Anyway we tried to keep them apart as much as we could. I bought an extra thermometer and wrote the boys names on them. We had everything separated for them. They didn't like the fact that they couldn't play together or sit close to each other. Life was really scary for Mark with temps over 103 for a week straight. He gave us quite a scare a few times with how he was acting. Dr M was great at re-assuring us that he will be fine it will just take time.
During this time Broc was having labs ever 3 days at the hospital. Last Monday his eos levels were trending higher but we (Dr H, Dr M and Me) decided that we would see where his numbers would go as we want to keep him off steroids as long as we can before he has to go back on them for his next surgery. Broc continued to have fevers still. He has not had a fever free day since his surgery on Dec 4. Well his labs were not good yesterday. His eos count is almost double what it was on Monday which means he need steroids again. We are only doing 2 days of steroids to see if that will bring it back down again. We are also checking his Hgb levels. Dr Eliason would like them to be at 12 or above before surgery in case we were to run into any problems. The problem is we cannot give Broc EPO shots at the same time as his steroids. Steroids do not come without side effects either.
Right now its all a balancing act and we are trying to find a happy medium for Brocs body.Thank goodness Lil Mark is back to his old self again. He is still having times were he gets tired but that is part of EDS too so its a little hard to know where the tiredness comes from. He has caught up on all his homework that he missed. He missed the whole last week of school. Thank you too to all his classmates who made such loving get well cards for him. It was very sweet of them. Thank you too to all Brocs classmates who made get well and miss you cards for him too. He loves reading all the cards from you all.
Broc also had another IV treatment on Monday. Things went so smoothly. The PICC line makes things so much easier. All we have to do is hook him up. No pokes, no crying,no holding our Buddy down. We love it!!!
He did get a little nausea from his treatment this time so we have a little meds and he went to sleep. Mark does such a great job at helping his brother. It was his first time being at home while Buddy was having his treatment. He helped the nurse gather all the supplies and made sure Broc always had a drink in his cup. Mark also helps me flush Brocs lines twice a day. He knows what supplies to get and gets them all ready for me. We are trying to have him as involved as we can so that he feels important too. Although this is all about Broc we want Mark to feel he is included as much as possible too.
We thank you for all your continued love,prayers and support. The next week and a half will be very busy as we get ready for our next journey. If you would like to come and visit us before Brocs surgery please call before hand and make sure you are well. If he gets ill before surgery it could cause his surgery to be cancelled.
We will be looking for some helpers during the week of Jan 12-23 to put Mark on the bus in the mornings and possibly after school, so please let us know if you are available to help.
No comments:
Post a Comment