December 2006 Archives

It's almost the end of 2006 and we can't wait to end this year and look forward to a brand new year that will be a very healthy year for everyone.

Ok, let me rewind.....
Tuesday we were supposed to go to clinic but Roy and I woke up and said, do we really have to go? We called Ginny in clinic and asked her if it all possible could we come in tomorrow (wednesday)? The kids so wanted to play with their gifts and we just wanted to have one more day home knowing we would be getting admitted and don't know how long we will be in Philly for this time. So, an hour later Ginny called and said that Dr. Bunin said that there was nothing planned but we HAVE to come in tomorrow. We got a late start on Wednesday it took us 3 hours and finally got down to Philly around 2:30 and we were admitted shortly thereafter.

Jack was scheduled for the PICC for Thursday at 1:00 and we knew that was going to be a very difficult morning with him not being able to eat or drink until after the procedure. Well, difficult was not the word. It was horrendous. He cried all morning and afternoon up until he was sedated. Roy did a great job trying to keeping Jack as calm as possible not to mention the fact that Jack really didn't even want me around if you could believe that one. Another thing that helped with keeping Jack calm was that his Pop Pop from NY came down to see him (by Jack's request) and he came bearing Christina and Jack's Christmas gifts. Jack got a Lionel Thomas & Friends train track and Christina got a pair of "Heelys".....(Thanks alot Pop Pop!). Even in spite of Jack's bad mood, he was happy to have his grandfathers company and to get his gift, now all we have to do is find a way to set it up here, if not it will get set up when we get home.

Anyway, long story short, Jack finally got his line and he started eating as soon as he got back to his room. He did well after his sedation and ate like a champ and TPN was started shortly after coming back to his room. Let's all pray that this will be the last time and that this gets him over the hump to getting his nutrition, gut and recovery from his transplant better and most of all NO MORE INFECTIONS! They are treating Jack as though he as an active infection in hopes that that will keep him from getting one. Like I said, please pray.

We started out in room 3C05 which is a smaller room and is good for short stays but today we were moved to room 3C14, our orignal transplant room and we feel like we're back home again. My feeling is maybe we need to end where we started and hopefully this will be the last stay.

Now for the other news......Roy and I have known for sometime but we didn't want to make a big deal about it until we knew how Jack was doing and now since New Years is here and we know Jack will be here we can tell everyone. Jack is officially an honorary MUMMER. About 2 months ago Tracey (our great nurse who loves Jack) came and told Jack about the Mummer parade and how her nephews were in last years parade and asked him if he wanted to be in it and of course he said yes. Since then it has become quite an experience. We were interview by a reporter from the MummerTime Magazine and we sent pictures and Jack's story is one of the articles in the Magazine which just came out this week. Tracey said she will be getting us some copies and once I'm home I will scan it into our computer and try and post it in the blog. Jack is part of the Comic Division in the Wench Brigade. (see: www.mummertime.com) We have already arranged for a six hour pass fout of the hospital on Monday to go to the parade and see the show at the convention center and we will be interviewed again by Philly's local channel 29. I don't know if it is telecasted in everyone's area, but check your guide for details about the Mummer Parade.

Jack came home from the hospital yesterday afternoon and what a joy it was to be all together for Christmas. He was very tired and wanted to go to bed early which was fine especially with the big day ahead of him. We got Christina to bed fairly early and wouldn't you know it, she was up at 5:00am very anxious to see if Santa came. Luckily I was able to settle her down and watch TV until 8:00 when she was finally able to wake us all up. Jack was ready to go.....as a matter of fact he went into our livingroom before all of us with no lights on and was in complete awe at the gifts under the tree especially the bicycle that Santa brought him. The unfortunate thing is that Roy and I didn't even get to see his first reaction but boy the second reaction was as good as the first. Needless to say, we all followed in and the ripping began to happen......Both kids truely loved their presents and of course got what they wanted.......

But, no present will compare to the joy Santa then brought my children.......HIMSELF. Yes, I said Himself. Santa came to our house at around 2:00 this afternoon to see Jack and Christina. He knew that Jack got out of the hospital yesterday and really wanted to make Jack's Christmas extra special. Yes, he is the real thing!!!!!!!!! Santa brings such joy to many children who are unable to come out and see him and even after his long trip around the world bringing gifts he even finds time to visit those children who could use the uplift and I am so happy that he came to make Jack feel better. At first Jack was really great with Santa and even took him outside for a little while but then Jack started to fade and get irritible and we all came back inside. What a wonderful, caring, giving man and I am so glad to have him in our lives.

Tomorrow will be just like every other Tuesday. Clinic in the morning, but this time we may not be coming home. Jack is more then likely going to be admitted again and he will probably be getting another central line this week to help with his nutrition. He has gotten even thinner and we are battling something fierce to get him to gain. The C-Diff made things even more difficult, but we have been doing our best and keep praying for the extra miracle. If Jack doesn't get admitted tomorrow, that will be our miracle. However, whatever is best for him we will do. Thank you all again for always keeping us in your prayers.

