Ollie smiled and laughed for the first time in 21 days today thanks to a very compassionate neurologist who took the time to give him some of his power and control back.
This will be a quick update as I am seriously exhausted tonight. It was another good day. Ollie ate well, but it was challenging given he is fluid restricted right now as the Endocrinologist tries to sort out his sodium levels.
He had another ECG today as well as a GFR (to test his kidney function), visits from Social Work, Psychology, Neurology, Palliative Care and Oncology. Are you tired yet? Sometimes it exhausts me just thinking about how many meetings we have with doctors each day.
Oncology agreed to give Endocrinology anther day to work out the sodium issues so chemo was delayed to tomorrow. The next lumbar puncture and inter-thecal chemo will now be Saturday.
Neurology were cautiously optimistic about some minor changes to his vision situation and explained that their best hypothesis is that a bunch of lymphoma cells gathered in and blocked the optic nerves and they are still hoping that it will be reversed when he no longer has lymphoma cells in his cerebral spinal fluid.
Ollie got up and sat in chairs, walked to the bathroom for the first time in 18 days, went for another trip to the gift shop today and was generally happy to play Lego.
Tonight we had a visit from Maria who as always brought so many generous treats (thanks for the baby shark, Sofia, now we can't get it out of our heads!).
Later, Ollie asked Mommy to do a scavenger hunt in his room and we used it as an opportunity to orient him and get him more comfortable learning to feel around him.
Unfortunately our night ended on a somewhat more negative note in that his PICC line appears to be clogged, so they had to put in a temporary IV tonight to check his sodium levels and give meds as needed. They'll leave a cleanser in his PICC line overnight that should fix the problem by morning. He took the second poke today like a champ and went right back to sleep.
I am going to do same now in case he's up at 5 am again! Missing Abby and Mario terribly and hope they are well again soon.
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