So anyway, Joshua's sats are in the low 80's which isn't great. We are waiting for UCSF to call us in the next few days to schedule him to have his fenestration closed. It should be a fairly simple procedure and we are hoping his sats will be nice and high after he recovers. Anyway, I expect that to happen in early March, but I'm not sure how soon it'll happen at this point.
Now for some really good news...a lady from Make-A-Wish called this afternoon & began discussing possible dates for a vacation for our family! That call couldn't have came at a better time. I had been feeling pretty bummed out today because I was hoping for better news at the dr. appointment. I couldn't help but get emotional imagining Joshua & the rest of the kids enjoying an amazing get away. It's overwhelming. More on that later.
And what kind of a heart mom would I be if I didn't mention it's Congenital Heart Defect Awareness Week...more on that later too!
Got to run, but thanks for checking in on us!
9 comments:
Hey Ally....Sounds like mostly good news today, especially when you balance in the family vacation! That's so awesome that they're doing that for you....I know you all need it, even though you seem to glide along gracefully to the rest of us. :)
Josh is lucky to have you.
Love you...EMily:)
Hi Allison, I am sorry, I had no idea Josh was in heart failure. This brought tears to my eyes when I read it. Though I haven't really kept in touch, your little Josh is dear to my heart. I guess I wouldn't have expected this so soon after the Fontan. I noticed you said that at this visit his heart function is mildly depressed. Does this mean he is no longer in heart failure? I am glad his recent cardiology visit was better than the last one. I am sorry that this is happening. I am happy that Josh is getting his wish granted. I am sure you will all have such an amazing time. I will keep Josh & your family in my prayers.
Big Heart Hugs
Love and prayers...always. love the helmet too!
Thank you for the update. We love to hear about how Josh is doing...the good, the bad, and in-betweens too. Hang in there, hon! And thank goodness for that opportunity to get away for a bit! We love you guys!
Allison, glad that things are getting a little better. Tyler sats in the low 80's as well which I was told is typical with a fenestration. Tyler is getting his fenestration closed mid march and they say sats usually get to mid 90's after that. Any reason they waited this long to close Josh's? What meds is he on? Give that little man a big hug from us!
Hi Heidi- not sure why they waited so long to close the fenestration....when he left the hospital after the Fontan his sats were in the 90's but it's dropped! They told us that often it'll close itself within a year so I think they wanted to give him a chance to close on its own.
As for meds:
Enalapril has been doubled! 2ml 2x a day
Lasix 1.5 ml 2x a day
Spironolactone 2ml 2x a day
Plavix .5ml once daily
1 baby aspirin a day
He was taken off digoxin last month
Before this current episode (post op) he was only on lasix, plavix and aspirin.
Anyway....hoping we can cut back on all these meds sooner than later!!
Miss you Heidi!
Well, it sounds like things are heading in the right direction, right? I can't believe he's so good at the doctors! And I don't blame him for being anxious during his EKG- I had to get one for a work physical last year and I was surprised how anxious it made me!
Keeping you guys in our thoughts and prayers for a smooth fenestration closing that makes a big difference for you guys.
So sorry to hear about the extra meds. It always made me feel like we were stepping backwards even though the news seemed not that bad. :( I'm also excited to hear all about Josh's Make.A.Wish! We had our volunteers bring dinner last Friday and interviewed Logan for his and talked about dates too. Looks like we'll be experiencing this incredible blessing together! Isn't it so much fun to witness this gift through our kiddos eyes! I just can't imagine their excitement...because mine is so great! :) Take care Allison!
I can relate to feeling frustrated (and scared) by slow progress. Magnus was on ever-increasing doses of viagra for 14 months before it made a real difference in his pulmonary hypertension. I'm glad to hear that things are moving in the right direction, though! I also look forward to hearing about your trip!
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