February 2008 Archives
It has been a very frustrating stay at the hospital this go around. Simon has had no relief from diarrhea or stomach pain. The thinking is that he has alot of inflammation caused by colitis that we need to get under control and find a med cycle that will keep it at bay. He is sitting around the hospital pretty lifeless (which is very hard to see since he is such a pistol most of the time), crying out in pain that his stomach hurts and going poop. He will nibble on little things and drink very little because when he does, it hurts. We finally started a med to try and topically get the inflammation under control. It was not available at childrens as it is usually not used in pediatrics but he is allergic to the one that they do use, so nothing is easy with all of this. It also only comes in capsule form so we have to open the horse pill size capsule and pour it onto food or send it through the g-tube and it causing discoloring. The other issue is that it will take one to four weeks for this med to kick in and possibly help. We are caught in between a rock and a hard place because we all want to find something that is non-immune suppressive so that it will not affect his transplant but we are not sure anything will be strong enough other than immune suppressants to get it under control. Since this seems to be a reoccurring issue it is now being viewed as a chronic problem, which he could have his whole life and have to take meds or immune suppressants for. All of this has me a bit down. When you enter the world of transplant you go into it thinking okay this will not be easy and it will be a tough year but the reality of it all is that transplant may be your only chance for a cure but it also comes with alot of attached problems that can be hard to fix and deal with. Simon is receiving TPN which is IV nutrition and we will continue to give that to him at home for weeks to come. It is the hope of the doctors and us that he will be able to rebound with the anti-inflammatory gut medicine that was started today but honestly we were told to expect to have to reintroduce the remicaid which he was on a few months back for the same issue and is a pretty big gun immune suppressant. He is scheduled for yet another scope on March 10th to make sure we are treating all of this correctly and to make sure we know it is exactly this. We absolutely need to rule out GVHD, which one can get post transplant for up to five years and would have to be treated a bit differently. So we are going to bring simon home. I ask that you make a solid prayer that the med started today gives him relief from the diarrhea and stomach pain and that he can start to get back to where he was at before all of this started almost 4 weeks ago. We always apprecaite all the calls and kindness that has been shown to us. It is never easy to be separated from each other and have a mountain of worry on top of it all and all the prayers and nice things and calls always make us feel loved. I'm sorry I have not returned calls, I just need some time to absorb it all and get my mind set to accept and conquer it. God Bless you all for a wonderful weekend. Tracy
Well we are back in a place I thought I'd never have to be again, honestly. Simon was admitted this afternoon. He is dehydrated and has some underlying infection going on. His white count is triple what it is usually. I was at clinic yesterday and thought for sure they would keep him but I was sent home, a little leary on it too. His white count and platelets were high yesterday and I was concerned. Today they are even higher. He was so weak and limp today I just couldn't take it and knew he would not get better at home. They are starting iv fluids and iv antibiotics to try and get rid of the infection. Dave is staying tonight as I am still a little under the weather and hoping to get some sleep which might be hard to do with the worry in my mind right now. I had hoped he would get a few days of gut rest, fluids and be back home and now with an infection my mind is racing. He doesn't want to be there. He is crying saying I want to go home. Its heartbreaking. Please pray that this is a short stay and that all comes out completely well in the end of our stay. I didn't realize the anxiety associated by me to the hospital and I can tell you its much greater for me than I thought. We welcome your heavy prayers for Simon tonight. Thanks Tracy
Well this has not been an easy weekend. I got the flu friday night and was up all night and the headache from it still persists. I stayed locked in my bedroom all day yesterday trying to avoid passing the germs but I'm afraid they were already in the house. I don't want anyone to feel the way I have the last 36 hours. Several times last night simon awoke with headache and dry heaving, which I'm not sure about since he ate and drank some yesterday. He did trip over sophie as he was running through the house and banged his head on the door so now we are concerned it might be from that and may be heading to the ER with him. We are always afraid of his head ever since he had the lineal skull fracture in the hospital. After Dave and I have been up with him on and off since 11:30 last night he and dave are resting and I'm sitting here on WedMd trying to find answers as to what I should do. To top it off Marriana woke at 5:30 with a nose bleed. This happens to her more than I think it should and I will be addressing this at my appt. on Monday as I always get scared due to the donation of stem cells she gave twice in a 6 month period. So I ask, again, for some solid prayers that my whole family recovers quickly and Simon does not have any long term affects from any of my flu or his bump on the head. Its already hard to see him heaving over the sink and nothing coming out to give him relief. Thank you and God Bless. Tracy
