August 3, 2017 9:30 pm
The day started today with very good news. As previously reported, we had been told that even with a rush placed on the order, it would take two weeks for us to get Josh's new synthetic skull piece and that Josh was stuck in limbo in Swedish Hospital until then. Well, Dr. Rubin let us know first thing this morning that the skull piece should be in hand by tomorrow or Saturday at the latest and that he will do Josh's surgery next Tuesday. We were ecstatic with this news. It still means we lose a chunk of time in Josh's rehab, but it is a lot less time than we had been told through yesterday. Our fingers are crossed (and our knees bent) that this new time table will stick!!
In the meantime, the external ventricular drain (EVD) that Dr. Rubin inserted on Tuesday night is working extremely well. We were both shocked to see how much fluid had been drained in such a short time. The shape of Josh's head is TOTALLY different than what it was just 12 hours earlier. Under the heading of "a picture is worth a thousand words" ...
A bit alarming, actually. In fact, a little TOO much fluid was drained today, so the medical staff decreased the drainage for a while. But this is all good -- we are headed in the right direction AGAIN.
We are still trying to get comfortable in our new home at Swedish (named, by the way, after the Swedish Women of Chicago who donated the funds to convert the hospital from a tuberculosis sanitarium to a full hospital in 1924). The buildings seem like a maze -- lines of permanent tape in different colors have been placed on the floors to help people find their way around!! Parking is a challenge. The food isn't as good as Craig. We don't have a one-on-one tech to be with Josh 24/7. There isn't nearly as much therapy for him, so more time lying in bed bored. But the people are nice and helpful (mostly) and seem to care, which is the most important thing. We look forward to getting back to Craig sometime later next week.
The day started today with very good news. As previously reported, we had been told that even with a rush placed on the order, it would take two weeks for us to get Josh's new synthetic skull piece and that Josh was stuck in limbo in Swedish Hospital until then. Well, Dr. Rubin let us know first thing this morning that the skull piece should be in hand by tomorrow or Saturday at the latest and that he will do Josh's surgery next Tuesday. We were ecstatic with this news. It still means we lose a chunk of time in Josh's rehab, but it is a lot less time than we had been told through yesterday. Our fingers are crossed (and our knees bent) that this new time table will stick!!
In the meantime, the external ventricular drain (EVD) that Dr. Rubin inserted on Tuesday night is working extremely well. We were both shocked to see how much fluid had been drained in such a short time. The shape of Josh's head is TOTALLY different than what it was just 12 hours earlier. Under the heading of "a picture is worth a thousand words" ...
A bit alarming, actually. In fact, a little TOO much fluid was drained today, so the medical staff decreased the drainage for a while. But this is all good -- we are headed in the right direction AGAIN.
We are still trying to get comfortable in our new home at Swedish (named, by the way, after the Swedish Women of Chicago who donated the funds to convert the hospital from a tuberculosis sanitarium to a full hospital in 1924). The buildings seem like a maze -- lines of permanent tape in different colors have been placed on the floors to help people find their way around!! Parking is a challenge. The food isn't as good as Craig. We don't have a one-on-one tech to be with Josh 24/7. There isn't nearly as much therapy for him, so more time lying in bed bored. But the people are nice and helpful (mostly) and seem to care, which is the most important thing. We look forward to getting back to Craig sometime later next week.
Thank you for this update. We're back on the road now, and heading for a lot of good news! Love you all. Mom
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