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The Pump and our A-HA moment!

  • June 4, 2010 6:31 pm

We said our goodbyes to Evan early this morning as he was wheeled into the operating room to get his baclofen pump installed. That procedure was successfully completed in less than an hour. Soon afterward out came Evan accompanied by his neurosurgeon who was sporting a knowing grin on his face.  The grin was as a result of our “A-HA” moment.  You see, after last weeks’ surgery (when the catheter was inserted in his brain) we had 2-3 good days with Evan finally feeling relaxed. The next few days he reverted back to the  agitation and distress similar to before the surgery.  The doctors, nurses and all of us where perplexed at why his spasticity returned after the days of calm.  Theories were thrown around the pediatric ICU, but no one really understood what happened…until today.
A post-op catscan revealed that the cathater that was inserted into the third ventircle of Evan’s brain had slipped out of its position.  It probably slowly worked its way out of position explaining the gradual regression during the week. So now what…
Evan is going back to the operating room on Monday morning to re-establish the catheter into the correct position, this time using a more robust tie-down. In order to limit the size of the lump under Evan’s scalp, during the original procedure the surgeon had opted for the method which failed (we still love him).  We are disappointed that Evan has to go back through another surgery, but happy to know that we have the plan in place to get Evan back to comfortable.
The hours following today’s surgery were quite difficult for Evan. Here is a picture of a sample pump I placed on Evan to give you an idea of how big it is in proportion to the little guy.  The actual pump is installed under the gauze in the same location on the other side of his tummy.

Baclofen Pump


After finally putting him on a steady IV of pain meds he was able to fall asleep for the better part of this afternoon. The next couple days are going to be difficult. Unless something remarkable happens we’ll wait until Monday afternoon for the next update.

48 Hours Post-Op

  • May 30, 2010 6:01 pm

It has now been just over 48 hours since Evan came out of surgery. The docs have ratcheted up his dosage of baclofen every 12 hours and it currently stands at 240 micrograms per day.  This is 0.24 milligrams versus the 60 milligrams he was receiving orally before Friday.  At the current dose, Evan finally seems very relaxed with eyes open and a heart rate that shows the calm on the monitor.  His body is more loose with increasing range of motion.  It is really fantastic to see Evan in such a mellow state.
OK, comic relief for you…Daddy just snapped this photo.  Enjoy!

Just Chillin with my pals


Surgery Day Updates

  • May 28, 2010 1:08 pm

12:35 Last update for today. Finally fell asleep at 8:00. The 5-8 stretch wasn’t too bad but he sure wasn’t happy even with the morphine. I made Mom go home at about 9:00 and went to sleep on the couch in his room. I just woke up (had a bad dream that I was in the hospital because my kid just had brain surgery) he is still in a very deep sleep and looks quite comfortable. I am going back to sleep and feeling hopeful for the first time in quite a while. 🙂
5:20 We have been back in the room for an hour and a half. Evan just woke up. He’s not happy so the nurse gave some morphine to keep him comfortable. The new tube just got hooked up and the baclofen is flowing to his brain. The starting dose is incredibly small at less than 100 micrograms per day vs current 60 milligrams orally. They really shaved quite a bit of his hair, the OR nurse was kind enough to save some locks for us.
3:45 Done Dr. just came out and gave us the all clear.
3:15 Anesthesiologist just called us in the waiting room. All went well. Doing final stitches and cleanup. Will be doing a post-op CAT Scan and then straight up to Pediatric Intensive Care unit where he will stay for the next few days.
2:55 Brief chat with an OR Tech who went into the room to get a status update. Everything appears to be going well. Expected to be another 45 minutes.
2:38 Still waiting…..
1:23 Surgeon just came to see us. Let us know the GI Dr. Already replaced his G-Tube with the Mic-Key button. Now the brain work will begin.
12:55 Mom and I went with Evan to CAT Scan room. Still sleeping. Dr. Started anesthesia. Lots of kisses goodbye. Now in the waiting room.
12:20 Rolled down to pre-op. Evan was sound asleep. Final meetup with the surgeon. Hooked him up to IV and monitors. Still sleeping on his own.