August 2006 Archives

Sorry, Sorry, Sorry...........

I know it's been some time since we've blogged, and I am so sorry to all of our faithful, caring, readers. Again, here in CHOP I have some problems trying to blog, so I have to send an email to Roy and have him copy and paste at home. He's been so busy at work trying to get everything done so he can come back down here Thursday night.

To make this short and simple, because I could go on forever, Jack spiked a temperature of 101.3 Sunday evening. Most children would just be given tylenol and watch it however being 2 hours away from the hospital we called the on call doctor and were advised to bring Jack down to CHOP. What a rough drive it was to get down here at 1:30am. Thank God Roy decided to drive me, we hit some major storms and saw a lot of accidents down the Garden State Parkway and the NJ Turnpike. Anyhow, once there we noticed Jack's legs were bright red and hot to the touch........Hello cellulitis.....we haven't seen you in a long time. It's been almost 2 years since Jack has had a bout of cellulitis and we thought we wouldn't see it again. This time however, Jack has a new immune system and hopefully the ability to fight it better then before.

The unfortunate part of this infections is that it has grown out an organism that is usually not treatable with oral antibiotics so we are stuck here in the hospital for most of the course of treatment. The really really unfortunate part is Monday (Labor Day, 9/4) Jack will be turning 4 years old and there is a possibility that we won't be home for his birthday. We also planned a small gathering of family and some close family friends for Sunday to celebrate both Jack and Christina's birthday since we missed celebrating in June and now we had to cancel the party. God willing and Jack doing well, we will go home on Sunday so we don't have to celebrate his birthday here in the hospital. We have dodged the past 3 birthdays, so we are hoping dodge this one........please keep praying.

Jack being Jack, is entertaining everyone here in the hospital. You wouldn't even know he is sick. All his buddies have been here and he's even called some of the doctors and left messages on their voice mails telling them he's here and wants them to come and visit. So far Dr. Bunin and Dr. Brown have come, we'll see who comes and visits him tomorrow. Tracey and Denny have both been here and of course his buddy Derrick has been coming in quite frequently to make sure Jack is ok and to play.

Thank you all so much for sending emails and wondering how things are going, you have all been so wonderful and we are so greatful to have an amazing support system in all of you. Please remember to keep us in your prayers and always remember to say a prayer for all children who have been affected with these unfortunate medical issues. There are so many that we have met and so many that need your prayers, too......

God Bless and Have a Safe Labor Day Weekend.

Sorry for the delay in blogging, I just can't understand why I am not able to access my blog while we are hospitalized. Roy couldn't figure it out either I think it's something with the internet connection at the hospital. Anyway.............

So....Thursday night August 3 into Friday morning I had a difficult time with Jack. He had about 5 bowel movements, lots of belly pain, woke up and vomitted something fierce, so I knew what was about to happen. I called down to Ginny, the nurse practioner in Transplant and she thought it would be a good idea for us to come down and be admitted. So I packed a bag got some toys for Jack and left for Philly. Once we arrived we were taken into Triage and Jack lost more weight, a total of 4 and 1/2 pounds in a week, so it meant we were doing something very wrong. Since it was Friday we all knew that it was going to be a quiet weekend but a helpful weekend. The name of the game was pain management, IV steriods to help the GVHD and nutrition and plan for a picc line on Monday if the weekend doesn't go well start him on TPN. Also it was confirmed that Jack has EBV in his gut and in his blood and that he was going to need to start treatment on Monday for that as well as get IVIG's, they didn't think his IV was going to last, so plan ahead.

Well we made it through the weekend with flying colors. Jack showed improvement with his pain as well as gaining some weight. Monday came (Oma's 81st Birthday) and the news came that the doc's were happy with Jack's progress and he wasn't going to get a picc line. Unfortunately we were not allowed to go home. The plan came in place, Monday - Rituxibum(medication for EBV that surpresses your b-cell function), Tuesday - IVIG, continue giving IV steriods and start Oral steriods on Wednesday and if everything goes well, go home Thursday. And today, Thursday August 10, we were able to go home.

Tuesday, Jack officially became +90 post transplant which now gives him the ability to be off mask. The only thing that give us is the ability to go in and out of the hopsital without a mask but we are still unable to go to places with big crowds such as the grocery store, church, amusment parks, etc....the only times we can go to any of these places are during off hours......yeah right!!!!!! Thats ok, as long as we get Jack on track and work towards being totally recovered from transplant and have a working immune system.

Thank you again for all your thoughts, knocks, crosses and prayers and keep them coming.

"Difficulties increase the nearer we approach our goal." -- Johann Wolfgang von Goethe

We now have an explaination for why Jack is having all the cramping and more bowel movements......GvHD (Graft vs.Host diesease) was found in his gut. Below is an explanation of what it is. EBV (Epstein -Barr Virus) was also found. I'm not exactly sure what this means, all I know is that I am taking a trip down to Philly in the morning to have bloodwork done again and talk about how this will all be managed. We have been very fortunate so far with Jack's transplant, so I am hoping that this is just another little bump in the road. All the doc's had a pow-pow today to discuss the results and a plan was put in place. They have increased Jack's dose of prednisone and prograf to help. We will find out more once we sit down with the doc's.
Jack is a fighter and this won't get in his way. One thing is for sure, the increase in prednisone will help him gain his weight back and as once said by another doctor, "A bigger Jack will be a better Jack" and he has proven that statement many times. Thanks for all the prayers and keep them coming.

Today we busted out of CHOP, just in the nic of time. Jack is an absolute terror. He doesn't like being there anymore, so he has become very angry and takes massive tantrums - I have the scratch marks to prove it. So anyway, sorry for not updating, I was having some difficulties with my laptop (it's obsolete) and Jack was giving me a hard time whenever I tried to leave the room.

Since last Wednesday this is what happened, on Thursday the GI doctors decided to have Jack get an x-ray to see if they could see anything strange going on around his gut. From there they decided to have Jack get an upper GI to make sure that he doesn't have any obstructions to be able to give him the go-lytely flush (that's an oxy-moron cause it doesn't go so lightly...). So, needless to say, we waited out the weekend for Jack to get his endoscopy and colonoscopy on Monday. While the doc's were looking inside Jack they were able to get biopsies which we should be getting some results tomorrow. His gut is definitely inflammed but the biopsies will hopefully determine what is causing this. There are so many factors that have to be considered so nothing is being changed until those results come. They weren't surprised at what they saw. Jack's gut is pretty raw. He definitely has some ulcers and an "inflamatory bowel"-like issues. Again, once the results are in we will know better.

We got home late this afternoon and Jack is still not really up to his old tricks yet, but I'm sure they're not far to come. He's lost 3 pounds and he looks really frail. So my job this week is to fatten him up. I am determined to do my absolute best in doing so. Please pray really hard tonight that the biospies do not show anything really serious and that Jack's gut just really needs time to heal. I know his new immune system is only almost 3 months old and Rome wasn't built in a day. Faith has brought us this far, I'm sure faith will carry us through. Thanks for all the knocks, crosses and prayers, keep them coming.

The only limit to our realization of tomorrow will be our doubts of today. Let us move forward with strong and active faith.
Franklin D. Roosevelt (1882-1945) Thirty-second President of the USA.