Madison makes it though another long day

Madison had her surgery yesterday and so far everything looks to have gone well.  Her day started at just before 1pm when we had to check her in for the pre-surgery MRI.  She needed to be anesthetized for this one so we had to get her there pretty early.  We waited around until around 3:15, with Madison getting increasingly irate for not being able to eat, when the radiology team took her to start the procedure.  So we waited…and waited.  At around 6pm, we finally got a call that the MRI was finished and the surgery would begin soon.  Back to more waiting.  A call comes at 7pm to tell us that things are going well.  More waiting; at this point Julie goes home to spend time with the other two while I stay at the hospital.  Luckily the Celtics-Pistons game was on.  At 8pm, I get a call that everything is still going well.  The main part of the surgery is over and they are starting to close things up.  9pm comes around and this time the call is that everything is done, but they need to clean her up.  It should be done in 30 minutes.  Julie comes back, and at 10pm the nurse calls and admits that while things are still going fine she underestimated the time.  It would be 30 more minutes.  More waiting.  We then get a call at 11pm that the surgery is really close to being done this time and the surgeon will be out soon to see us.  11:30pm, the surgeon (who must be exhausted) comes out to give us a recap.


The 3-D MRI guidance worked great, and they were able to see everything they wanted to see.  They were able to navigate to the membrane between the 4th and 3rd ventricles and punch a hole through.  The incision caused some bleeding, and to prevent the blood from collecting in Madison’s brain, they left in a drain that keeps the pressure in her head constant but allows fluid to drain out.  We won’t know if this surgery was successful until we see how her eyes do, but we had a follow up MRI today (Thursday) just to take a look.  The doctor said there was a lot of pressure on the membrane, so it’s highly likely the pressure was an issue.


We went to the PACU (the post anesthesia care unit we spent so much time in after a previous surgery), and were able to see Madison.  She was really disoriented from the anesthesia and very pissed off from having not eaten for so long.  She had these small bald spots shaved into her head so the MRI could be done.  In short, she’s looked better.  At about 12:30am, we were able to take her to the PICU (the pediatric intensive care unit).  She was clearly uncomfortable, and after two doses of fentanyl, some morphine and a hit of versed,  she finally fell asleep.  I went home around 1am, while Julie stayed with Madison.  From what Julie tells me it was a long night.  Madison woke up soon after I left and fussed and cried until 4:30am.  She couldn’t hold down her food, and stayed hungry the entire night.  Finally at 4:30 she drifted off, and Julie and Madison were able to get about an hour’s sleep.


Today, Madison is better but still not great.  She still needs the pain medication, and she still can’t hold down all of her food.  The drain is looking better, and the surgeon thinks it could come out as early as tomorrow.  The drain, by the way, is a major pain in the butt as it has this long tube that connects to a bag that needs to stay level with Madison’s head at all times.  If we want to pick her up (or put her back down), we need to summon a nurse who clamps off the drain and then readjusts it once she gets resettled.  We won’t miss that once it’s gone.


She’ll be transferred out of PICU to the regular recovery once a bed opens up.  Her eyes look pretty good, and her color is returning.  Once the pain subsides and she can hold down food, she’ll be coming back home.  Hopefully, it won’t be more than a couple of days.

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