January 2007 Archives

We tried our best to have a nice weekend and succeeded in doing nothing. It's so hard to get back into the swing of things after being that long away from home. There is so much to be done here at home as well as getting used to the IV feeds. I didn't know I needed to be a nurse when I applied for being a mother???!!!!! Hey, I never applied, Christina just gave me the job............(Trying to keep a sense of humor as usual.)

Anyway, we've had some difficulties with the amount of fluid that Jack is retaining from all the TPN and we called down to CHOP everyday all weekend. Jack always has this problem with the constant battle of low protein levels which contributes to his swelling. We were able to give him a diruetic to help him loose some of the fluid and against doctors orders, Roy and I decided to not give him his TPN on Sunday night. Jack weighed 16.9 kilo's on Sunday and on Monday morning after giving him the Lasic's he weighed 15.6 kilo's. He lost more the 2 pounds of fluid over night. Tell me that's not crazy. So wether the doctors liked our decision or not, I was certainly glad we did what we did.

We went to clinic yesterday and Jack's labs actually looked pretty good. His potassium level is on the low side so they have to add more to his TPN. So we are waiting on a new delivery with the new formulation. I was all freaked out last night again with the amount of fluid he was retaining and I didn't want to hook him up to the TPN. I called down to CHOP and spoke with the fellow on call, Dr. Carly, who is so bright and wonderful to talk to, and she reassured me that he would be fine. Roy gave Jack the lasic's and thankfully during the night Jack didn't hold on to too much fluid. We need to go back down to Philly on Thursday to get lab's and hopefully his platelet level will be fine. Jack hasn't been making his own platelets and has had to get them once a week while we were inpatient, so we are praying that with the better nutrition he will start to hold on to his and make more.

Thank you for all the thoughts and prayers.

God Bless

Today Jack was discharged and we are now finally home after exactly 4 weeks in the hospital. There is definitely "no place like home", especially home together as a family.

We got our delivery of TPN and supplies this evening and a home care nurse came to help us get reaquainted with doing all of this. Thank you MaryJane!!!!! And now begins our journey of home TPN and with lots of prayers NO MORE HOSPITAL STAYS!!!!! The original thought was to keep Jack on TPN for 2 months in hopes that the IV nutrition will help give him what he needs to heal his gut, give him the right amount of electrolytes, gut rest and weight gain. We've got one month down so one more to go and a kid that weighs 34 pounds. With the GVHD results from the biopsy and the medication protocol required to treat it, we are hoping that Jack will start to show signs of a healing gut and a working immune system.

As always, thank you for all the much needed prayers.
We are hoping to have a very quiet family weekend.
God Bless

I'm home with Christina again this weekend and so happy to get a break. The boys are at the hospital creating havoc for the nurses (Tracey, of course) and bonding. Roy has Jack saying "I hate this place, Tracey never works!".....Roy's such an instigator, but it's all in good fun.

Thursday afternoon, Dr. Bunin asked me to come out into the hall to talk to her and right away I thought the worst, but was then happy to hear, believe it or not, the biopsy results of his scope last week is showing GVHD in his gut. After looking deep into the tissue that they got, there it was. Dr. Bunin being the doctor she is, proceeded to tell me that she wants to make absolutely sure of this and is sending Jack's slides off the Seatle Washington where they see a lot of gut GVHD, to have a second opinion. Dr. Bunin said that most cases of GVHD in the gut usually shows signs of it on the skin and it is a little puzzling to her that Jack doesn't show any signs of this. (GVHD occurs when white blood cells in the donated bone marrow (the graft) identify your cells (the host) as "foreign" and launch an attack, just as your immune system would normally attack infection.) This was great news to finally get a reason to why Jack's stooling isn't getting better and every test they have run has come back negative or normal. Now on the flip side, GVHD isn't always a great thing to have. Thankfully it has been found and treatment has already started. Dr. Orange stopped by today and told Roy that if all goes well with the new plan of attack, we should start to see a difference in Jack's stooling by the beginning of next week. Maybe we'll be able to bring Jack home the end of next week. That doesn't mean that it's going to be easy since he will have to remain on TPN for a couple of months. GVHD in the gut causes a lot of diahrea and very little absorption so we don't have a choice about nutriton at this point. This really explains so much to why he hasn't been able to gain the weight through his normal tube feeds. No absorption, no weight gain. Unfortunately it takes getting a scope to really see deep into the tissue to be able to get this diagnosis, but it was all worth it. Now it is a matter of getting it under control and getting Jack better.

Treatment for this is an increase in steriods (yuk) and starting Jack back on the Prograft which is a medication to help prevent GVHD. The protocol for Prograft is usually given for a short period of time after transplant which Jack had the full course but unfortunately you can't see what's going on in the gut to determine if the course needs to be lengthened. The good news is that there is a rhyme and a reason and now a plan.

