March 2011

Well Brookie came in contact with some bug during her hospitalization in February for the tummy bug that resulted in numerous seizures. I took her to the doctor for what began as cough, runny nose, and a fever. After a week of being on antibiotics that her body has built up a tolerance to, she was doing much worse. This resulted in us taking her to the ER after her vomiting her medications for her heart, low blood calcium, and seizures. We have learned that if she is ill and misses a dose of her seizure meds then she will in most cases have break through seizures. We stayed over 24 hours in the ER observation running flu, RSV, and other bad respiratory viral screenings, and having a chest x-ray that all told us nothing. She could not maintain a safe oxygen level and was only able to keep herself around 70% on room air. The doctors put her on a liter of oxygen to help her breathe better. We were admitted to the hospital and they did nothing but keep her on oxygen for the next 3 days, every time they tried to wean her down she was working very hard to breathe and was only maintaining a oxygen level in mid to high 80's. The pulmonoligist ordered for another x-ray to determine if she possibly had pneumonia or bronchitis that was causing her to have breathing difficulties. The next day we found out that this was a POSSIBLE case of pneumonia but they were not certain. They started her on another round of stronger antibiotics and finally got her down to 1/2 a liter of O2, so that we were able to leave the hospital on day 5 to go home and be with my other 2 children. Brookie has been out of the hospital almost 2 weeks and is still requiring the oxygen due to our higher elevation in the mountains. I have tried to wean her down and we have had several times where she now has blue spells. We now are going to have a profusion scan because her cardiologist says there is a possibility that her heart may not be pumping equal amounts of blood to each lung. Also we are having a VPI test to determine if there is still an issue with her having a micro aspiration whenever she drinks by mouth due to an abnormality of her pharygeal flap not closing and liquids coming out of her nose on some occasions & her breathing them into her lungs.