictures everyone sent in of their heart kids and glitter toes for those who wanted it.  Lunch was catered by Cafe Rio (thanks to a member of the group who works for their corporate offices we got a nice discount on the food). 

Each "Heart Mom" was allowed to bring one guest.  I brought my mom.  I know she couldn't hear most of what everyone said, but I'm glad she was there with me anyway.  I hope she enjoyed it as well as I did. 

Even though we didn't try to compete with last year's, I think it turned out every bit as good.  From what I could tell, everyone had a good time.  The introductions part was full of emotion as people described the issues for each child (I was the only one there whose child has truncus), especially for those whose children have passed away.  The parts of the video showing the pictures of those heart angels was also heart-wrenching.

For some reason my computer doesn't want to upload all of the pictures that I took at the luncheon, but I did manage to get these two.  They are mostly of the decorations for the event before people started to arrive.  I'm grateful that we have this group and glad that I was able to help out with the event this year.