March 2008 Archives

After a few days away we remain anxious and exhausted. Simons symptoms seemed to have gotton worse. I wonder if taking him off of any meds was a good idea. That is the problem with all of this everyone is guessing and noone can tell us the right thing to do to help him. He continues to have water diarrhea. It seemed to get better and then the last 24 hours has been awful. We are on 10+ weeks of this and the docs say the remicaid is the next step but we are so torn with do we do it and risk giving him something else that could kill him or try to wait it out. Its in Gods hands but our minds are heavy and confused and angry. I wish I could be the person who is accepting of "its out of our hands" but I am opposite so I search and call and ask and search and call and ask and get very frustrated by it all b/c in the end Simon is still suffering and I cannot stand to see it. Please pray hard for our little man, who needs all the prayers for complete protection and healing of his gut. This could be a life long issue for him and it breaks my heart to think how he can possibly live normally with bouts of 12+ weeks of diarrhea on a cycling basis. It is really so much to think about. Thanks or sticking with us. Please pray for Simon. thanks. Tracy And can I please put out a YEAH Kyle for taking FIRST in state in gymnastics today. Way to Go Kyle - We Love Ya.

This morning we woke up, got dressed, cleaned our rooms and opened the blinds to let the light shine in. I don't know if I feel a sense of renewal because I actually got a bit a sleep last night or its just the fact that our son slept through the night with no pain and no vomitting but whatever is making me feel hopeful I am going with it today. The weekend was rough. Simon started if off by pulling out his port needle in his chest Friday night after we returned from a classmate of Isabels for egg coloring. Dave and I made the executive decision to have me reaccess the port instead of taking him to childrens for a very long ordeal. It was my first time and I have to say while my hands sweat profusely inside the sterile gloves and my heart raced I nailed in the first go around and got blood return. Always a good things with accessing the port. From there we hooked him up and went off to bed. He awoke at 4:30 am vomitting over and over again. This continued sat night and sunday night. At that point I figured it had to be some med b/c he is fine during the day. His eating has taken a dive even while still on iv steroids. So not sure what to make of all of it. The diarrhea is still heavy and liquid so seems the only improvement we are seeing is the stomach pain. We stopped two antibiotics last night due to the gi doc wanting to try it to see if his stomach would allow for no vomitting. Hopefully it has worked. Since he is not improving we talked of doing the remicaid. I am of the mind set to stick it out another week on iv steroids and pray for the best. I don't want to go there. But that leaves us without any solution to get him under control. So tough times of coming up with a plan. We are off to chidrens (all 4 of us as dave is working) for pentamadine and consultations. Please pray for relief and for life to get easier. Thanks to all who have reached out. I have been in a dark place and doing my best to put on a good face to get through it all so thank you for your understanding. Love Tracy God Bless

Yesterday we spent our morning getting an upper gi with contrast to see if we could determine where Simons pain was coming from. We prayed there would be no signs of chrons and that prayer was answered. Unfortunately we have no official reason why there is so much pain besides the inflammation in the colon along with the ulcers. The oral steroids he has been on is not helping. In addition his labs are all over the place putting platlets at an all time high which indicates alot of inflammation still persisting. Since Simon has not had relief of symptoms, diarrhea and pain, I knew nothing inside had changed from the new meds introduced. So we were left with what to do. There is so much going on between doctors and myself now that I can't even keep track of it all. Bottom line so as not to bore you all with how we even came to this decision is we are starting iv steroids at home tomorrow. Yes just another thing to add to my already full day of caring for simon. He is still hooked up to tpn nutrition all night and that will continue for the next 7 days at least. Our goal was to get him off the iv so his chest could get a rest from the needle sticking out of it but that is not going to be anytime soon. He is getting about 8 or more severe stomach aches a day and cries out loud and ask me to pick him up until it passes. He is waking 2-3 times a night with the same problem. It is hard to watch. All of us have been awaken by a sick child in the night. This has been going on again for over 6 weeks now for all of us. It is painful to be a part of and know there is nothing you can or are doing that is helping your son. Simons immune suppression will be at an all time high now. He is very open to catching things and I am walking around here with a major head cold, cough so that is not a good thing. Our team of doctors is working hard for answers. If this does not help we are going to have to turn to stronger drugs that have very serious side affects including possibilities of cancer, TB and death. Its not an easy place. I have not felt hopeless but I have felt close. We have been through so much to make Simon better and still the struggle goes on and gets worse instead of better. Not to mention how his numbers from the transplant have looked lately, which is not in the upward direction. Yesterday our dermatologist forwarded us a copy of the paper he did on Simon that finally got published. It was a hard read. Hard because it took me back to the beginning and to a place where I realized the doctors do not know enough about Simons disease to know if he will ever be ok. If anyone is interested in reading it e mail me and I can forward it to you. Its not easy to read with all the medical terminology even for us and we have been studing this disease and its terminology for 2 1/2 years.

We ask that when you sit down at your dinner table with your family for the next week please ask for a special prayer of healing for Simons gi issues once and for all so we can move forward sometime soon and see Simon feeling great all around. This by far is the hardest thing to live through with your child never getting a break to total healing but always taking one step forward to 100 steps back. We need your strength and prayers. God Bless Tracy

First off forgive me if I do not call those of you who asked me to to let you know how today went. My sister was the only one who I called and she probably felt my anger more than she should have. Sorry neice. We did not have such a good day. There were issues from the get go starting with Simons port not drawing back and having to be replaced and tpa added to it to make it work. He had some issues while under and they had to put a tube down his throat which has left him very hoarse and sore and breathing very fast with a fever. Like I said nothhing went well today. We were moved 3 times from pre-procedure to post and I saw an accident with another child at the hospital that actually put me in a crying fit because it surfaced simons skull fracture and the exact sound I heard when my sons head hit the floor just like I saw this little boys head do. It was a horrific day. So after all of this I got the news that 1) simon has numerous ulcers in his colon and 2) his vntr donor vs. his cells is down again. I just about lost my mind today and I was alone so it was a bit tough to deal with. Simon still has not calmed down and has tremendous pain in his stomach. So what does this mean. Well we have started him on prednisone pretty high does to try and reduce the inflammation. It didn't work last time so I'm not expecting to see much of a change. I am for using the remicaid as it worked last time, can just be stopped not tappered, has less side affects and I'm hoping we can use a smaller does. Given the fact that his insides look way worse than they did last time the goal will be to get him in remission and use lower doses of whatever to keep him there so this doesn't happen again. It was explained to me that Simons own body is attacking himself in his gut, just like an auto-immune disease due probably in large part to the non-working NEMO that he has in his gut and skin. It will suppress his immune system and make him susceptable to infection again. After lengthly conversations I was told to let him get out a bit and socialize for his sake of normalcy given that it is not a crowded, germy place, which is all around right now. It is a hard reality for us to have all of this right now. We were 2 weeks from being able to give him immunization titers to see where we stood with this new immune system and now we are going back on immune suppressants so that is not possible. We also are worrying about the consistent drop with every vntr measure. Its a crappy feeling and watching Simon in so much pain and discomfort just keeps you knowing he needs additional medical intervention. I'm going to absorb it all and go into clinic on monday with questions and a plan that we want to go with. It is what we do and will continue to do for Simons sake. Please keep him and our whole family in your prayers. With little sleep sometimes even small disappointments are hard to take but this really was not what I wanted to hear today. We will go forward and try to enjoy the fun fair at school tomorrow but in my mind always will be a cure and a normal life for Simon. Thanks to Janet for all her help the past two days. Without it I would have not been able to get through. Thank you. God Bless. Tracy