Home and LOVING IT!

THANK YOU FOR ALL OF THE PRAYERS!
 As you can see, they worked.

I am sorry I have not updated the blog since we have been home but we have been busy. Jake is doing AMAZING. He is pretty much back to normal. Happy, playing and pretty much pushing every limit and restriction he was sent home on lol.

As soon as we got home I set up my command center. 

Anyone who knows me also knows that I do better when I am in control (I am a serious control freak). Jake being sent home on all of those medications made me feel pretty uneasy but as soon as I set my board back up I felt so much better. I only really needed it for the first day or two but still it makes me feel better to have it lol.

We have been pretty busy with appointments since we have been home. Last week we had 2 chest x-rays, blood draw and two cardiology appointments. When we left CHOP Jake still had some fluid on his right lung. They increased his oral diuretics and we were able to come home. By that Monday the chest X-ray showed almost no fluid! It could be the added diuretic but I think it is because he was happy to be home and out of that hospital bed.

The X-ray on Friday looked even better. There was no fluid! Yay, now lets hope it doesn't come back. We went back to the Cardiologist today and the X-ray still looked awesome so we were able to get rid of one of his meds! Diuril is now cut off that long list pictured above. If things look good on the X-ray next week then he can drop the Aldactone and Sodium and the Lasix can be cut down to two times a day. That would mean we would be down to only 4 medications a day. We are headed in the right direction! We have to slowly ween off of the diuretics to make sure the fluid doesn't start building back up.

Jacob's oxygen levels are still hanging out around 85. This is normal. It could take 6 months to a year for his fenestration to close and the oxygen levels to get up into the 90s. If in a year they are still low then he will need to have the fenestration closed through a Cath. Hopefully that won't be necessary and those numbers will start to go up on their own. Either way it is not something we need to worry about right now.

Jake is back to his crazy 3 year old self. He is still technically healing yet you would never know it. He is climbing on everything despite me telling him he isn't supposed to yet lol. I woke up the other day and he was in my bed. He climbed up on the table next to my bed and climbed in bed with me while I was sleeping. SERIOUSLY JAKE. A few days ago I looked over and he was trying to go down his little slide on his belly. I ran over and grabbed him and he started laughing at me. He may be driving me crazy with worry but it is so awesome to see him back to normal. A smiling, happy rambunctious three year old boy. He amazes me daily.

I will try to write again soon but as always no news is good news. If I am not posting that just means we are living life and enjoying every minute!