More Loops

Griffin’s doing well now. He currently weighs 9lb 10oz. He’s over the respiratory stuff for the most part (thank the Lord!). Dr Pelinka got word from Dr Goins and I’ll try and make this as least complicated as I can:

When being discharged from the NICU, Dr Goins stated he was going to send his MRI to University of California to be read by a neuro-radiologist down there. Since then we haven’t heard anything. Dr Pelinka emailed him to see if we needed to increase his medication and to inquire about the MRI. Apparently, California had a different opinion on Fin’s MRI. They labeled a diagnosis of periventricular leukomalacia. A diagnosis like that usually means a prolonged period of no oxygen in a really premature baby, which hasn’t ever been the case for Griffin. That differs from what Dr Goins believes his MRI says … which differs from what OHSU said they think his MRI looks like. So, we now have THREE different opinons from 3 doctors.

Dr Pelinka admits that she isn’t real clear on what exactly Dr Goins’ diagnosis is, nor is she clear on the diagnosis given by the University of California. She is going to consult with Dr Goins next week to get a clearer picture as to his insights and Californias’ (as Dr Goins talked with California).

I increased his medication last night I have to express how terribly hard this is for me. I know that this medication is protecting his brain from any further seizures. Dr Goins is so passionate on keeping him on this so long because he has seen cases where kids who have an illness/seizures like this at a young age, when not treated in an aggressive manner, can develop a very dangerous form of epilepsy later in life – so dangerous that medications don’t help. I hate when we have to increase his meds because just when he’s getting used to his dose, interacting, moving, staying up longer, reactive … then we have to increase his dose and he goes back to being really sleepy. I feel almost neglectful in a way to be giving it – to see what it does to him.

I need continued thoughts and strength. I can’t he lp but feel that I’ve been cheated. Cheated in my time with my newborn – time that was stolen by worry, exhaustion, stress, frustration, fear, sadness. Don’t get me wrong. I love my son – and so thankful for now he’s healthy. Right now we’re in protection-mode with his meds but at the same time I want MY SON (med-free) back. I want to feel like I did the 6 days I had him home prior to getting sick. I feel like forever I will be worried at every illness, every quiet moment, every learning snag .. wondering if “THIS” was caused by his illness. I should be feeling fortunate that this is “all” that’s wrong with him.

On top of this all, my doctor call and I have strep throat. And I thought it was life catching up to me making me so exhausted.