April 2008 Archives
Just a quick note as I need to get some sleep. Isa was up throwing up last night and simon decided to just get up to keep us company and he never went back to sleep from 3 am. Anyway, this week at clinic simons labs looked pretty good. We decided after a long week and lengthy discussions not to go ahead with the remicaid. We felt his symptoms were not as bad as they were in February and we are really scared to give it to him. Of course since this decision his stooling has increased and today he went more than hes gone in a few days. His butt is now broken down again to where you can't touch it. Its like if you miss it one time and it sits in his diaper for 5 extra minutes thats all it takes, and I am constantly checking him. Doesn't matter how much cream you put on. So tonight he is uncomfortable and, of course, I question my gut as to not go with the remicaid. Just not sure what is right anymore. We ask that you pray for relief for Simon with this GI issue and for our dear friend Jacob with his skin issues. Seems our boys are having the hardest time of it. Thanks for checking in. Tracy
Well it looks like we are going to have to go ahead and give simon the remicaid drug to help him get better. He is not improving at all with the diarrhea. I am changing him for that 7-10 times a day and we finally just got his butt back to where we can touch it without him screaming. How we'll ever potty train him like this is beyond me. I'm not sure he is absorbing much because of the output. I took him off dairy for 48 hours but still nothing much has changed. He really has not grown in height or weight for over 8 months or more. It is such a hard decision given what we know the remicaid can cause but its also so hard to continue to watch simon go through this. I have noticed some weakness in his right side and he is actually favoring it when he runs so I am pushing to get him off the steroids. Noone really thinks they have made one bit of difference anyway for the better. I am consulting with the docs to see what dosing we are going to use for the remicaid and how often he will need it and for how long. Unfortuantely it is not a one time dose of it and we are ok, it is spread out at the same dose for a period of time and hopefully he will not need as much once we get it under control. At any case its given through the IV so that puts us to two IV infusions of different meds through his chest port. The severe possible side affects of lymphomia and death never leave my mind. Never. I've had an especially hard time the last two weeks trying to make a decision and do whats best for Simon and a dear friend of mine who knows all too well how it feels to be in this type of situation put it to me this way "we are doing a great job but things are not in our own hands. We only do what we thik is best for our sons and try to conform as much as we can. God sent you this angel because he trusts in you, he knows you are a very special mom that can handle this, make the right decisions". I hope she is right. Please pray for Simon, the love is two fold. God Bless. Tracy
I am posting just to ask for prayers tonight. We have had a week of things increasing for simon in the stooling area and its all liquid. In addition to that the last two days hes had this little cough. I chalked it up to just a little tickle but his appetitie too decreased and tonight it seems the cycle may be starting over. He stood over the toilet vomitting. I am very sad and frustrated that none of the meds have worked at all and we seem to be back in the same place we were weeks ago. Since this has been going on since January only after a 3 month break from the october 12 weeks of this, we are coming to the realization that noone can fix this and we might have to live indefinately with it. It really is hard to watch someone so amazing go through so much day after day. Please pray that all of this is not cycling again and that we can find a way to heal simon. The remicaid drug gets dicussed everyday in this house but with it we discuss it possibly causing severe long term issues so what do we do? we still have not come to terms with that decision. Please put Margo in your prayers again too as she is back in the PICU with some pretty severe issues. We pray that all Gods children are healed. God Bless, hug your kids often and long. Tracy
We went to clinic yesterday and had Simons post transplant echo done on his heart. Looked good so since we have not heard from anyone we are assuming everything is clear. We discussed what the next steps will be for us since simon is still on such a high dose of steroids. I actually tapered it down myself last weekend after he kept waking at 3am for the day, the following day and would not go back to sleep or nap until 7pm the next night. It was brutal. He also was very mean and I couldn't take it anymore. So that seemed to go ok. We have seen an increase in the stooling since we did this and his dose is still pretty high. The gi doc doesn't think the steroids will be enough since he doesn't seem to respond to it well and it is messing with his new immune system. So we have to figure out if it doesn't get better do we do the remicaid? Dave and I are okay waiting right now b/c he is not in pain and the stooling isn't overwhelming just disappointing at this point. I asked for a week off so we will not return until the 28th. At that appointment he will get pentamadine and a dose of immunization shot that combines a few to see if he responds to any of them and creates antibodies. Please pray that he does because it will be a big indicator as to what his new immune system is doing. We pray it is getting stronger and able to accept immunizations and heal him. We all are not promised any of our