Another exhausting day. Pain team came and looked at Bodie and told me they didn't think his fits were withdrawal related, but were likely true fits of pain related to whatever GI issue is bothering him. Nonetheless, because he seemed to have some withdrawal symptoms, they increased his dosage of the Lortab. Good news is he only had 2 fits today, but he was also completely konked out for most of the day. They'll probably adjust it down tomorrow.
They really have NO idea what's going on with Bodie. They did an abdominal ultrasound, but it came back clear. After his last fit tonight, they did an ekg and drew blood to try to determine if something with his heart is causing the fits.
Meanwhile, the poor kid is exhausted and shows no interest in eating. This is BEYOND FRUSTRATING - Bodie is getting progressively worse by the day while they try to figure it out. It is heartbreaking and frightening.
PLEASE stop what you are doing today to pray for Bodie. He's is in bad shape and REALLY needs your prayers now!
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I petitioned God on your behalf. I pleaded. I prayed for a miracle for your sweet little guy. Praying for peace that passes understanding and healing, grace, and mercy for all of you. Know that there are so many out here sending up their prayers and loving you guys. We have a vested interest in your little man through our prayers and love...though we've never met him. My heart aches when things are not going well with little Bodie. I will continue to pray, esp. today, whenever you all come to mind.ReplyDelete
I feel the frustration and fear in your words. I feel your heart aching for your son. I have been where you are and can tell you that you are strong enough to endure this. God has chosen you because He trusts you with this challenge. And your trails will not be in vain.
At this point I will tell you it is okay to cry, it is okay to scream, it is okay to be angry, it is okay to fall apart. I found that when I felt my weakest, that was when others (meaning Everett's doctors and nurses) finally really, really started to listen and worked even harder to find the answers. Don't be afraid to tell them what you are feeling. Remember, they are taking care of you too! And they will use your emotions as motivation. Sometimes doctors can get short-sighted and only see the heart instead of the whole child and family around it.
Amy, I know every emotion you are feeling. I am always here for you. My number is (805) 441-4542. Call anytime. Sometimes I took greatest refuge in people who had been where I was.
I am praying constantly.