October 2006 Archives

On Tuesday October 10, (his regular clinic day) Jack was admitted into the hospital. I had thought that there would be this possiblity and that he may need a little fluid, but turned out that on the way down (the 2 hour ride) he began to present signs of infection in his legs again. Once we got to clinic he was starting to get an elevated temperature so Dr. Bunin admitted him. He was started on antibiotics immediately. Since I'm still having issues with Jack's feeds as well, the doc's thought that maybe it would be a good idea to consult GI again and maybe have Jack get another scope on Friday.

Tuesday night and into Wednesday he was complaining that his butt hurt. Jack has this pertruding "tail" bone and deep dimple which was beginning to get red. This wasn't typical of his usual infections and I recalled how when he was a couple of weeks old in ICU in St. Barnabas Medical Center that one of the nurses had thought he may have Spina Bifida. Since then I have had every single doctor check it out and I have been reassured that it wasn't spina bifida and not to worry. But for the first time in four years he was hurting him. So the doc's decided to have Jack get an MRI to make sure it was nothing. Thankfully the results of the MRI showed nothing and that he has a normal spine. So now the joke is that Jack is a dog and he has a "tail".......

The scary part of that MRI was that it never seemed like Jack came out of sedation well. He was very tired and talking funny. I monitored him for the rest of the night into the morning and he continued to have a little slurred speech. I mentioned it to the doctors on Friday and they decided it would be best to give him a CAT scan. So, that morning we went off to CAT scan and then that afternoon Jack got both an endoscopy and colonoscopy. When we finally came back from the scopes our "friend/nurse" Denny proceeded to tell me that Jack was VRE positive. VRE has bascially quarenteened the the oncology floor in the hospital and now I find out that Jack is positive for it. I felt like what else can go wrong. VRE stands for Vancomycn Resistant Enterococci, which basically means that if Jack should go into the hospital again with an infection that he can not receive Vancomycn (antibiotic) if he cultures positive for infection. They have to give him another broad spectrum antibiotic until they know exactly what the bacteria is that is causing the infection. I think it sounds worse then what it really is. But then the clincher of the week happened next.............

Once settled back in Jack's room I was told that Jack would be going for another MRI. The CAT scan showed calcifications on Jack brain stem.........(this just can't be). Jack's neurologist was called in and she said Jack would be going to an MRI on Saturday morning. She's not sure what exactly this is but she did know that these calcifications were not on his scans from March and August of 2005 (after the stroke) but there were one or two on his scan from April of 2006 and now there were more. You could imagine what was going through my head, espcially after him having a stroke and a seizure, NOW WHAT???? I was alone at the hospital and anixously awaiting Roy to come down, espcially after the day Jack and I had.

So the next day (saturday) Jack was taken to MRI bright and early and later in the day Dr. Ichord (Jack's squash/neurologist) came by and said the these calcifications did not show on the MRI. Does that mean they are really not there? No. This just means that CAT scans sometimes don't show what MRI's show and vice versa. She said as long as he continues to show academic development that that is what they go by. The clinical view sometimes is the key to the testing. So, as most of you know, Jack is a very bright, happy child and is constantly showing his intelligence. He's a 25 year old living in a 4 year old body. The main thing now is for us to continue to monitor his development and make sure he doesn't regress in any way and Dr. Ichord wants to redue the scans in 3-4 months. We were discharged on Sunday.

Soooooo, need less to say, NEVER a dull moment. The good news is that we went back down to Philly today for clinic and even though we had to be isolated because of the VRE his counts almost doubled since Sunday....YIPEE!!! It goes to show, "Faith" brings you through!

Prayer is so important and it has brought us through and will continue to do so.

Please continue to keep us in your prayers as well as my friend Dana who's daughter, Alyssa is in the PICU and also please pray for Daniel Davis. Danaisia Davis lost her battle on Friday October 6. She was a very bright and beautiful 3 year old who could lighten up any room she walked into. God Bless

On Friday October 6th, Jack was center stage as the ring bearer in his cousin Candi's wedding. Please enjoy some of these pictures from the wedding. P.S. Jack is doing well and Roy and I are finally getting over bronchitis.

Jack sporting his tuxedo

Christina and Jack

All the cousins (from left to right Jamie, Jesse, Christina, Shannon, Jack, Candi, Brett and Christopher)

This picture is for you Dr. Bunin....Jack was hand santizing everyone's hands at the reception, even the bride and groom!!!