Updates on Maddison

Hi all! Thanks to everyone who has been on the Pray for Maddison website. My mom created this page to give information on how to donate to our family and for an opportunity to read and see more about Maddison and her life. I had one ask what her other site was and it is on carepages. I think you can look up her name but her page is listed under MaddisonLeighFord.

I also wanted to take this opportunity to thank everyone who donated to our family. Please know that was truly a blessing to us and it allowed us to not feel so much of a financial strain while we have been in Orlando taking care of Maddison. My mom finally got the bracelets in. If you gave through PayPal we have your address and you should receive your bracelet shortly! If you gave by some other means please email me so I can make sure we have your address so we can get one to you! My email is aford514@aol.com

And now for the important stuff! An update on Maddison. So far we have been at Arnold Palmer Hospital for 2 months (today actually). Maddison has gone through more than most go through in a lifetime. We have undergone an open heart surgery, 2 heart caths, and a Nissan surgery while we have been here. Which although we feel we've been here forever, that is a lot for a little person to go through in such a short period of time! She was on a ventilator for about 30 days less the two attempts they had taking her off. Third time was a charm and she was off! She was on nasal air for a few weeks and then underwent the Nissan, which she was put on the ventilator for yet again. They were going to leave it on her for 24 hours but she was having none of that. Within 2 hours of coming back from the surgery she woke up and was not happy with the vent! They took it out!!

Since the surgery she has done well. We had a few rough days where she felt bad. The pain meds they were giving her didn't seem to give her much relief. She had been on them so long she'd built a tolerance. But now, being 8 days post op she is doing wonderful! Her scar from the Nissan is pretty small, although very long. It starts where her heart scar ended and goes down to her belly button. She has done really well on her feeds. Currently she is on continuous feeds and getting one ounce per hour. Which is her goal feed. Yesterday and today they are working on getting all her meds through g-tube. That has been successful so far. They are thinking she will be able to go home on Thursday or Friday of this week! We are thrilled!!

As for future plans with Maddi. They are scheduling another cath for her November 31st. Which should be a one night stay. The cath doctor felt she would need one cath per quarter this next year with the idea that another open heart surgery would be needed within 8 months to a year. I feel like we can't get away from this place for too long! They said the stints they put in only have a years worth of life to them before they need to be taken out, which is the need for another surgery. They said as long as all goes well with that surgery they didn't feel she'd need another until her teen years. That is our hope!

Thank you all for checking on Maddi, praying for our family and giving so much of your support to us! We would not have gotten through this very hard time without that!!

-Ashley