I'm still waiting on photos from our trip and will post more over the weekend. We had a clinic visit on Monday and have been in contact several more times with GI. Things are slightly improved. When I tell you Simon has diarrhea it is not your typical viral thing that will be gone in one week and we continue to battle through it. We are approaching week 3 now. The worst part I think is that after he eats, and he seems hungry, but he gets these terrible stomach pains and well, then he goes and goes. sorry for the graphics. It seems to have thickened a bit and while its not as many times early in the day the late afternoon and evening are the busiest. We keep at the antibiotic that he will be on for a month before a two week off period and I think its helping some but wow its definately a work in progress. We got his vntrs back and I was a bit disappointed or worried I guess. While they seem virtually the same some of the numbers are down and its been this way the last few times. A few percent decline every time we do them. It makes no sense to me anymore. His igg level is up to 734 which for us is huge. No IVIG infusions again and that means hes making b cells which again are huge. The issue is that we don't know whose they are (simons or marrianas) and if they are functioning. So until we get all testing done in March I think it will be a scary thought in the back of my head. I realize now that the worry will continue whether we really want it to be there or not and we do try our best to carry on with the normal activiites of life.
I'd like to ask for special prayers today and through the weekend for our very dear friend Jacob who is battling GVHD and having a time of it. Please pray that the treatment course he is now on is the cure-all for him and his family so they can move forward for complete healing. While it seems you go through the hardest part with the transplant in the hospital and you come home to battle the biggest things of all. I think its easy to assume we are home and all is well but all transplant families battle such a long, long recovery wherein every day is a challenge and every day brings something new to deal with or to pray your way through. Its taxing really. My heart goes out to every transplant family no matter what type it is. I also ask that you continue to pray for Simon and his GI issues to resolve along with what appears to be another round of skin flaring up. Its vicious cycle. Have a good weekend. God Bless you all. Tracy
I'd like to ask for special prayers today and through the weekend for our very dear friend Jacob who is battling GVHD and having a time of it. Please pray that the treatment course he is now on is the cure-all for him and his family so they can move forward for complete healing. While it seems you go through the hardest part with the transplant in the hospital and you come home to battle the biggest things of all. I think its easy to assume we are home and all is well but all transplant families battle such a long, long recovery wherein every day is a challenge and every day brings something new to deal with or to pray your way through. Its taxing really. My heart goes out to every transplant family no matter what type it is. I also ask that you continue to pray for Simon and his GI issues to resolve along with what appears to be another round of skin flaring up. Its vicious cycle. Have a good weekend. God Bless you all. Tracy
Well I finally and finding the time and energy to post regarding our trip. First off let me say a big thank you to Special Wish Foundation and Give Kids the World Village. The trip they put together for us left no stone unturned when it came to going to the parks and keeping everyone happy, fed and loving all the characters and activiites they had to entertain the kids. The kids enjoyed themselves. They loved all the theme parks and since we were given a special pass to go to the front of every line for rides and character photos the girls got to a point that if we had to wait for anything they wanted to know why. Spoiled little princesses. The girls did the bibbty bobbity boutique and felt like real princesses. Everyone throughout the park kept asking me if they were in the pirates and princess show. They looked beautiful. Simon loved seeing all the characters and going on the little rides and slides. We also especially loved the shamu show and the seal show at sea world. Like I said we had tickets for anything you would want to do and in addition had things at the villa every day and night. I have posted a few photos but the day we got there our digital camera broke so we had to buy alot of disposable cameras which are not developed yet. We also lost footage to the first 2 day in our video camera so not sure what we will end up with. Our trip was good but also carried stress due to Simons reoccurring diarrhea and skin issues. Its not your typical healthy kid diarrhea and last time he has it it lasted 12 weeks and he had to go on immune suppressants to stop it. That sets us back every time for seeing how his immune function is and if it will work properly. So we ended up at a childrens hospital in Orlando one day. He is down 5+ pounds and that is huge on him. NOTHING will say in him not even pedilyte. So today we go to clinic. Hopeing he is not dehydrated and does not get admitted. Please continue to pray for him to regain his GI system and to have full healing so we can move forward. It has been 3 months since the last flair up. Our hope is that over time he will have fewer and fewer. Its hard b/c noone knows. The good NEMO cells in his blood and the bad NEMO cells in his gut and skin are fighting. And since 70% of your immune system is in your gut we are at a disadvantage here.
