Maddison home with Hospice

It’s been quite some time since I posted on Maddison’s blog but I thought I’d update it. We have had very unfortunate news with Maddi’s medical condition. We were scheduled to go in to get her broviac IV line out that she had put in due to the infection she got during her open heart surgery in February. They felt that Maddison did not look well the morning we brought her in so they admitted her to do some further testing prior to taking out the line. They discovered that Maddison had lost 2 ½ pounds in less than a months’ time. She was down to 16 ½ lbs and she is 2 ½ years old.




Originally we were thinking there was a GI issue going on and went for a upper GI and lower bowel study, both of which came back as “normal”. I was so relieved. When we wheeled her back up to her room a doctor immediately walked in and asked the echo tech if she had an aneurism on her heart. I was in total disbelief! She said she did see another large aneurism and I totally lost it! They did a CT scan and found that it was even larger this time than before. They were unsure at that time if she would be able to get another surgery done since this was the third time this has happened within a 6 month time period but the surgeon wanted the weekend to think on it. Michael and I had come to our decision that very same day however. We knew that Maddison’s little body would not withstand another open heart surgery and we wanted her home with us more than ever. We felt there was a very likely chance she would either not make it out of surgery or this very same thing could happen again and we may never get her home.



It was a very rough weekend for both of us but by Monday the surgeon came in and said he was in agreement with our decision. He felt that as a doctor if there was a 5% chance to save someone he likes to take that chance but he saw how that was not good enough for us and he could not tell us that this would not happen again or that Maddison would even come home. It made us very firm in our decision to bring our baby home. Mackenzie’s birthday was that weekend and we had a wonderful time as a family.



The Children’s Dream Fund contacted us and offered to send us to Disney for a few days. Maddison LOVES Minnie Mouse and so it was her dream to see her. We all had a wonderful time and I’m so very glad that she got to do something super fun while she still felt good enough to do it.



Maddison is now home with hospice care. She is on constant oxygen and is requiring medication to keep her comfortable. She is only awake for about 6 hours out of the day and has a difficult time breathing at times. She is still a very happy baby. You can tell that she gets tired quickly but she is always smiling and talking and just being a joy.



We are unsure at this time how much time Maddison has with us. The surgeon gave us a rough estimate of about a month but he said there is no real answer. They said there have only been a few cases where an aneurism has actually busted on the heart. They tend to just grow and take over the entire chest cavity. So far it seems to be doing just that in Maddison. As the days go on her oxygen levels decrease and she requires more oxygen and more medication. We are told, however, that she should have a peaceful passing of just going to sleep and we are so hoping she will continue to have wonderful days until God calls her home.



We so appreciate all of you taking the journey with us. Maddison has touched so many lives and has changed mine forever. I would not take one single moment back. She is the best baby anyone could ever ask for. She has the best disposition and I am so proud to be her mama! We will try to keep everyone as updated as possible!



Ashley