God Bless Everyone and Merry Christmas!

Santa Walking Up Our Driveway

The Joy Santa Gave to Christina and Jack (is Jack comtemplating pulling Santa's hat off? - that little devil)

Santa comforting Jack.

Hey, Look at Jack with Grey Hair....Santa making Jack laugh

Santa saying Good-Bye to Christina

Thursday, December 21, 2006

After the debate of a central line yesterday, I still wasn't sure if that was the right decision but my gut feeling was to wait. At around 2:30 this afternoon Dr. Bunin came into our room and said "Good News! Jack has C-diff". Now most people would cringe and be very upset but this was truely "Music to my ears". Clostridium Difficile (not sure of the spelling) is something we are very familiar with. Jack has had at least 16 bouts of this and it pretty much goes along with any infection he had. C-diff is an infection that takes away the "good" bacteria in your gut and makes you have smelly, awful watery stools. Jack's bowel movements haven't been that awful, but bad enough, so last night I asked if they could run a c-diff culture and low and behold it came back positive. This answers a lot of questions for us. Jack is wasting his electrolytes by all of his stool output and also anything we put in his stomach, i.e. formula, food, med's are just not being absorbed properly because of the c-diff. So now we start flagel, which is an oral medication used to help clear this up. Hopefully if all goes well, the flagel will kick in and it will help his gut feel better and maybe, just maybe we may even escape getting a line next week. If his gut gets better and he starts to feel better, the food and formula may start to stick and with God's help he will start to gain weight again. I am praying very hard.

Thank you for the prayers and this may be the start of our Christmas miracle.

This is Jack's favorite Christmas song, please enjoy!!!
http://members.shaw.ca/cybernana/funpage/dominick/dominick.htm

And the count down begins.........

It's 5 days before Christmas and where are we????? We're back in CHOP.
Yesterday we came down here for clinic for Jack to get his usual blood work and he was due for IVIG. To everyone's amazement Jack's counts have gone up quite a bit from last week however, his electrolytes are not good. He was in desperate need of Potasium Phosphate and Magnesium so it was decided to give him what he needed which kept us here until 5:30pm and we didn't get home until 8:00pm. He was very tired when we got home and just wasn't feeling right. When he woke up this morning he was complaining of stomach cramps which isn't all that unusual and we didn't have that great of a night with stool output. Jack actually said to me, "mommy, I think I'm dehydrated". Now, for my 4 year old son to say that to me made me really check him out and know he was right. I got him something to drink, got Christina off to school and sat with him for a while before finally making the decision that I really should take him back to the hospital for fluid. Not to mention that he really is not doing well nutritionally and I am at a point where I can't do it myself and I know that he really needs another central line.

Once I got down here to CHOP a plan was in place to get a line put in tomorrow and start IV nutrition and possibly go home Sunday with TPN. I was already beside myself that I was coming back here and that just put me over the edge. I know he needs this, but I don't have a good feeling about putting the line in and rushing it for tomorrow. I talked with Dr. Bunin several times and she told me that we don't have much of a choice and Jack really needs this and that his phosphate is so low that he could actually have a heart attack with that low of a level. My arguement began with why couldn't we plan a line for next week and for the rest of this week give him what he needs in fluids and tank him up and then re-admit us next week with a full plan in place including bringing GI back into the mix and having Jack get another scope to see exactly why he is loosing these electrolytes. After much debate Dr. Bunin agreed to tanking Jack up sending us home Sunday and coming back either Tuesday or Wednesday.

It's very difficult to make these decisions. I've spent more of today crying over which is the right choice, which is going to put Jack at less of a risk? So here I sit, tired of coming down to Philly, trying to understand why Jack's gut issues just aren't getting back and worrying if this is the right choice, not to mention Christmas being 5 days away and just wanting to be home.

So the big question is, will we be home for Christmas? Well right now it's yes and as long as Jack behaves and doesn't spike any fevers we will be in the clear to go home. I've gotten as much as I can done for the holiday but still have some odds and ends to finish up and if I don't get it done, Oh Well!!!!!!

I really need that Christmas miracle, so with all the prayers you have been sending our way, please pray for the miracle that Jack will get through this and that his nutrition will get better.

Thank You and God Bless

Before I start, I would like to send condolences out to the family of Val Kahn. Val passed away peacfully on Friday night. Some of you may have known Val and those who didn't, you would wish you did. Val was a very close friend of my mothers and a close friend to Charlotte, myself & the kids. Val was a terrific person with a big heart, she was also a big fan of Jack & Christina. She will truly be missed. I also know now that Jack has another angel looking over him. Our sympathies go out Val's children Lucy, Karen and Ken and their families.

Trains, Trains, Trains

Well where to begin on this one. We got a call mid - week from our friends Allen Brady and his wife Lynne. Allen wanted to know if we would like to take Jack up to Kraft Foods (formerly Nabisco) on Sunday to see the train display. Lynne works at Kraft and every holiday season
they set up a huge train display. As most of you know Jack is a big Thomas the Tank Engine Fan. So this was right up his alley as you can see from the smile on his face.

