1-16-13 Ally hospital updates

1-16-13 Chicago Princess with her new panda bear

1-16-13 Ally up bright and early

3:40 pm — Have had a smooth day so far (knock on wood). Billy brought Ally’s meds from home that started this afternoon, great day nurse and respiratory therapist, home-hospital school session with Miss Melanie, and Ally is ALL ready for surgery. She should be going in ANY minute. Will take around 2 hours, but maybe longer if they run into anatomy complications again. Praying hard for Ally, the surgery team and even my sanity during the wait.

CPS Hospital instruction with Ms. Melanie and Ally

5:40 pm — Ally is out of surgery!!!! It went well and only took about an hour.  She will be waking up slowly and then starting her pamidronate bone infusions.  Thank you very, very much for all the prayers and well wishes!

11 pm — Ally is having a good evening.  She has been more alert and happy to watch her cartoons.  We are happy to have the same night nurse as yesterday and will be doing a bed-bath in a little while.  Baths are often done in the evenings in the hospital when it is less busy.  Ally has a ton of iodine from surgery all over her chest, arms, neck, even face that needs to be washed well.  Ally’s nighttime breathing treatment is done and went well with a great therapist that was new to her.  She is back on her home feeds which she is tolerating fine.  Her pamidronate infusion just finished and we will do labs in the morning to make sure she does not have any side effects (such as low potassium, like last time).  We will also check labs again in two weeks.  Ally was uncomfortable at first, but is doing very well with just tylenol and motrin.  Still VERY hopeful that we will go home on Thursday 🙂

Ally’s new port site is below the lower washcloth (old site is above the cloth)

Ally’s new port site is below the lower washcloth (old site is above the cloth)

Added later — Here are xray pics of Ally’s port to help understand more how it works to allow for easier needle pokes for infusions and blood draws.  You can also see from these pics how much her spine is curving.  In the semi-near future she will need a spinal rod surgery to help straighten her spine to help save her from some pain and other health complications. The pamidronate bone infusions should help to strengthen her bones for when this surgery occurs and to hopefully prevent future fractures in her whole body.

xray to show Ally’s new port (see bell shape to the lower right and then tubing that goes up and around), also shows how Ally’s spine is curving

xray to show Ally’s new port (see bell shape to the lower right and then tubing that goes up and around), also shows how Ally’s spine is curving