Rosalie is showing slow and steady progress. Her eyes are looking much better, and consequently, she is much less frustrated. She has been getting used to all the nurses and doctors. She normally cries the second they walk in the door (she knows they might poke her!), but the past few days she has been a little more tolerant. On the weekdays, she works with an occupational therapist and a physical therapist. Our big goal with the OT is to have her try swallowing. Our current goal with the PT is to have her sit up 90 degrees on our lap.
She will have minor surgery on Thursday to place a Broviac catheter under her skin. It will be anchored to a central vein and will be used to draw blood, administer chemotherapy and other medications, fluids, and blood products during treatment. The real plus to this Broviac is that Rosalie won't have to be "poked" so many times. It's been our experience that the nurses have a very difficult time drawing blood and inserting IVs in our chubby 21-month old. So the Broviac will save Rosalie a lot of anxiety, and it will save us a lot of heartache.
The procedure of placing the Broviac will be something like 40 minutes. In adults it is something they can install bed-side. But it is too traumatic for a baby, so she will be under anesthesia.
While she is under anesthesia they will also do a spinal tap to check her spinal fluid.
We want to apologize in advance to the medical world as we butcher their language and probably over-simplify their explanations. Case in point: The other day we spoke of "posterior fascia syndrome," when in fact it is "posterior FOSSA syndrome." Wow! We are learning a lot.
Many of you have asked when she will come home. The short answer is: we don't know. But we are beginning to think that we will stay through her first dose of chemotherapy (which would be sometime in the next two weeks). Lucky for us, home is not too far away. A ten minute drive isn't bad. We really feel for all of these families who come from afar. Some of them are literally living in the hospital, using the showers and sleeping quarters provided by UCSF. Others are staying at Ronald McDonald House. All are having to experience trying times in a foreign city. We are blessed that this exceptional hospital is in our back yard.
Thanks again for all your well wishes.
Love,
The Reibels
1 comment:
Caroyln, Mark, Rosalie and Susannah,
Our thoughts, love, and prayers are with all of you right now. Don't apologize to any of the medical folks out there--we are learning more from you and your experiences than you can ever know. I will continue to check the blog and will expect progress on Rosie's OT and PT goals :) Hope the surgery went well today.
Much love, Liana and Josh
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