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We will not be defeated!!!

Today has been so frustrating!!!! So we have talked about if all goes well with his port sight and the packing we may get to go home tomorrow? Today they wanted to do a follow up CT scan of Bo’s chest and abdomen to compare to the one in June!?! He has been on 4 months of antibiotic therapy for his MAC, his Last bone marrow biopsy On Sept 26, so far is clear of the MAC, which is great means the meds are working! Today on the CT scan in his liver it showed the same a few granulomas but not inflamed, but his right lung has a few new nodules?!? What the heck!! What does this mean???? What this means is Thursday Bo has to have another lung biopsy. To say I’m disappointed is beyond how I feel. I’m trying to not let it feel like the entire wold is against us, I’m trying to believe that this is the best thing for Bo, I’m trying not to feel sorry for myself… But the reality is I’m sad,angry and disappointed. I miss my husband. Leksi, Johnny and Brookie. So does Bo, I’m pissed that my poor baby has to have this terrible procedure followed by a chest tube and 2 days in the PICU mostly sedated, I’m sad that he already has a gaping hole in his chest that is trying to heal! I WONT LET THIS DEFEAT US.. 2 steps forward 5 steps back, we are to close for me to lose my focus now! I know that it could be so much worse! I had to spend a good 20 min tonight by myself and pulled myself together, for my family for my son! I hate days like today, they suck! I know in my head it’s what needs to be done but in my heart I’m screaming NO for Bo’s sake! So this is what the plan is, it sucks big time, since they are “squeezing us in” Thursday he won’t have surgery until afternoon!!! Seriously after freaking noon?? Which means he will be NPO, nothing to eat or drink after 2 am! Yep 2 freaking am, how in the world am I supposed to tell my DIABETIC child that he can’t drink or eat!! He drinks more then most kids, it’s s side effect of his diabetes. This is one of the worst part for him when it comes to him having any procedure. It SUCKS! I feel so sorry for our nurse that day, because he isn’t a happy camper!! It will be around a 2 hour procedure, he will then be takin to the PICU to recover. Since he will have a chest tube( terribly painful, we hated the last one ugh) he will be mostly sedated the rest of the day and into the night Thursday. Tomorrow he will have his port repacked and hopefully it looks ok because if it doesn’t they will clean it good and pack it again in the OR Thursday! Clearly this is not what we wanted, we’re hoping and praying theses biopsies show the exact same thing as it did in June! Keep my sweet boy In your thoughts and prayers it’s going to be a long 2 days!


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November 6, 2013 - 10:17 am

Traci Pastine - Dear Carolyn, as a mother myself of two boys I would do just about anything for them. I grew up with your husband and I know if he could be there with you all he would. I admire you strength and efforts of you doing what you can for your little boy. Your family and supports are always there for you. Stay strong, and my family prays for you all every night. We are hoping that you and Bo will soon be able to put these memories behind you and move forward. You do have a strong little man. I believe he takes after his mom you are one strong lady. You are doing the right thing. I know at times it seems like everyone is against you but the truth is they are with you the whole time. Keep your head up, soon this will all be a memory that you and Bo will be able to talk about in the future. Spend all your time getting him better. Be strong for you Bo he needs you the most. I hope that your kiddos and husband will pay you a visit and help you stay strong.

Take care and sending all our love and prayers to you all.
Traci Pastine (Traci Butler)

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