Today was the day. Joshua spent the afternoon at his cardiology appointment & it went well. He was a good boy, a little nervous at first, but very good.
So here's what we learned.... Joshua's heart is still doing well. However, he is at a point where we can get the ball rolling on the Fontan (Joshua's next open-heart surgery), if we choose. We have some say in the matter, because he is stable enough that we can do it when it's convenient. I don't know that there is ever a convenient time for open heart surgery...but since it's inevitable, it's nice that we have some say in the matter.
We went into the appointment today knowing that the time for surgery is approaching. After more discussion, Jon & I decided to have Joshua's case turned over to the doctors at UCSF for review. If they give us the go-ahead, Joshua will have a cath scheduled some time in the next couple months (probably by the end of the year) & then surgery within six months of the cath.
We are very happy to see that Joshua's heart is holding steady. He was using his pacemaker today when he was being examined, which is the first time we've been aware of him using it at all. The doctors had previously discussed having it removed during the Fontan, since it wasn't being used. That's no longer the case & he'll keep it. The pacemaker gives me reassurance. I have grown to like it, so this news is ok in my book.
Another concern we've had, as I have mentioned, is his shortness of breath. He gets winded so easily & Dr. Rivera suggested it could be asthma. I am not certain that's the case, but he prescribed a breathing treatment to try on Joshua before activity and/or when he's sick. We are going to give it a shot. I'm really hoping it helps & if it does, it'll be amazing & who knows, maybe we'll choose to wait on the Fontan a bit longer. Our main concern right now is Josh's decreasing activity level...so if this breathing treatment helps, then we are in good shape!!!
We feel incredibly blessed to be in this position. We are so grateful that we have flexibility in scheduling & a stable little boy. We'll keep you posted once we hear back from UCSF with their game plan.
Subscribe to:
Post Comments (Atom)
11 comments:
That's so wonderful that he's stable enough to wait a bit on the Fontan! Hopefully you can time it so that it doesn't happen when all the goobers are at their worst aka fall/winter. Crossing my fingers that the asthma treatment works and Joshua gets his energy level back!
That's great news that Joshua is doing so well! It's wonderful that your Dr's work with you so well in giving you some say on when surgery happens. Obviously, the final call is always up to us as parents but it is nice that you get to be so involved with choosing the timing.
That's great news! I hope you have found the answer to his shortness of breath as well.
Yay Joshua!
Happy to hear Josh is stable & completely in awe of your incredible perspective....
Anxious to hear what the dr.'s come back with and hoping the breathing treatment helps to get Josh back to his active self :)
So amazed by you Josh!
I am so glad you got everything you wanted out of the appt. The power to have some input especially, since you had said it can be frustrating that they only see Josh on the table where he is FINE!
Keep us posted on the results of the breathing treatments and plan of action. He is such a miraculous little man! :)
So glad to hear that Joshua is stable and doing well!
It sounds like it went as well as it possibly could have. So happy to hear!
Keep up the good work, Josh!
Glad to hear he is stable, and that you are willing to give the time frame to the doctors! Casey also has asthma, but it was not diagnosed until right before his Fontan, due to the fact that heartkids have so many breathing troubles anyway. Good Luck with the breathing treatments. If you can get Josh to like Star Wars, we call it the "Darth Vader Medicine".
We love you guys so much and Joshua is just the sweetest little boy. You're family is inspiring and we're all pulling for the little guy.
Hi Allison- I don't think I've commented before on your blog, but I've followed Joshua's story for a little while. My son also has a CHD (double inlet left ventricle) and is also waiting (indefinitely) for his Fontan. I noticed that Joshua had his diaphragm plicated at some point? My son, Luke, had his left diaphragm plicated after his Glenn back in 2007. I wanted to share with you some thoughts from our cardiologist regarding Luke's heavier breathing (especially as he grows). Our cardiologist actually attributes much of that to his paralyzed left diaphragm. He says kids with only one functional diaphragm actually learn to breathe differently, from their belly rather than their chest. He is more and more convinced that Luke's breathing is a function of his diaphragm and not his heart. I just wanted to share that with you so you could maybe ask a few questions around that. It definitely could be something totally unrelated, but I wanted to comment because we felt for a long time that we didn't have any answers as to why Luke breathed hard even though his heart was so strong. I hope this helps a little! Maybe just one more piece to this crazy puzzle!
Jesse
http://smithfamilyjourney.blogspot.com
Allison, I am glad to hear that Josh is doing well enough for you and Jon to have somewhat of a say in when he has his Fontan. On the otherhand, reading your post brought tears to my eyes. I remember meeting him when he was only 5 months old. I will keep little Josh in my prayers.
Post a Comment