http://www.vincentshope.org/b2/index.php babblings ! en kkbward1@comcast.net Copyright 2006 2010-09-04T22:06:32 hourly 1 2000-01-01T12:00+00:00 http://www.vincentshope.org/b2/index.php?p=5&c=1 2006-02-15T08:34:27 vincentshope (mailto:vincentshope@vincentshope.org) General 5@http://www.vincentshope.org/b2/index.php Back home from NJ. A somewhat brutal trip as Vinny got sick and ended up with ear infections and just general virus symptoms. The good news is that the MRI has shown some myelin growth and is really exciting news. We will be looking for more results ... http://www.vincentshope.org/b2/index.php?p=4&c=1 2005-12-06T20:30:31 vincentshope (mailto:vincentshope@vincentshope.org) General 4@http://www.vincentshope.org/b2/index.php Well, we ended up back in the hospital again. On Monday the 14th, Vinny was acting really lethargic and had a low grade fever. We took him to NCMC in Greeley and we ended up having to have an ambulance take Vinny down to Children's in Denver. After a ...
After a couple of days in the Ped Intensive Care Unit, they finally figured out the broviac catheter that we got in NJ ended up getting infected. The infection was actually a pretty easy one to kill but then we found out he also had a yeast (fungus) infection in his blood from the broviac.

Turns out, the antibiotic we were giving him for the original abscess was suppressing his bone marrow and it killed off good bacteria and left him very susceptible to both infections he ended up getting. the good news out of the whole ordeal was that brain imaging showed that the abscess he got from the surgery was pretty much gone and he didn't need to take oral antibiotics through mid jan.

So in the end, he spent almost three miserable weeks in the hospital on 2 antibiotics and 2 anti-fungal meds. It was rough, to say the least, but we made it...

So we finally got home again on Saturday and he is doing much better. He is smiling and starting to eat again. It will still be a few weeks before we can really hope for him to really recover, but at least now he doesn't have any lines in him and he is not on any meds.

So now we just wait until Jan to see if any progress shows up on MRI in Philly/NJ. All we can do is try and have some hope that that the therapy will eventually be worth it....we shall see.

Again, my thanks to everyone and I hope everyone ends up with a happy holiday good things to come next year....

Brian, Kara, Kayla and Vinny
]]> http://www.vincentshope.org/b2/index.php?p=3&c=1 2005-11-10T11:56:00 vincentshope (mailto:vincentshope@vincentshope.org) General 3@http://www.vincentshope.org/b2/index.php 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 ...
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....
]]> http://www.vincentshope.org/b2/index.php?p=2&c=1 2005-06-13T13:02:51 vincentshope (mailto:vincentshope@vincentshope.org) General 2@http://www.vincentshope.org/b2/index.php Well, I'm finally getting around to updating you all on our Vinny. After his g-tube surgery in January, Vincent has gained so much stregnth. The extra nutrition that he gets at night is just what the doctor ordered! He continues to gain stregnth in his arms and trunk which leads ... The gene therapy trials should start this July. There have been many roadblocks in getting the vector right where it needs to be but we think that everything is finally shaping up. There will be six different kids having the surgery over three months and we hope to have a date very soon. We will let you all know as soon as we do!

Thank you all for your love and positive thoughts, Kara]]>