We have been home for 3 days now. Yeah!. Can you believe it? Another miracle! Madison's chest tube came out and instead of a 24 hour observation, we had a 3 hour observation. Dr. Everitt released us on Wednesday afternoon. It is amazing..
Since we have been home, we have had a few of adjustments. I wish you could be a fly on the wall in our house, especially with the meds. It can be pretty hilarious. Madison came home on 13 meds. You should have seen the look on people's faces when we picked up our order from the pharmacy. (I should have taken a picture of everyone starring at us..) I wanted to share some of the instructions we have to follow when giving Maddie her meds.. (I hope you find this kind of humorous..)
1. Take with Food.
2. Take on empty stomach.
3. Do not take with milk products.
5. Keep out of light.
6. Avoid contact with other people.
7. Do not refrigerate.
8. Drink plenty of water.
9. Do not eat grapefruit while taking this drug.
10. Chew tablet before swallowing.
11. Swish in mouth for as long as possible before swallowing.
12. Avoid prolonged exposure to sun.
13. Take Monday, Wednesday, Friday only.
14. Take 4x daily.
15. Take 3x daily.
16. Take 2x daily.
17. Take once a day.
I'm happy to report that Madison is doing very well at taking her meds. I found my solution; it was simple. Flavor the meds. Duh! The hospital doesn't flavor meds when you are an inpatient. (Can you only imagine what that order to the pharmacy would entail?) I had questioned her nurse a couple times about flavoring, but never seemed to find a solution. Her meds were absolutely, crawl out of your skin, awful ... but much, much better now.
In regards to everything else, Madison continues to soar. She looks so good.. she glows! I didn't realize how sick she actually looked before. Her decrease in heart funtion was so gradual, which made it difficult to see her little body getting sicker. A once fussy baby is now the happiest person in our home. She is crawling around the house, pulling herself up on things, and simply enjoying life as a toddler. Madison is also eating extremely well. She now eats double what her brother eats. It is cute to see her excited for food rather than me begging her to eat. Dr. Everitt reminded me that some of Maddie's meds could make her really hungry and thirsty ... or she could just feel better. I'm going with the 2nd guess. I love that she feels good and is healthy. I love that she is happier. I love that she has more energy and is interactive. I love that she is more of who she is. I love that I have my baby girl back.
Again, thank you for your prayers, thoughts, and support. We love you.
(I have a couple more hospital entries that I want to post.. stay tuned.)
4 days ago