White Family Adventures: It is good to be home!

The first week home from the hospital has been hectic and exhausting.

Care for Cyndey is around the clock. With feeds every two hours, diaper changes, administering medications on time and being aware of when she is about to get sick and having the bucket and suction ready. Keeping her entertained with books, movies, games, toys or going outside helps keep her from getting bored. Nathan and Lily also do their best to entertain her with their silly antics.

The days are filled with 2-3 hours of therapy sessions, daily errands or doctors appointments. The days seem to go by so fast, by the end of the day everyone is worn out.

Soaking up the warm sun! It feels good to be home.

Checking out her bedroom

Watcing football and enjoying being outside.

Friday we had dealt with more throwing up than we had on a while. Thinking she was having reaction to her flu shot we kept a close eye on her. Saturday morning, Cyndey woke up with a 99.5 temperature and acting pretty lethargic. Per her discharge papers we were to take her on for a fever of 100.4. Saturday around 3pm the fever reached 100.5. Off to the ER we went.

We were at Tucson Medical Center from 4pm to 1am before being transported to Phoenix. Along with a urine culture and blood work done the doctor felt an MRI would be beneficial to ensure shunt was working properly. She saw what she called a herniation on the right side and felt Cydney would be better if seen by more specialized doctors. Her scans were sent to a neurosurgeon at Phoenix Children's who agreed Cydney would be best served with a pediatric neurosurgeon. We then sat and waited for ambulance transport to be available.

Once to Phoenix we sat in the ER for another several hours while doctors came in to examine her.

A neurosurgeon came in to reset the shunt, something that has to be done after any MRI is done. He set the setting to 1.0, previous setting was .5, to slow down the amount of fluid being drained. He felt there was too much drainage.

All day Sunday she was very alert, her eyes were open wide and symmetric. She was responsive to our questions and commands. She was kept on an antibiotic and fluids as she was having trouble keeping her feeds down and she remained to have a low grade fever.

Monday morning the doctors confirmed A UTI. Her Neurosurgeon came by to discuss the scans and did not see anything of concern. We told them We wanted to go home, seeing as the scans looked good and we had antibiotics for her. Knowing we would be back Thursday for post radiation scans and pre chemo testing, having her back home for a couple days would be nice. All doctors agreed and discharge paperwork was started. After a kidney ultrasound as a follow up to one she had a month ago, and one more IV dose of her antibiotic we were discharged and on the road home by 430pm.

Being home all together is great! Back to a busy schedule of daily therapies, doctors appointments, and tending to her daily needs.