Monday, July 13, 2009

A Beautiful Blessing Called the Ronald McDonald House

Every day, at least once, we would ask the nurses to have one doctor or another call us. We, literally, never got a call back from any of the doctors until we were about to go home a couple of weeks later. We only got to speak to a doctor when we would corner one. Funny thing is, when the doctors came through doing their rounds, we were told to leave and we still would not see or talk to them. I realize doctors are busy, but they really need to think about the person and the people behind the patient. We were lost. All we did was take turns going and sitting next to Eddie. Children are not allowed in the NICU and we have two girls who were in school. We really don't have any help from family. Well, we do have one aunt. Aunt Olga, who was an angel during the process and kept our girls entertained on the weekend. She is one of the most loving, nurturing and giving people I have ever encountered. She opened her home to us and never made us feel uncomfortable. She did it all. We stayed with her for the first couple of days until we got set up at the Ronald McDonald House. We live about an hour away from the hospital and this made things so much easier.

The Ronald McDonald House provides lunch and dinner and a little apartment for two adults and two children. This worked out for us perfectly. We were guests there during the holidays and had to run the kids to school from there only a few times. If you are ever asked to donate a dollar to the Ronald McDonald House, please do. We had never used anything like this. Never imagined we would have to. But it was truly a blessing. Everyone there is so welcoming, yet they leave you to yourself. If you miss the meal, it is packed nicely in the fridge for you to warm up. You have a security card to get in and out at any hour. Laundry is free. Food is free. There is a playground, computer access, tv room, kids playroom and a pool table. This place is an absolute heaven for families who need to be able to get to the hospital quickly and want to be near their sick child or children. I love the Ronald McDonald House and we plan to visit as a family one day to provide a meal for another family. You can visit the Ronald McDonald House - Austin website at

Wednesday, July 1, 2009

Doctors Can Not Agree on Brain Function

Eddie's EEG was basically flat. It showed almost no brain function. One nuerologist insisted that this indicated that he did not have brain activity due to the hypoxia he had suffered at birth. But the other doctors did not agree. Or, at first, one other doctor did not agree. A second doctor was called in and now two doctors felt that this did not necessarily indicate that Eddie had no brain activity. They thought there was a strong possibility that this was just due to his being heavily medicated with seizure medication.

We, at this time, had no idea there was a disagreement. We were told by the nurses that the doctors felt it was due to his medication and that he would be re-tested later, when his seizures were under better control. He had had a few more very slight seizures in the few days after his birth.

We had no idea about the disagreements the doctors were having.

We were also getting extremely frustrated by the lack of doctor communication. We would ask for doctors to call us or meet with us, and we never got any follow-through. Everything we were finding out was "unofficially" through the nurses. This had me so frustrated as this was my baby, not just one of their many patients. I wish doctors would understand this.