Sunday, May 10, 2015

Another crazy week

It has been an emotional week for Mark and I. Brocs body has never recovered from what landed him in the hospital at the end of April. His WBC and ANC continue to be low. Some of his other numbers are a little higher than they should be too. He has lost his olive complexion and become a pale little boy. He is trying really hard to do all the things he used to but having a hard time finding the energy to do them. We know that his heart is weaker too so that could contribute to him not having enough energy. The fact that he is sick is also putting a lot of strain on his weak heart, all the more reason for us to figure out what is making him so sick. He truly should look a lot sicker than what he really is with the blood counts that he has. He has not felt well for so long that his body is used to being sick and he can handle it fairly well. The big tell tale sign now is how his digestive system is failing him.

We have been on the phone all week with trying to get Drs to give us answers. Finally I was at my wits end and called a Drs office at Riley and begged them to help us. We have an app with this Dr on Wed afternoon. We are trying not to be negative but at the same time being realistic. Once again they could come up with nothing and we are again back to square one which would lead us on another journey. OR they could come up with some not very pleasing answers but non the less they will be answers and we can hopefully have our little Buddy feeling better again.

Because his body is fighting something he has very little energy left for his digestive system to work properly. He has already been on IV fluids at home due to him not tolerating his feeds properly. His gut is extremely slow at times which makes him have lots of pain and not feel so well.

I'm trying to vent him every couple of hours to help with the gas/air trapped inside his belly. Today was another bad day so he is on pedialite until we can speak with his GI in the morning. His GI has consulted with Cincy and he is waiting to hear back to see if there is anything they can do to help Brocs GI system.

Thank you for all your love,support and prayers. We can really use lots of prayers this week. Prayers that the Dr is willing to help us and listen and prayers for Mark and I to have a calm heart.



2 comments:

  1. Hi Kerrigan, I've been following your blog for awhile. Have Broc's doctors ever tested for HLH? Here is a link that explains the condition. Some of these symptoms sound like Broc. Just wanted to throw it out there. Take care.

    http://www.hopkinsmedicine.org/healthlibrary/conditions/hematology_and_blood_disorders/hemophagocytic_lymphohistiocystosis_134,212/

    ReplyDelete
    Replies
    1. Thank you so much. You are not the first person that has suggested this so it is one of the things his drs will look at. Thank you for your help.

      Delete