days but we certainly want to know that there will be many more to come, so we ask for big prayers that simon can heal his gi system without any bigger drugs and we can taper down these steroids. His muscle tone is weaker and it is noticeable, but he is running with the kids and his friends and trying to keep up. I'm probably the only one who is crying inside watching him work so hard to do what the other kids can do with ease. Still he amazes me and I am so proud and honored to be his mom. Thanks for keeping our family in your prayers. God Bless Tracy (check out a few photos of him and the girls - they are doing great and I can't believe thier first year of school is almost coming to an end. T-ball starts tomorrow (scrimmage) Go girls.) I promise to post new photos to this page, they are all on my carepage, and when I have time I will transfer some. They are cute
| April 07, 2008 at 03:33 PM EDT | |
| Just a quick note. We went to clinic today and decided to take him off the tpn and the iv steroids and switch that to oral. It will still be a huge dose and his immune system is pretty supressed, but at least the needle is out of his chest. We will go back next monday to check labs and make sure all his electrolytes are in order and things like that. I need to really try to infuse formula into his g-tube to get enough liquids and calories to make up for the tpn. Hes eating good due to the steroids and we hope to have a plan in about a week going forward to try and keep things at bay and be able to reduce the steroids while doing it. we'll see. In two weeks we are going to check immune function by giving him a few immunizations to see if he shows signs of reacting to them in his bloodstream. We'll see, it might be hard to judge with the steroids but if he shows signs of them that will be a good sign, if not its not unexpected but we are hoping to see something. So pray for that and for him to not have a reoccurrance of the diarrhea so that we can plan to move forward. My weekend was wonderful and I am very thankful to have had some time away and relax a bit. Thanks. God Bless Tracy and David | |
Just wanted to post something good for a change. Simon has improved some. We decided not to do the remicaid just yet and are praying that he will continue to show signs of improvment and we can start to taper some of the iv stuff we are doing to support him. He is full of energy and doesn't stop for one second from the time he wakes at 6:30 am until 8 pm at night. He will not take a nap. I contribute this to the high dose of steroids. This has also made him very mean at times. Not good when you are getting pinched and bit. Overall I feel things are better. The thing that is most interesting to me is that around this time, the 12 week marker, we started to see improvement as well. At that time we did give him remicaid last time. This time we are holding off, if for no other reason than to see if there is a pattern. I have asked the docs to try and come up with a plan that might lessen the degree of these episodes and slow it down a bit so that we do not have to see this kind of pain and length in diarrhea and vomitting. We will see what comes of it. Spring is upon us so hopefully that will be a time of complete renewal and some complete healing. Things have to start going all for the better.
I am taking a very much needed break from all of this for the weekend and heading out with some friends for a weekend of horseback riding and wine and not having to feed anyone at any specific time, while Dave takes on my role and attends the girls first t-ball practice. Pray that all continues to go well so that he may just have a good weekend with the kids while I try to regroup and come back rejuvinated for all. God Bless and thank you all for the prayers for Simon may you please continue to ask God to lift him up to healing. God Bless. Love Tracy
I am taking a very much needed break from all of this for the weekend and heading out with some friends for a weekend of horseback riding and wine and not having to feed anyone at any specific time, while Dave takes on my role and attends the girls first t-ball practice. Pray that all continues to go well so that he may just have a good weekend with the kids while I try to regroup and come back rejuvinated for all. God Bless and thank you all for the prayers for Simon may you please continue to ask God to lift him up to healing. God Bless. Love Tracy
Seems we are on another roller coaster ride with Simon. About 36 hours ago I would have said we were on our way to seeing some improvement but last night the vomitting started again. He actually had a solid stool late afternoon and then around 7pm he started throwing up and stooling at rapid rates. He continued at 11pm and slept but was changed a few times in the night and we are back to just liquid coming out of him. He is on just special formula today. One of the things is maybe his stomach is not emptying like it should so we are going to try erythromicin to see if we can move things along with the motility of the stomach. We are wondering also if this could possibly be something neurological causing him to vomit. He has had those psuedo tumors in his head before which made him throw up and I pray to God its not that. We are giving the antibiotic a few days before we look into scanning his head to make sure. He remains on iv nutrition and iv steroids that we are doing at home. I thought we were going to be able to get rid of them this week and start to taper the steroids but seems not now. Please pray for simon and for us to have the stamina and the strength to get through all of this and be in a better place very soon. Thanks and God Bless. Please check out a few new photos of our beautiful kids. Love Tracy