Thank you for always remembering to keep us in your prayers and with the power of prayer we have gotten our answer and working towards recovery.

God Bless

OOOPS, I almost forgot.....engraphment studies are back still 100%donor!!!!!!!!

Sorry to our faithful readers for not blogging.

Last week on Thursday night, Roy and I made the switch. He got down here around 6:30pm and after going over all the instructions and details of what has been going on I finally hit the road around 7:30. Got home late, but gave Christina a kiss good night and got to sleep in my own bed.....Yeeha!!!

Friday morning Jack was scheduled for an Endoscopy and Colonoscopy, again. So, of course I was up early waiting for Roy's call to tell me that Jack went into the OR. I got the call and I was put at ease. There haven't been many procedures that Jack has had that I haven't been there for, so it's always difficult for me to be away. Anyway, the scope went well and we were told that we wouldn't have biopsy results until this week. Roy and Jack had a good weekend and so did Christina and I. It was so nice to be home but everything must come to an end and Christina, my mom and myself left early Sunday to make our way down to Philly.

It's amazing how a couple of days away that I could really see a difference in Jack. He's gained about 2 and half pounds and he's got those huge cheeks again, which is so nice to see.

Here we are Wednesday and so far believe it or not, we don't know anything more then when we got here. His scopes came back that his esophagus, stomach and duodnum (please forgive my spelling) showed to be better and his lower gut is still very inflammed and quite obvious of why he's still having all this watery stooling. So on to the next step......

I did neglect to mention that there was a big meeting last Tuesday with, GI, BMT, and Immunology to discuss what was going on with Jack and that is how the scope came about. We left the meeting with a few different things that were going to be done. Some med's eliminated, some new ones started and also GI contacting 2 other doctors from 2 different hospitals to have a NEW pair of eyes look at what's going on with Jack and see if they can offer a suggestion to help our boy. Dr. Phil Putnam, the doctor in Cincinnati who we went to go see when Jack was first diagnosed with ED is one of the doctors to be contacted. We were very happy with that decision.

One of the things that is on the table and we should know by tomorrow is to start Jack on something called GMCSF shots. What this will do is help boost his immune system. This shot is given to some during transplant to help their cells along and this shot is also given to GI patients who have Inflamatory Bowel Disease or Chrons Disease to help with the inflamation. I'm not sure if this is the last resort, but at this point we need to do something. Even though there are signs of his gut getting better, which is what we have been asking for, we still have to get through and get a handle on all the stooling. The more this goes on we are at risk of malnutrition and dehydration again and as Dr. Bunin put it we're at risk of loosing him. The transplant won't make a difference if his nutrition isn't good.

All in all his nutrition is getting better and hopefully we will start to see a change in his stooling. As soon as we start to see a noticeable differance then maybe they will let us go home. Right now there is no discharge in sight.

As always thank you so much for always keeping us in your thoughts and prayers and of course I ask for you to continue.

God Bless!

The Mummer's Parade that is...................

With permission from our doctors and a 6 hour pass, we left the hospital and shared a sensational experience with Philadelphia. The weather couldn't have been better yesterday, somewhere around 70 degrees, however very unusual for us to have been outside on the 6th of January without even a jacket.

It took a couple of days to get everything together for us and finally after a few hour postponement for the parade it all came together yesterday morning and went down to meet our friends at 11:30am. We met Tracey and Denny along with a couple other nurses down on South Street to get ready for the parade. We were also met by Cathy Gandolfo from the Philadelphia ABC news.

We were interviewed and then Jack joined the parade and "strutted" down Broad St. in the annual Mummer's Parade. This segment was aired last night in Philadelphia on the 6:00 and 11:00 news to tell of how it came about for Jack to be a part of this New Year's Celebration with the Mummers, visit http://abclocal.go.com/wpvi/story?section=local&id=4911361 and see video of the actual interview that was on the news last night. (they goofed on Jack's website, they put .com and it's .org.)

Jack's first "Strut" down Broad St.

Tina and Jack doing the "Mummer's Strut"

Clockwise from Jack, Denny, Lori, Chris, Tracey and Kim - Jack's Strut Buddies

Jack and his Mummer Friend Ed, who carried him while they were on TV

Jack's new friends, Liam and Conner (Tracey's nephews!)

Happy New Year!

We want to wish everyone a very Happy Healthy New Year and we want to Thank everyone for always keeping us in your prayers.

Because of the lousey weather we had today, the Mummer Parade was cancelled. It all worked out because Jack really isn't feeling well, his belly has been hurting him and Christina isn't feeling that well either. She's got a little cough but I'm sure she's getting a little schoolitis. I don't blame her, I'd hate to go back to school tomorrow, too. So, Roy and Christina left here around 2:00 which got them home at a decent hour this evening so she can get some rest and get ready for school.

Thanks again for all the prayers. God Bless.