Kennedy unfortunately had to be admitted to the hospital on Tuesday. Her ammonia had been a little off here and there since the previous week, and was over 100 on Tuesday morning when her blood work was checked. She was given fluids via IV in the emergency room first, but her team wanted her admitted for observation and to ensure her ammonia came down to the normal range without issue. Thankfully, it was our shortest visit yet – we got to come home Wednesday night! 

 

Everything went smoothly overall. Or, as smoothly as it can go with an (almost) 20 month old (btw – when do people stop saying months and switch to years?). Kennedy is honestly a champ when it comes to staying in the hospital. The worst part is always getting the IV placed – at this point Kennedy knows whats going on and gets super upset. Plus her veins are pretty beat up from the last 6 months of everything so we tend to have issues getting an IV – in this case it took two tries and the vascular team had to come to use ultrasound to help them. After that we got settled in and moved to our room pretty quick.

 

The U really does a great job trying to keep the patients and their families comfortable when they are there. They are able to bring in books and toys for Kennedy, as well as bigger things like play mats and a small table and chair, for example. They have things for the adults too – books, nail polish kits, knitting supplies, and a small workout facility, to name a few. We were also allowed to take Kennedy OUTSIDE on walks on our own which was AMAZING. Kennedy absolutely loves being outside and it helped us break up our time there. We’re pretty sure some people thought we were trying to escape when they saw us out and about 🙂 

 

The team made some small changes to Kennedy’s diet and we are hoping this helps keep her more stable. She will go in for blood work on Monday to recheck everything and see how she is doing. 

 

Thank you again to all who have donated to COTA for Kennedy – we have now had over 100 donors and this is wild to us! We are beyond thankful for everyone who continues to support us on this journey with our sweet little K. Please feel free to subscribe to this page to receive updates as they are posted.