THE DAY 07/14/10

Rewind to July 13th at 5pm, Ashley and Gabrielle wake up from a nap and Gabrielle is running a fever of 102.8. We allow her to skip her dinner feeding, go ahead with her continuous night feeding. At 2:30am she wakes up attempting to throw-up so we turn off her night feed, vent her, and take her temperature again and it was still hoovering around the same. We decided to forgo the rest of her night feed and let her come finish the night with us in our bed. We had to get up around 6:30 so we could get ready for Gabrielle's monthly CF Clinic appointment. By this time her fever had reduced to 101.6 and she was acting like her normal self.

We were thankful that Gabrielle had her monthly CF Clinic appointment already scheduled for 8am on July 14th. This saved us the frustration of calling the clinic. By the time we arrived a the clinic Gabriellle's fever had reduced below 101.0. The Clinic did not seem concerned about her illness other than saying it was not related to her CF. Finally an illness not related to CF!!!

The clinic visit went great. Gabrielle's weight was up to the 67th percentile, length was up to the 61st percentile, and weight for length was up to the 77th percentile. This is the best stats she has ever had.

During the visit we talked about Gabrielle's MicKey button and it was decided it needed to be changed. Halfway through our clinic visit we left and went to the surgery office to get a new MicKey. The nurse decided we could increase the size and decrease the length. Gabrielle went from a 14Fr 2.0cm to a 16Fr 1.7cm MicKey button. While this was uncomfortable for Gabrielle it made Ashley and I happy since it will be easier to give her enzymes through her MicKey.

After the MicKey button was replaced we returned to the CF Clinic to finish our visit. It was decided the only change we would make this month would be an increase in her enzymes prior to her bolus feeds during the day. Gabrielle had blood drawn for her yearly blood work.

Ashley took Gabrielle home and I returned to work. Ashley and Gabrielle also stayed home from church that night. On my way home from church, around 7:30pm, Ashley called me because Gabrielle had thrown up her dinner feed and her fever had returned to 103.0. Ashley called the on-call pulmonary doctor and we were advised to head to the ER to rule out an urinary tract infection.

The ER Staff and VCH were wonderful. Once we told them Gabrielle had CF the kept us isolated from the General Population and moved us to a room as quickly as possible. By this time Gabrielle's fever had spiked up to 104.0. The ER doctor concurred with the pulmonary doctor that we needed to rule out a urinary tract infection. So the wait began for the orders to be entered and the nurses to come and catheterize Gabrielle to get a urine sample. After over an hours wait the nurses finally can to catheterize her only to find out that they could not. That meant we had to wait for Gabrielle to urinate on her own, which she had already done during the first hour long wait. The nurses attached a collection bag to Gabrielle around 10:15pm and the wait began. After about 30 min Ashely and I decided to start giving Gabrielle some pedialyte through her G-tube. We did this every 20-30 minutes until Gabrielle urinated. Gabrielle finally urinate around 11:15 pm. The test were run and showed no signs of a urinary tract infection. We were discharged and returned home around 1:00am.

What an exciting day!!!