I often say with Lex she is either all on and great or all off. She manages to flip the switch on her own timing and proves to not make much sense to anyone in the medical field. What I know is that I'm happy she's having more wakeful moments and had two days in a row of nice longer awake times. She got to have a special visitor this weekend who was good for both of our hearts.
The plan...the team here has managed to come up with a plan that involves a team to take on her sodiums and her port. Her port surgery went great. The port will allow us to draw labs at home, give fluids as needed, and administer emergency meds if needed. Because Alexis is such a difficult kiddo to find a vein on and due to all of her recent lines, she has very few spots left that are available. This port provides more reassurance in these moments. She has been kept on the EEG because she continues to have moments of slowing where her brainwaves look like someone who is sedated but she's not. She has right sided movement purposefully happening which is so encouraging. It's slow but it's coming much faster than last time. So.....no answers to the underlying problem to be honest. I can't tell you how very frustrating that is and how hard it is to explain. Every team we are working with is out of tests and ideas for these sodiums that have happened. It's a hard place to be as her Mom. I'm thankful to have a plan to more easily and quickly check and treat her with the port but I'm angry we can't find what is actually going on. I've advocated and will continue to try to find the answers for her to never need to experience this again. I'm going to push one more time tomorrow to see if we have looked under every rock and if there are any other places we can reach out to in order to ask them to look at her case....Bottom line...as long as the EEG looks good tonight, and the doctors all get her sodium and labs plan together tomorrow morning, we GO HOME tomorrow. Prayers that all works out, we have fun things to get back to like being under the same roof and getting to therapy to build our strength back up.Much love Team Alexis