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