A Little Progress Goes a Long Way
Okay sorry for my delay on the updates I've been way too exhausted to think. Friday I went to clinic and Simon received a big dose of steroids to try and calm down his imflammation in his colon. This of course was not how I wanted the diarrhea to end but it has seemed to help. The steroids have made him very very moody and irritable and he is not managing his anger too well, which for Simon is extremely unusual. Its hard to see him like this as he is such a happy kid. Just another side affect we have to deal with. Along with that he received pentamadine and started pulmicort meds via his g-tube twice a day to maintain the inflammation and hopefully keep it at bay so the diarrhea goes away and he can eat and drink and feel good again. As I said the stooling is cut in half at this point and this morning I woke up to a pasty diaper instead of liquid so that was good. We will have to see how it goes. He receives 4 more days of steroids, todays dose is the last heavy one and then we cut it in half tomorrow. I can't wait to get rid of it as its a big immune suppressant and does have affects on his organs and blood counts. His hemoglobin has been going down slowly and I pray that rebounds as well. He has not received blood products for a year probably. He is still on the TPN and every morning he wakes up puffy and throws up. Not sure if he just can't handle it or if its the saline to flush the tube or what. It takes him all morning to recover from it and we have even increased the infusion time to 13 hours. I pray and ask you to do the same that once the steroids stop and we continue the pulmicort he can be maintained and come to normal with his stools and eat and drink well so we can get off the tpn and maybe not need as many feeds. I"m trying to think this could have been another blessing to maybe turn around his oral intake and push us forward in another direction so we may continue to heal. Today marks day 300 post transplant number two. Its hard to believe and you all know it has not been an easy road but with all of your prayers we are making it. Simon and I both have chest colds which is not good so pray that passes very soon without further incidence. I have to return to clinic on Tuesday and I pray the labs look good and we are on the road to stability and healing, for good. Thanks for checking in and for being there for us. All the posts felt really good to read. We managed to have some fun and attend our oaktoberfest on friday with friends and the kids including simon ran around dancing in the streets. It was very cute and brought tears to my eyes. Simon just wants to be a kid. Yesterday was resting and today the girls are dragging me to toys r us to spend a gift card (thanks uncle mike) that has been burning a hole in their pockets. So thats it here. I'm still recovering from sleep but dave was on last night and will do it again tonight and this time I think I'll sleep in the other room so I don't get up everytime he does. God Bless you All. Love up your family today. Tracy
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