I have to run but I wanted to post something and a few photos. I hope to show more photos on this site and our cure4simon.org flickr photo site. It will take me at least a week to catch up on that. Thank you for sticking with us and keep praying, we need prayers stronger than ever right now. I wanted to welcome Baby Margo home. After the first 4 months of her life at Childrens she finally got to go home. Pray for strength for her to heal and her parents to tuff it through all the extreme medical care that is now placed upon them. God Bless Love Tracy and David
I have to run but I wanted to post something and a few photos. I hope to show more photos on this site and our cure4simon.org flickr photo site. It will take me at least a week to catch up on that. Thank you for sticking with us and keep praying, we need prayers stronger than ever right now. I wanted to welcome Baby Margo home. After the first 4 months of her life at Childrens she finally got to go home. Pray for strength for her to heal and her parents to tuff it through all the extreme medical care that is now placed upon them. God Bless Love Tracy and David
We are gearing up to head out of town. I cannot even begin to tell you how excited everyone in our house is. The girls are asking every night "how many more days mom?" and all Simon can think about it animal kingdom and buzz lightyear. It is the trip of a lifetime. We are so lucky to be going. I think back to November 06 when we were digging into the second transplant and praying and hoping second time around it would work. Its amazing how far we have come from the initial diagnosis. When I think about it nothing is foggy about the day we found out Simon had NEMO. I still remember the call, I still remember very clearly how I broke down at the hospital after initally meeting Dr. Uzell who diagnosed him and Daves mom hugging me and crying with me. It is like it was yesterday and I still cry about it. So believe me when I say we know how lucky we are right now. We know that we have come a long way and we are so in touch with how extremely lucky we are to even be going on this trip. I never thought I would have the strength to get through it all. Simon and David and the support of all our family, friends, and new friends we have met because of all of this, are what got us through it. We are not out of the woods. Not by a long shot, but in our hearts, this week and next, we are overwhelemly estatic about where we are and so thankful for so very much.
We met with Laura, our Special Wish coordinator, on Sunday. She was and has been through all of this planning, wonderful, kind, caring and going over the top to make sure our family would have everything we needed to enjoy this trip. She even called today to ask if I had a camera to take along b/c she had read something in my blog that led her to believe we did not. That is a caring person. Before all of this we didn't realize how many giving, loving people who were strangers to us would become life long friends. We have honestly been blessed with much more than life could ever offer.
So we will be heading out. I am hoping I can drop a quick line or two while we are gone to let everyone know how the trip is going. We ask that you pray earnestly for us to have a very very healthy trip. For all things to go well, weather to be perfect and for our flights to be quick and uneventful. We are so lucky to have all of you in our lives and to care so much about us. Thank you for your frienship, prayers and love. Talk to you from Disney. YEAH!!!!!!! God Bless, Tracy and David
We met with Laura, our Special Wish coordinator, on Sunday. She was and has been through all of this planning, wonderful, kind, caring and going over the top to make sure our family would have everything we needed to enjoy this trip. She even called today to ask if I had a camera to take along b/c she had read something in my blog that led her to believe we did not. That is a caring person. Before all of this we didn't realize how many giving, loving people who were strangers to us would become life long friends. We have honestly been blessed with much more than life could ever offer.
So we will be heading out. I am hoping I can drop a quick line or two while we are gone to let everyone know how the trip is going. We ask that you pray earnestly for us to have a very very healthy trip. For all things to go well, weather to be perfect and for our flights to be quick and uneventful. We are so lucky to have all of you in our lives and to care so much about us. Thank you for your frienship, prayers and love. Talk to you from Disney. YEAH!!!!!!! God Bless, Tracy and David
