Day of Life #255

Yesterday was a busy day, the decision was made to admit Madeline for observation and find out exactly why she isn't 'thriving'. We spent a lot of time on the phone with doctors, nurses, and the insurance company. The last contact we had with the nurse from GI, was to head down to main campus for admission, as luck would have it, we got there and the reservation wasn't in the system (go figure!). A call was placed to the kidney doctor and she was like 'what are you doing there?', I guess there was a minor (major) miscommunication somewhere and somebody forgot to call the clients. Around 9pm we ended back at home for the night. I guess I forgot to mention Rachael's truck developed a fuel pickup issue the last few days and it started getting really bad to the point we were having trouble starting it, so we had to run it over to the Firestone on Center Ridge in Rocky River (those guys are great btw).

Today started up just as hectic, phones ringing with insurance and doctor offices again, getting Maddie's formula ready, packing last minute parishables, making a meal for us, Firestone called, they found a pinhole leak in the fuel line and instead of patching it, they replaced the entire line, free of charge might I add. (Thanks everyone at Firestone Rocky River). Madeline finally got into the clinic around noon, soon after the rotation of nurses, assistants, therapists, social workers, and doctors began coming around collecting the usual information and giving us an idea of the plan.

The doctor, who happens to be the wife of one of our favorite doctors from the NICU, gave us a much better picture. For starters, she is not sufferring additional brain damage as we interpreted the news from nephrology the other day, but what is happening is that when her head doesn't grow, her brain isn't growing, and the first 1-2 years of life is where the most growth and development occurs, and thus it is still very concerning. SO! The plan is for right now to observe us, stick to our normal routine and find out what if anything needs to be changed. There are two possible reasons that she isn't growing, one being lack of nutrition, the other 'organic' such as some sort of disease or condition that affects growth. The plan is to figure out which one or possibly combination of the two that it is (if they can).

The place we are in now is a rehabilitiation hospital, so it is realatively small, there is only 1 ward, the doctors here don't do clinics while they are on roation here, and there are plenty of PT and OT to constantly work with her. The room is much bigger, however rules here are only one of us can stay at night.

That's about all for now, we'll update tomorrow when we have anything more.