A Short Night and a Long Day

September 29, 2012

Last night we prepared as best we could for Julia’s surgery today. Keeping things as normal as possible, Julia came home from school and we reviewed her day and any homework she had to complete. Julia told us that she took both her math and spelling tests a day earlier, so she wouldn’t get behind while she was out because of her surgery. She was so proud to tell us that she got 100 on both tests and “I didn’t even study”! She had a special visit from her friend, Jake, and then went to the market with Daddy to make sure we had some meals for Pop Pop.

After dinner, it was time for a shower, packing our bags including plenty of DVDs to watch and activity books to keep Julia occupied. We had to remove the nail polish from this weekend’s mani-pedi so Julia said we will need to arrange for a “Spa Scouts” meeting at the house when she gets home. Julia wanted to watch a movie since she didn’t need to go to bed at her normal school night time, but she got tired and decided she wanted to go to sleep.

Julia and I lay together for some time, holding her in my arms and gently rubbing her forehead with my fingertips. “Mommy, I’m scared”. “Me too, Julia, but we will get through this together. You have lots of love around you to protect you.” “I know Mommy, I can feel it.” After a few yawns, and bringing Kevin (her favorite “stuffed” friend) close to her chest, Julia fell asleep. Not wanting to leave, I held on to Julia for the next hour, watching my strong, brave girl sleeping peacefully. Needing to finish preparing for the stay at the hospital, I finally had to leave.

Knowing we needed to wake at 4 AM, we headed to bed early, tossing and turning, worrying about what the next day would bring. Julia must have sensed our anxiousness and soon stood at our door. “Can I lay with you?” Climbing in between us, giving us comfort in holding her close, we all slept. The hours moved too quickly – I didn’t want to see the morning come, hoping for the clock to slow down, knowing that I would not be able to hold Julia this close for a few days as she heals.

We arrived at CHOP at 6 AM and were quickly checked in and brought to the pre-op room. After a few visits by anesthesia and a once over (or maybe twice over) by the nurse, Julia was prepped for surgery. Dr. Mattei came in to discuss the surgery with us. He said that he had reviewed the CT-scan and decided to change the approach of the surgery. Dr. Mattei felt it would be best to complete the smaller surgery first. This could be completed thorascopically. The second tumor in the left lung is much deeper and there was concern if this surgery was completed first, that Julia would not be able to lie on her left side to complete the next procedure. Dr. Mattei said to expect the surgery to last 3-4 hours.

Julia drank the “giggle juice” to relax her before they wheeled her back to OR at 7:30 AM. The prep in the OR would be about one hour and we went to sit in the family waiting area. The nursing staff kept us informed throughout the morning, telling us that surgery started around 8:45 AM and letting us know as things progressed through the morning. It seemed like an eternity between the updates.

We were surprised to see Dr. Mattei come into the waiting area around 10:45 AM. Surgery was over and they were able to complete both procedures. The first tumor was clearly seen and came out easily with no need for a chest tube. The second surgery was more involved, the tumor sitting deeper in the lung, and requiring a chest tube. Dr. Mattei said the tumor was “softer” and it was not as easily defined. He removed the area around the tumor (a wedge or Julia’s lung) to try to ensure he got it all (the upcoming radiation will make sure everything is killed off). Dr. Mattei was very pleased with how the surgery went and said that Julia came through it beautifully.

About one-half hour later, we were able to go back to the recovery room to see Julia. She was sleeping and when she woke, complained about her throat. She was thirsty and didn’t understand why she couldn’t have anything to drink. The nurses worked on getting Julia’s pain under control and she was given a pain pump that she could use as needed. When she was stable, Julia was moved to a regular room (doing so well that she did not need to go to ICU!).

Throughout the afternoon and evening, Julia has slept on and off, sucking on ice chips, sipping some water and then eating some crackers. She has been using the pump as needed, but as the evening progressed Julia became more uncomfortable. About an hour ago, Julia’s nurse brought her some oral pain meds to help her rest more comfortably. It has been a long day and tonight I am hoping to move the clock a bit faster, hoping to get past this pain and see my baby smile again.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468