I had every intention of posting each night while in the hospital, but of course that didn't happen! Good thing our stay was only 4 days, should make it easy to catch up in one post.
Surgery was scheduled for Tuesday July 31st at 9am, we needed to arrive at 7:30am to get all ready. We had to spend most of the day Monday at the hospital doing pre-surgery visits, xrays and labs. We also attended a pre-surgery class for Jillian. She was able to learn about what would happen during her stay and see some of the things that would be used in the operating room like the o2 mask, IV, gown, hat and mask. She also got to smell and choose a sent for the "special air" she would breath to go to sleep. Most kids would have picked bubble gum, watermelon, grape etc...Jillian chose banana! She also met a child life specialist named Morgan that would be there the next day and said she would go with Jillian into the operating room and stay with her until she was asleep, which made Jillian and me feel a little better! The class was really good for her, I am glad we went.
On Tuesday morning we arrived at the hospital at 7:30 am where we checked in, had our pre-op exam and met with Dr Burch the surgeon. He is from the south and has a accent that makes listening to him really comforting! He explained exactly what he planned to do and why. He told us he wanted to put in a 23mm porcine (pig) valve, which would be big enough to last 5-8 years as she grows. He also would place a conduit that would allow them to do the next replacement via catheter. This procedure is fairly new, 2 years or so. The great thing about this is it is done in the Cath Lab, and is only a overnight stay (not open heart). He then proceeded to go over all the possible complications, that of course wasn't very fun to listen to, but what choice do you have? After he was finished we met Dr. Pribble, the anesthesiologist. He was more than ready to get started, so we chatted with him as we walked down the hall to the dreaded doors of the operating room. This is the place where you say "see you later", hand over your child and turn and walk away:( This was the part I was DREADING, even though they gave Jillian some versed to relax her she was not going to go willingly! They told us in the class that we shouldn't say "goodbye" instead to say "see you later" they said kids associated goodbye to leaving, but see you later means you will be back soon. Leaving her crying "don't leave me" was the hardest thing I have ever had to do! We handed her over, waved and said "see you later" all the while fighting back tears (don't let them see you cry is another thing they ask you to do-haha) As soon as we turned to leave Jason and I were both in tears.
We went and checked into the waiting room, they said the operating room would call about every hour or so with updates, gave us a pager just in case we weren't there when they called. The surgeon said the whole procedure would take about 5 hours, give or take depending on the amount of scar tissue from her previous surgery. We didn't stay long in the waiting room, for one it was packed and for another most of the families there were having rather simple same day procedures such as tonsils, ear tubes or circumcisions and it was difficult to hear them call parents saying their child was finished after only being there for maybe 1/2 hour.
We headed down to the cafeteria where we met my parents and later Jason's parents. The day dragged on, we received our first update that the anesthesia had placed all of her IV's and lines, and surgery had just began. We waited another two hours before we got another update, there was quite a bit of scar tissue and at this point they were just getting ready to put her on bypass. Around 2:30pm Dr Burch came out to tell us he was done and how things went. He told us everything went well, he had to place a slightly smaller valve, 21mm due to a extra coronary artery that he found laying right up against the pulmonary artery and twisting around her aorta. Extra arteries are pretty common is CHD kids, just because their heart anatomy is so 'messed' up! He tried to see where the artery went and what it was feeding, but couldn't and didn't want to mess with it and cause complications, so we will have a CT scan at a later time to look into that:) He said anesthesiology would have her ready in the CICU in a half hour or so and at that time we could see her.
So, we waited another long 30min, Last time I was too nervous to eat and when I walked into the ICU and saw my poor baby so swollen with so many tubes I almost passed out and the nurse had to catch me from falling to the floor. I learned my lesson and brought a Cliff bar this time which I ate! When we got to the CICU I was expected her to look like she did last time, but I was pleasantly surprised she was extubated and they had all the chest tubes and other lines covered with her gown. She looked really good! She was pretty out of it for the rest of the day. Grandma and Grandpa Brunson and Simon were able to see her for a bit before going home, I am not sure if she even knew any of us where there! We hung out in the CICU for the rest of the night, Jillian was in and out of it most of the night. I went to bed in the parent sleep room around 11pm and Jason stayed in the chair at her bedside and at 3am we switched places. It was a long night but uneventful! Fun thing, our neighbor Cory is a NP in the PICU/CICU and he happened to be working that day, so he was able to take care of Jillian until he left at midnight, so that was fun.
The next morning they weaned the rest of her major IV meds, and oxygen, took out her three (very large and painful) chest drainage tubes, and Arterial line (IV that goes into an artery). After all of that was done she was given the OK to move to the CSU (cardiac surgical unit) we were upstairs in our recovery room by 2pm:) The rest of the day we spent resting and trying to get out of bed to stand and walk to the potty. Grandma, Wes, Jacob and Claire came to visit, Jillian was still on morphine so she was quiet and pretty much ignored them. Later that evening we went on a wagon ride, watched the Olympics and went to bed. We all slept much better that night.
We were woken up at 4:30am by the lab tech needing to draw blood, this didn't go over well with Jillian and we had to send her away:0 Instead we went down to xray for pictures of her heart and lungs, when we got back to our room they were ready and waiting to do the blood draw. Jillian of course freaked out,(who can blame her, I wouldn't want to be woke up out of a deep sleep to a lady wanting to poke me!) so we finally just had to hold her down. It was quick and the tears didn't last as long as the silent treatment she gave me:) The rest of the day was spent getting out of bed for walks, eating, drinking and visiting with our friends and family. We had visits from Aunt Jen, Aunt Tamara, Aunt Melissa, Grandma Simon, Chrissy, Jacob and Claire all of whom brought fun presents and much needed treats for us:) We also got a visited from a few of our heart friends-Brytten, Cindy and Stephanie came up on Wednesday night, and Ali Holder and her husband brought us a cute stuffed puppy. It was a good day, especially when they mentioned home for the next day.
We woke up on Friday morning and before we knew it we were out of there, stopped at Grandma's to pick up Jacob and home by 11:30am:) On Thursday night Claire had come down with a fever so we had to leave her at grandma's since we can't let Jillian get sick. We are going to see how she feels tomorrow and probably take her to the doctor to make sure it isn't strep or ear infection. I wish I could be there to take care of her, I don't like not being there when she needs me but I need to be here to make sure Jillian is doing good, and to give her all of her medication she has to take. I hope Claire feels better tomorrow and that none of the rest of us get sick!
We have been home for 3-4 hours and Jillian is doing really good, all she has had for pain today in Ibuprofen and says she is fine! It is going to be hard to limit her activity for 6 weeks once she feels good enough to play. Right now she is just laying around watching movies with Jacob. Crazy thing is, if it were an adult that had this surgery we would still be in the ICU on heavy duty pain meds! Kids are so resilient. Jillian has amazed me with her ability to cope and accept that having a congenital heart defect is and will always be part of her life. She understands that her heart will never be 'fixed' and that is part of who she is. She is a wonderful, tough little girl with plenty of attitude and we love her!
We are so blessed, and our prayers were answered. Thank you everyone for you prayers and acts of service we are grateful for such wonderful friends and family! We are hoping we don't have to do this again for at least 5-8 years!