The display is huge and runs about six trains simultaniously, it has all these buttons around the edges that allow it to be interactive. Press one button it lights a light, press another a whistle goes off, press another the RailRoad crossing gate comes down. It was totally awesome.

We can't thank Allen and Lynne enough for inviting us and bringing a smile to Jack's face. They are very special people. They got just as much joy out of seeing Jack play with the trains as we did.

Santa is the Best!!! I made a phone call the other day to see if we could get a private sitting with Santa because of Jack not being able to be in crowds and we got to see him this morning. We met Santa at 8:00 am at the Wayne Townecenter Mall in Wayne, NJ and he sat and talked with the kids and they were both in such great awe. The is the same Santa who went out of his way when Jack was first hospitalized in 2002 and Christina wouldn't go and see him without her baby brother. He is the most wonderful, caring, giving man you could ever meet. After he saw us he was on his way to St. Joseph's Hospital in Paterson, NJ to see the children there. Jack hopped right on his lap and told him what he wanted for Christmas. I think Christina thought she was too big at first but he assured her she could sit, too. Now I feel like the holidays are here. There is nothing like seeing the joy on your childrens face when they see Santa, not to mention when mommy gets all teary eyed to see their joy.......

God Bless to all!!!

Telling Santa what he wants for Christmas

Christina deciding if she should sit on Santa's lap

The joy that Santa brought to Christina and Jack

We're home, again!!!!

Dr. Bunin made some changes in Jack's med's and we're hoping that this change will prevent him from getting any more infections. Please pray!!

Thank you all for always remembering us and we want to wish everyone a joyous holiday season. God Bless.

It's 12 days before Christmas, are YOU ready????????

I spent some quality time with Christina yesterday, which was much needed for both of us. We did a little Christmas shopping for gifts for their teachers and went for diner at this BBQ place call "Famous Dave's" and it was awesome and then we went back to the Ronald McDonald House and watched "Pirates of the Carribean". We hung out this morning, cleaned up our room and then came back here to the hospital and spent time with Daddy and Jack before she and daddy decided it was time to go back home.

So here's the scoop. We finally got a name for the bug that caused this awful infection and yesterday we found out what antibiotic it's sensitive to. We found that there are 2 oral antibiotics that can treat this bug and now we are waiting on Dr. Bunin and the Infectious Disease Team to decide which one and how long they still want to treat with IV antibiotics and then switch to oral to send us home.

One of the other issues we discussed before the weekend was why this is happening so frequently and what are we going to do to help prevent these crazy infections from continuing to happen and it was decided that Jack would start getting IVIG's every two weeks opposed to every 4. By getting the IVIG's every 2 weeks it will help his T and B cell function to help fight infection and hopefully help keep him from getting these infections. This bug that gave him the infection was explained to me that it lives in the guts of all of us. We, who have normal functioning immune systems have the ability to fight off these bugs if they get into our blood stream but with Jack or someone who has a compromised immune system the IVIG's may be the only way to help ward off these bugs until their immune system is able to do it on it's own. So that's the game plan all we need is for Jack to behave to prayers are definitely needed.

As always, Thank You for keeping us in your thoughts and prayers.

[Help Others} with all the strength and energy that God supplies. (1 Peter 4:11)

Jack had clinic yesterday and it was a long day. His counts when down slightly, but not enough to really cause alarm and he got his dose of IVIG's and Pantamadine and we finally got home at 8:00pm.

So just when we thought that his counts were doing better and he's eating a little better, however no weight gain, Jack decided to spike a 102 temperature and he had a bright red leg at 3:30 this morning. As soon as I saw his leg and felt how warm he was I knew we didn't have a choice and right away thought cellulitis again. So I woke up Roy and called down to CHOP and it was decided that we just get in the car and go. Roy ended up taking Jack alone so I could be with my mom this morning since today marked the 1 year anniversary of my dad's passing. I had planned a small gathering for graveside prayers with my pastor, Rev. Jeff Markay of the Caldwell United Methodist Church and Roy didn't want me to miss it. Thanks Babe for taking Jack for me so I can go to the cemetary. Thanks Rev. Jeff for making this difficult day a little more bearable with prayers.

So, here I sit in the BMT floor with all our good friends, Derrick, Linda, Tracey, Renee, Precious, Lori, Denny, Kim, Jessica, Kate, Nicole, Carolina and more that I didn't name. Everyone say's "what are you doing back again?" and I just shrug my shoulders. My poor baby isn't feeling well and his leg is really hurting so I'm sure it'll be another day before he really starts to feel better. And, Christina, what a good girl she is, she's keeping her Oma company on this difficult day and she even did her homework without anyone having to tell her. She's such a good girl. Love you Tina!!!!

God Bless everyone and please keep those prayers coming.