This has been one of he hardest weeks of my life. For years I have learned how to balance the care that Alex requires. I can manage nausea, pain, and a slew of other problems. I know when to push him and when to step back. But to watch him struggle with the very real, very intense fear of dying and the anger that his best friend is dead has been heartbreaking. The emotional strain is absolutely exhausting. So please bare with me as I am not as available or takative as usual.
I do need to update you on our appts though. We had two appts on Tuesday. We saw Dr. Koenig and Dr. Navarro (GI). Dr. Koenig's appt was mostly a "check-up" following our admission. We changed out last IV med over to Jtube (his seizure med) and increased his dose. We also discussed Alex's frequent headaches and the possible need to treat them in the future.
After Dr. Koenig, we headed to Dr. Navarro. We officially stopped TPN/lipids. Woohoo!!! we have also come up with a plan to see if Alex is able to reduce or hopefully stop IV fluid replacement. We are all happy with his progress since being hospitalized, but we have not been able to come up with any way to improve our baseline. We continue to discuss possible ideas.
So overall, the appts were good. We are in the process of locating a psychologist who is familiar with chronic illness. Please, please pray for Alex as he is really struggling. Please pray for me to be patient and have the right answers.