Surgery #4: Remove Pacing Wire

Well, it has been a long time since I have updated my blog. Having a hard time finding the time or energy to keep up with it. Today was definitely a very important day in our lives and very blog worthy so I had to make the time. Lily went through her 4th surgery today and she isn't even 2 years old yet! I know this may seem like nothing to some but with Lily she constantly keeps us on our toes around here. Let me back up a bit...I'm sure that many of you remember me continually complaining about Lily's mic-key buttons failing with the balloons popping. Well, that has not changed over the past few months. They continued to fail at a rate of approximately 1 to 2 weeks for the duration of 10 months. It has been nothing but a mystery to the docs at the clinic but a complete frustration for us and many phone calls to Kimberly Clark the manufacturer, but alas we think we found the culprit 2 weeks ago.

It was a Monday morning and I was going about my usual routine and went in to get Lily up for the day. I found her mic-key button out of her belly with no idea of when it came out. What was even worse was that I was unsuccessful at putting in a new one. So off we went down to the clinic to have the nurses give it a try. Cha-ching! They got it in but the GI doc wanted us to take Lily down to x-ray to have them check placement. Several hours later we were able to get in and have x-rays done. Everything looked great so the radiologist told us we could go ahead and feed Lily so we did. Later that evening I received a phone call from the GI doc stating that the feeding tube was fine but that they had found something else and that she needed to talk to me. By this time it was too late to contact her so I had to settle for worrying about what they found all night until I was able to talk to her the next morning.

The next morning I spoke with the GI doc and she informed me that Lily had a piece of a pacing wire embedded in her intestine. Say what? She explained to me that it had to do with her open heart surgeries and that they sometimes put pacing wires in place in case the heart gets an irregular rhythm and they need to use a pace maker. Well, in Lily's case they didn't need a pace maker so they eventually removed them and when they did they either pulled them or cut them off. Not sure what exactly happened in Lily's case but either way this wire was in her body and the GI doc felt that this was the reason why the balloons kept popping on her mic-key buttons. Makes sense right? Not to the surgeon and the cardiologist. They felt it was too far away from the balloon to be the culprit, but after talking with the GI doc and me calling and doing a lot of complaining they decided that this surgery was back on and that that wire needed to come out.

We arrived at the Cleveland Clinic at approximately 9:45am this morning and checked in a the J1 desk for admissions. We had to report to G51 where the PICU had been moved recently so they can remodel the old one. SWEET! Anyways, we immediately saw a very familiar face of our favorite nurse Ellen when we arrived and that made me feel so much better. We also were joined by Pastor Tom from our church and my good friend Kathie. Gotta love the support! The waiting around took the longest but eventually they took Lily back for her surgery. Lily was her same friendly, spunky self while waiting in her room. She was waving, squalling, and yelling out "Bye Gamma" and "Bye Gampa" to people coming and going! Those are her buzz words lately! She also did lots of sitting up and clapping for everyone! All the nurses and staff were just commenting on how great she looked and how cute she was.

Long story, short, the surgeon Dr. Stuart explained that he would be making an incision at the base of Lily's incision from her heart surgeries and using x-ray to help guide him to the location of the wire and remove it. He seemed very confident that he would be able to get it all. When he arrived at the waiting room over an hour later he brought me the wire in a container! This thing was 2 1/2 to 3 inches long, no doubt! I was amazed and I think he was too! He had a little bit of difficulty getting it out because it was deeper into her tissue than he had anticipated so he had to make her incision a little bigger. However, he got that stinkin' thing out and praise the Lord I am very hopeful that we will not be experiencing any further problems with the mic-key buttons. That said...

Lily was able to leave the hospital around 3:30 and came right home. She was a bit cranky this evening which is understandable since the incision is a little deeper than what was planned. All in all she is such a trooper! She did great! She is such a wonderful little girl and we love her SO much! I don't know what I would do without her! I can only thank God for his goodness in my life. I can only praise him for keeping me sane and helping me to raise this beautiful little girl he has given me. I am so thankful and I am so grateful! She is asleep and resting comfortably in her crib! God Bless you little Lily! We love you so much!