We left at 4 am. We left hopeful, not happy persay but hopeful. We got there with time to spare. Our first stop was radiology to get Katie's kidneys ultrasounded. She was happy, Katie had gotten nearly a regular nights' sleep by falling back asleep in the car when we left the house. She smiled at the nurses and at us. We saw why we named her Joy. She is pure joy, that is her name. Then we went to Urology. She was weighed and for the first time in weeks got to spend A LoT of time out of her Pavlik harness. She smiled the whole way through her urodynamics test. She even took a nap! Meeting with Dr. King afterwards (THANKFULLY we got to see her early) we found out some of the hardest news since she was born (at least for me, something I have been dreading hearing from the get go). We have to start cathing Katie every 4 hours during waking hours. We have to log how much we get for an entire week and by the end of the week we call Riley to talk about the results. If we get less than 30 ccs reguarly we can stop (PLEASE pray this happens).
My energy level was nearly kipput by the end of all that. We had lunch got to our spot to wait. Our appointment was at 1, we were told we needed be there at 12:30 and it wasnt until after 2 that we saw our first dr. We had the develpmental ped come in, nice man but didn't say anything new. A neurologist nurse come in who didn't say anything new (we like our neurologist here in South Bend and he's way more accesible and helpful than Riley). We saw a SBA person who said she was "working" on a support group for Northern Indiana, clearly not very quickly. We saw the social worker who gave us information for discounts at local hotels and the medicaid waiver than can help adapt our home later if we need it. We saw a PT who agreed with our PT about her ankle, very tight. And then we saw the rehab dr. who attempted to play orthopedist/pt. I am not a fan of the rehab dr. I never know what she really does and she doesn't seem that impressive for being a main dr. of a Spina Bifida clinic in Indianapolis. We didn't get to check out until 4ish.
The string of doctors seemed pointless because from the start at around 2 we were told we might not see the ortho. I canceled our appointment for next week so we could see him yesterday instead of driving there twice. My little girl is stuck in a harness and wants to move. She needs to develop rolling over and wants to! We need her feet and ankles looked at and dealt with. all of this is the orthopedist! I was furious. I let every doctor know I was disappointed and every one of them let me know there was nothing they could do he was stuck in a trauma surgery. While I get that, why wasn't I told earlier, why don't they have a back up for this kind of situation, why can't they work with another hospital. Why is there only 2 men in the entire hospital that can see my girl and both are dealing with something else!? The last doctor I told her I was going to try St. Vincent because their ortho travels to South Bend. (Riley hates St. Vincent) Boy did that get the ball rolling. She says, "Well, Ms. Blye. I can't produce doctors out of the OR." Sure I get that, but I wanted SOMETHING. I was not about to travel 3 hours for them to tell me the single person I desparately wanted to talk to was not there. I demanded (in a semi nice way) an ultrasound be done of her hips because I do not want anymore miscommunication. She informed me that she wanted the ortho to see her right away for her ankles and would set up an appointment asap. I compromised and accepted something for this week.
I have to go back to Riley Thursday for the ortho.
I am exhausted, raw and my heart is broken. Nothing went well. My sweet Katie Joy is going through so much and her smiles tell me we can do this, together, as a family, we can do this. It's not without tears and breaking down. It's not without hardships, but we can.
As we all fell into bed and drifted off to sleep. I remembered and thanked God for my husband. My sweet, easy going husband who is rock through everything. Thank you Jeff.
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