I got some better news after talking to our cardiologist yesterday. When Jax had his AV canal repair they missed a VSD, so he still has a hole in his heart. Well the Dr. thinks that his pressure being so high on the right side of the heart is causing blood to shunt through the hole right to left. Meaning unoxygenated blood is going through the hole and being pumped into his body. The good news is it doesn't really make Jax work harder to breath, it just makes his sats lower. So the probability of him pooping out before Friday is small. He is working harder than normal to breath, and the reason is these dang plureul effusions that are back. The only thing that would put him in the hospital before Friday is if they get too big and they want to put chest tubes in and see what fluid comes out. Otherwise we wait until Friday for everything to get done.
Last night we got the great opportunity to take the boys to the Dew tour with Hopekids. I highly recommend looking online and seeing if there is a hopekids in your town. Their nationwide and its a group for families with kids with life threatening illnesses. For us its more for our other boys than Jax. As you know money is tight with medical costs, and the other boys always get left out when your time is consumed with a sick child. With hopekids we see all the kids movies that come out for FREE. Plus other fun things that are free. Its been a lifesaver. Go to hopekids.org and check them out.
Anyway, if you don't know the Dew tour is like the X-games. Its skateboarding, BMX bikes, and dirt bikes. Of course I knew my boys would love it.
They boys watching the skateboarding competition. 
Then outside the boys got to ride dirtbikes themselves. Here's Carter getting ready.
Mondo's turn next.
17 comments:
Sounds like the hopekids is a good thing! I will definately check it out! You sound like me a lot lately, of emotions of a roller coaster. I can tell from your blog posts. I really hope that something can be done with Jax on Friday! He will be in my prayers as will you!
whew!
I'm glad you got some better news. Hopekids looks great - I'm glad the boys had a great time out - it looks awesome!
The Dew Tour looks fun. We joined HopeKids last month but haven't been able to make it to any events quite yet. Glad most of team Jaxson will be able to make the Buddy Walk. If the doctor tells us that Max shouldn't be around crowds yet, I'll probably just take Piper.
Looks like the boys had a great time. Keeping Jax in our prayers.
Your boys look like naturals - maybe they should take up the BMX thing! Glad you had fun and that you also got some better news for Jaxson. Hoping you can stay out of the hospital until Friday!!
We've been following your blog for a little while now and are glad to hear you got some better news. Jax is such an angel. We wish the best for him. Your family will be in our prayers. It looks like you had a great time at the Dew Tour. I bet your boys loved riding the dirt bikes. Our boys sure like it.
I am so relieved! I am so glad your boys enjoyed that! How cool is that!! I look forward to seeing your boys at the buddy walk! We'll keep praying for sweet Jax!
Best of luck to you! Glad to see that you had some better news today. Hopekids sounds great. I am glad you the boys were able to go-i am sure they had a blast. Wysdom's sister get's left out a bit with all our medical stuff..so I totally get it.
Will be thinking and praying you and Jaxon.
Yeah for the better news and AWESOME on the boys night out. Very cool.
This is Joyce trying to catch up on the week. So glad the brothers had fun at the Dew Tour. So cool they got to ride:) So Friday is the day it looks like. I sure hope they can give some relief to Jax and you. We will certainly be praying. Hang in there.
Yep, our cath is scheduled for the 25th too.
I'm glad you got some better news! :D
I've put my faith in Dr. Day from day one and he hasn't let me down yet.
Keeping you guys in our prayers!
My goodness - I get wrapped up in my life and come to check on Jax - wow. Friday can't come soon enough. I so hope it helps. Poor sweet love. Before Bella's VSD (and ASD) were repaired we were often in the 80s, sometimes lower. Poor, poor little guy. I am always praying, even when I don't have time to check the blog. Lacey, you too, are in my prayers. Hang in there, mama.
Looks like a great time for the boys at the Dew tour! My boys would LOVE that!
Glad to hear that you got some sense of peace after talking to the cardiologist. Do they plan on repairing the VSD ever? Also, are they just going to work on the SVC on Friday or are they going to do more than this?
I'll be thinking of you guys lots and praying lots too! Hang in there! HUGS!!!
Hi Lacey. :) She is going in for the Mitrofanoff procedure, to create a cathing stoma in her belly button. Nerves are setting in now .... ugh!
So glad for the better news and that the boys got to go to the Dew Tour. We went a few years ago and loved it! So glad they have programs like that to help wonderful families like yours out.
I am anxious to hear back from hopekids...that would be fun to do that stuff with you guys. The Dewtour looked great! Hope the boys truly enjoyed themselves! Anxious for Friday!!!
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