10.11.05
Hello everyone....
In my last email to this group, I indicated that Vinny's gene transfer surgery was scheduled for Nov. 30th. As many of you know, his surgery date was actually moved up to Oct 21st. The plan was for us to be in NJ from the 11th through the 25th. So he has actually already completed the surgery.
It was quite a road to say the least. The actual surgery was performed on the 21st. It took about 8 hours and everything went as expected. The genes were successfully delivered into his brain through 6 burr holes in his skull. He was in the hospital for a few days and then we went back to the Ronald McDonald house in Camden (next to the hospital).
We had planned on leaving on the 29th to return to Denver, but it didn't work out that way. After being released from the hospital, Vinny just did not recover as expected. He was still very fussy and was not eating well at all. On the morning of Thursday the 27th, he became completely unresponsive and we rushed him to the ER.
Thurs morning was easily the toughest day of our lives as we had no idea what had happened to him or if he would recover. His vital signs were normal and no sign of infection in his blood or spinal fluid. The thought was that he just crashed from dehydration. This theory was proved to be wrong when the results of an MRI showed a fluid mass under one of his surgery sites in his brain.
The neurosurgeon had no idea what the fluid could possibly be since Vinny had no signs of infection. He decided to go ahead and go back in through the site and remove the fluid....brain surgery #2.
Later anaylsis showed that the fluid was in fact an abscess caused by staf bacteria. The docs determined that even though the infection was removed, we still had to give Vinny IV antibiotics for 6 weeks to make sure we killed the infection completely. Therefore on Weds, 11/2, Vinny had surgey #3 to put in a semi-permanent IV line so we could continue his treatments at home (the line is called a 'Broviak' SP?)
So after all of this, we are finally home. We got back on Tuesday and we have just been trying to get life back on track. Vinny is slowly coming around, eating well and smiling. He lost some weight but is really very healthy otherwise.
We will be going back to NJ for his 3 mo follow up in January, but now we are just focusing on getting his routine back together and making sure he gets his IV treatments. Over the next couple of months we may see some minor improvements from the therapy, but we are not necessarily expecting anything right away. The first two kids who had the surgery have already seen some progress, so we have hope that this will all be worth it eventually.
This is really the overview to get everyone up to speed....Please let me know if you are interested in more or less info over the next few months....
My thanks to all of you for your support and interest in the saga that is our boy....
In my last email to this group, I indicated that Vinny's gene transfer surgery was scheduled for Nov. 30th. As many of you know, his surgery date was actually moved up to Oct 21st. The plan was for us to be in NJ from the 11th through the 25th. So he has actually already completed the surgery.
It was quite a road to say the least. The actual surgery was performed on the 21st. It took about 8 hours and everything went as expected. The genes were successfully delivered into his brain through 6 burr holes in his skull. He was in the hospital for a few days and then we went back to the Ronald McDonald house in Camden (next to the hospital).
We had planned on leaving on the 29th to return to Denver, but it didn't work out that way. After being released from the hospital, Vinny just did not recover as expected. He was still very fussy and was not eating well at all. On the morning of Thursday the 27th, he became completely unresponsive and we rushed him to the ER.
Thurs morning was easily the toughest day of our lives as we had no idea what had happened to him or if he would recover. His vital signs were normal and no sign of infection in his blood or spinal fluid. The thought was that he just crashed from dehydration. This theory was proved to be wrong when the results of an MRI showed a fluid mass under one of his surgery sites in his brain.
The neurosurgeon had no idea what the fluid could possibly be since Vinny had no signs of infection. He decided to go ahead and go back in through the site and remove the fluid....brain surgery #2.
Later anaylsis showed that the fluid was in fact an abscess caused by staf bacteria. The docs determined that even though the infection was removed, we still had to give Vinny IV antibiotics for 6 weeks to make sure we killed the infection completely. Therefore on Weds, 11/2, Vinny had surgey #3 to put in a semi-permanent IV line so we could continue his treatments at home (the line is called a 'Broviak' SP?)
So after all of this, we are finally home. We got back on Tuesday and we have just been trying to get life back on track. Vinny is slowly coming around, eating well and smiling. He lost some weight but is really very healthy otherwise.
We will be going back to NJ for his 3 mo follow up in January, but now we are just focusing on getting his routine back together and making sure he gets his IV treatments. Over the next couple of months we may see some minor improvements from the therapy, but we are not necessarily expecting anything right away. The first two kids who had the surgery have already seen some progress, so we have hope that this will all be worth it eventually.
This is really the overview to get everyone up to speed....Please let me know if you are interested in more or less info over the next few months....
My thanks to all of you for your support and interest in the saga that is our boy....
