Another Surgery

I thought we were done with surgery, but it looks like Ashlyn has to have another surgical procedure...only minor. She had a hearing test done last month, and it showed that she is not hearing to full capacity. After a visit with the ear, nose & throat doctor, I learned that Ashlyn has a thick fluid in her ears that has been sitting in there for a while, and it won't drain out until ear tubes are placed. In addition she has enlarged adenoids (probably the cause of the fluid), and she will most likely have to have them taken out. The surgery is set for April 11 down at CHOP. I'm hoping after her recovery is complete that we will see a big change in her development and hopefully sleep as well.

"Cheese" on Christmas Eve

A New Season

It's been 2 1/2 months since surgery. Ashlyn is fully recovered, and we are going into a new season of our lives. Just tonight I was saying to Eric that I can't believe we went through three heart surgeries and how thankful I am that we don't have to think of anymore ahead. Ashlyn turned 3 last month, and she loves being 3! She was able to get through the entire recovery period without getting sick. This week though she did weather some fevers, but she is well now, and her appetite really has been the best it's ever been. Her sleeping is a little better, but we still have some nights that she wakes up one time. She gets her Mommy all to herself while her big brother is in Kindergarten all day. However, she does have a lot of time during the week in therapy. She has all new therapists now that she's three...speech, OT, PT and a special teacher. Although she is developmentally behind in these areas, she really is making progress every week, and hopefully now that her heart is fixed she can catch up. We are getting used to her new routine.

Ashlyn had her yearly visit with the endocrinologist last month. She does not need any growth hormones right now because her growth is actually quite good, and she is in the 75th percentile compared to other girls with TS. We also went down to CHOP this past Friday for her echo and cardiology visit. She will still need her heart medications for now, but she is off of Lasix, and there has been no fluid build up, and she is now clear of any post-op complications. I think her doctor really expected there to be more complications and attributes it to her being lucky, but I know that all of the prayers sent her way had more to do with it than luck. Her pulse ox in the office was 84%, but today at home while asleep we got a reading of 90%. At this point Ashlyn will only need to see cardiology every six months. Later this month she will visit the Feeding Team, who will evaluate her growth and manage her tube feedings.

A Little Scare

Ashlyn has been doing really well at home these last weeks of recovery. Her appetite has improved some, and she is just as playful as ever. We are still having some issues with going to sleep and some separation anxiety from her traumatizing experiences in the hospital, and there are some issues that I think are just related to being almost 3. Last night before going to bed I noticed her incision looked a little puffy, and there was redness around it. I took her to our local hospital ER, and there were no signs of any infection...no fever, drainage or pus pockets...just inflammation. I called down to CHOP and was advised to bring her in the next day if there was no improvement the next morning. Thankfully this morning the incision looked much better, and throughout the day it has improved more and more. It must of gotten irritated from playing ball or being on the slide that day. It was a reminder that even though she thinks she is perfectly fine, she still has some healing left to go!

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.

Day 6: Home

Ashlyn's x-ray this morning showed that she is responding to the oral Lasix, and she was given the "All Clear" to be discharged. She is now very happy at home playing with her familiar toys. Even though she is home now, there is still recovery that needs to continue. She will need a followup on Friday to repeat the chest x-ray and echo and to make sure the incision is healing and remove a stitch from her chest tube. She will continue to be on Lasix for a few weeks and may still needs some pain meds. It will take 2-4 weeks for the incision to heal and 6-8 weeks for the sternum to completely heal, so there are precautions during that time. Being at home will help her get the much needed rest she has been missing because she really did not sleep well at all in the hospital (and much needed rest for us too).

It really is a wonderful feeling having our little girl back the way she was before the surgery only with a completed heart repair. It's hard to believe she has gone through three of these surgeries but wonderful knowing she won't have any more. She is a little walking reminder of God's faithfulness, and God has wrapped His arms around us through our family, friends and church family. We are very blessed. Thank you!