One Week Home

It is hard for me to believe that today marks one week since Ashlyn was discharged from the hospital. Many have been calling and asking how she's been doing, so I know I am overdue for an update (not that I mind the phone calls). Ashlyn's follow-up visit to CHOP was changed from Friday to Monday because I unexpectedly encountered a bout of strep throat, but I am much better now that I am on the antibiotics. My sister Joanne and I took Ashlyn down to CHOP Monday morning, and we enjoyed some time in the cafeteria and gift shop before Joanne left for the train station to get to the airport for her flight back to Tennessee. Then Ashlyn had her echo, and EKG and a visit with the cardiologist. Things looked OK on the echo, which was just a quick check for any fluid around the heart or in the lungs. She also had the suture removed from where her chest tube was. After the appointment she had her chest x-ray and a blood test. It was a long day, and I didn't leave until 4 pm right after a Phillies game let out...so you can imagine the traffic. Ashlyn will stay on Lasix for a while and then it will be tapered off. Hopefully eventually she can discontinue the heart medications too. Dr. Goldmuntz will call next week and let me know if she want another x-ray.

Since being home Ashlyn has been having some sleep issues. She had a lot done while in her bed in the hospital, and it was probably traumatizing. She has been clingy and hasn' t been wanting to sleep in her bed and would wake up at night. The last two nights, however, have been much better, and last night was the first night she fell asleep in her bed. I'm hoping that with time she will learn that her own bed is a safe place where she will have undisturbed rest.

We've also been having some issues with diarrhea and poor appetite. I have had to add a tube feeding during her nap time. She does eat some but often needs to sit on my lap and be encouraged to eat. Our church has started bringing us meals, and last night I was excited to see Ashlyn readily sit in her booster seat and start eating the mashed potatoes that were brought! It's only been two weeks since surgery, so I am trusting that her appetite will improve as her body continues to heal. Thank you for your prayers during these days of recovery.