November 15, 2011
by Stout Family on 11/15/11
Noah's last MRI was on October 13th and showed a 10% increase. Looking at the glass half full, the growth isn't too bad considering his previous MRI showed no growth at all. We suspect that because he was hospitalized in August and on and off his treatment, this is when there was tumor growth because the previous month – he was on his treatment consistently at full dose every day and there was no growth.
On October 24th, Noah had an outpatient surgery for a broviac catheter replacement. We were having problems drawing his blood work which is required by FDA to monitor Noah's electrolyte levels amongst other things, while on the ANP treatment. The catheter had no problems infusing his treatment but for some reason was consistently occluded when we tried to draw. After several trips to the ER waiting 4-6 hours each trip, we decided to replace his catheter. He did well with the surgery and came home that night.
The following day (Oct 25th), was a scary day for us. We watched Noah like a hawk, per the doctor's instructions and that day, Noah complained of a headache and was extremely tired. We knew the hydrocephalus came back and it was time to call 911. Sure enough, as the time went by at the hospital Noah became sleepier and soon nonresponsive. The doctors at UCSF were waiting for us to arrive and soon as we got there, placed an external shunt. Within a few hours after the external shunt was placed, Noah woke up - thank God.
The next day (Oct 26th), we were fortunate someone cancelled their surgery so Noah was able to take their place in the operating room for an internal shunt surgery. There was one minor complication during his surgery but he did well for the most part and was released within two days after his surgery.
As of today, Noah’s doing well. Very happy to be out of the hospital and home to play with his cousins and baby sister.
I also wanted to let you know that Ozomatli has put together an online performance benefit show for our, Noah. Please mark your calendars for November 21, 2011. Tickets are $3.00 with the option to tip the performers online, and all proceeds go to Noah so we need your support. Please spread the word and the love for our Noah. For more information, please go to the More Info tab and click on Ozomatli Benefit for Noah 11/21/11.
Sorry for the delay with the updates... it's been an extremly busy couple months for us.
