It turns out that much of the previous post was not certain. I am reporting most of this information third-hand, from the specialist to Dr. Tennenbaum to Mom to me. It seems that there are scheduling problems at UCSF. Because Loki's situation is not urgent, to the surgeons, his surgery there could be delayed a week or two. But, if we were to have the surgery at Children's Hospital Oakland, it could be no sooner than the 9th of February.
Moreover, Dr. Tennenbaum made a case that CHO may be a good place for the surgery for different reasons than UCSF. She believes that CHO is better at responding to more "routine" problems such as post-surgery infection. The risks with the surgery aren't necessarily due to potential problems with the area of work (i.e. kidney). Instead, they are more likely to be recovery issues.
So, we may stay at CHO, although we will also be put on a wait list in case of cancellations. This means we may have to move to UCSF or go into surgery at CHO without much notice. The problem with waiting longer is the increased risk of infections due to the nephrostomy tube. The longer the tube is in, the higher the risk of infection. In case of infection, the surgery needs to be postponed. All and all, a very frustrating situation. Mom is very disappointed especially. The two main day nurses that work with Loki for most of the week since they are the other baby's primaries, are not necessarily the best match. This was not a big problem knowing it would only be for another week or so. The prospect of a few more weeks in the same spot is very frustrating to mom.
Mom's plan to do three visits over a thirteen hour period today did not work out. She awoke at 5:30 AM after 5.5 hours of sleep, pumped, went in for the 8 AM breast feeding practice, came home, napped for twenty minutes, returned for a 1 PM bath, and then stayed until 7:30 PM. Fortunately, she was able to get to bed by 9 PM.
Untitled (written 8/30/2008)
5 months ago
6 comments:
So much uncertainty with this back and forth must be stressful. At least, it's good news that it is not urgent.
Hope mom will get some good rest every once in a while.
Yeah, sometimes news or un-news sucks. (in my best american) Again its finding out how to manage the day breastfeeding thing and how to deal with the disapointing news about staying in CHO a longer time. But you know? You all 3 can handle this! Loki looks so handsome and cute, it must be a pleasure to take care of him. I hope you'll find a way to have enough rest and less stress. Sweet dreams, sleep well and remember, breathe in the belly. Big hug and we'll see you in about 6 weeks!
XX
Lieve mom en dad,
Wat zullen jullie blij zijn als al dit gedoe over is zeg! En als Loki lekker met jullie mee naar huis mag! Heel veel sterkte met het volhouden.
X
Suzan, Johan en Phileine
Slaap lijntje slaap...
Kier
Of course it is a different situation - but I have to tell you guys that I was very disappointed with the care I got at UCSF during my recent health drama. Not only was I misdiagnosed but the staff was completely unresponsive and often times uninformed. I ended up going all the way to Stanford where I got outstanding care.
Of course Loki's surgery will be different people but if Children's in Oakland is an option based on my personal experience I would go there.
Just a thought.
Love you guys!
Hey mom and dad,
Nothing else to to but waiting for surgery then... A good thing about CHO is that it's closer to home and by this time you are used to certain people and circumstances there. It would cost you a lot of energie to switch hospital again.
I hope you'll find your way in the breastfeeding. It's can always be difficult to adjust to our baby's schedule, but you have got an extra handicap there, with the schedule of the hospital. So good luck with everything!
Kisses Maaike
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