Geico Bake Sale for Maddison

We are so honored that Gieco has gone above and beyond and is doing a bake sale tomorrow in honor of Maddison to help raise money for her final expenses. I just wanted to write a quite note and thank everyone involved in that. We so appreciate your kindness and consideration for our family at this time!

Maddison had a rough night last night, her plus ox is set pretty low at 65 to buzz and she buzzed quite a few times. I ended up having to give her a couple of extra doses of meds to keep her calm. She had a pretty good day today so I am hoping for a better evening tonight.

Well about to go to bed myself! Just wanted to write a quick note before I did!

Ashley

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

Update on Maddison

I know there has been a delay in me getting an update up. Sorry for that! I haven’t much time to get online since Maddi has gotten more active during the day and wants me to hold or play with her. Maddi is doing well. She has come a long way in a very short amount of time that’s for sure! She got her broviac line put in on Thursday which is the IV line they needed to put in for her to go home with. This is a long lasting line and has less risk of infection. All her meds have been switched to her g-tube as well. So she’s only getting the antifungal med through the broviac which is required to be IV.




She has been on again off again with the oxygen. She is so borderline on her stats that they feel like they should send her home with a tank to use as needed. Sometimes she just needs a very small amount in order for her stats to come up and her feel better. She is doing well on feeds. I think she’s had a few small spit ups but nothing major. They did do a saliva study on Friday. We give Maddi small amounts of water in a syringe to wet her mouth and there was concern of aspiration since she’s had a history of having pneumonia in the past. They were attempting to do a swallow study but she would have had to be restrained into a upright seat with buckles and given different consistencies of fluid to see what she would and would not aspirate on. A therapist came up to try and work with her prior to the procedure and found that she was not ready for such an extensive test given that she would not stay restrained into the seat let alone eat anything! So her GI doctor suggested a saliva study. He said with the small amount of water we were giving her would really only amount to about what she had in her mouth already. We got the results back today and she passed! She was not aspirating on her spit so we are able to continue giving her the water. Which I’m so thankful for because her mouth gets so dry sometimes!



They are talking about us being able to go home in the near future. They are working on getting some home care set up so they can come show me how to properly take care of her IV and give the med that she needs. And they are also going to be working on getting oxygen delivered to the house. They said once those things are in place alone with her “behaving herself” (keeping her fevers down!) we could go. So we are hoping we are looking into the near future!



Overall I think she looks good. She is a little more tired than normal but we have been able to take her into the play room they have her for periods of time and she enjoys that. Times like those we see our Maddi getting back to her old self! We hope to be giving reports of going home soon!



Ashley