When Ashley met Andy Pt 6 (More like, when Lucas had Open Heart Surgery)

Before I begin, I must say that some things will be out of order...I didn't write things down as they went, so I remember it all, but maybe not in exact order :)

Surgery was scheduled for August 30. We were told to expect a one week stay, tops. My mom went with me to take him to pre-op the day before so Andy could work. He and my dad came down that evening. Pre-op wasn't too bad- other then the having to use his head vein to get blood :( It was a pretty low key day. We were done with everything we had to do by 12, but were stuck waiting around until 5 for the surgeon to come in and go over the last minute things with us. I didn't sleep a wink that night. My nerves were awful! The next morning came and we went over to wait in day surgery. We played and giggled until it was time to take him back. I had a small break down- scared my baby wasn't going to make it through. We went up to wait in the waiting area. My mom finally convinced me to eat something and brought me some McDonald's back since I refused to leave the waiting area. After the second update, I finally felt comfortable enough to use the restroom. I went and asked the receptionist where the restroom was and she told me, but said I needed to go down to surgery first. I started freaking out! What was wrong with my baby? Why did I have to go down there? The knot was huge in my stomach. I couldn't do it myself so I went to grab Andy. I wouldn't let my mom or dad come down because I didn't want them there at the  time. We went down and waited...and waited and waited. Finally the RN who does the rounds during surgery to update all families came in to talk to us. She told us that once he was in position and about to be cut on, his sats dropped to the low 30's. The surgeon had decided to just go in through his front to get it done much faster. She said that they had the heart/lung machine ready but he finally started resatting nicely. He was ok, but he was going to look a lot worse then we were prepared for. I cried for about 5 minutes but then just told myself to be happy that he was alive and that we had such a great surgeon who took care of my little sunshine.
The surgeon came in about 20 minutes later to tell us how it went. I think he liked the challenge :)
We went to the PICU waiting area and waited for the nurses to come get us to take us back to see him. I wasn't prepared for what I saw. She tried to prepare us, but nothing can prepare you to see your child helpless, unconscious, with tubes and wires ALL over them. I did cry again *I am a big sob fest, after all :)* but his toes were pink!!!!! Not pinkish or gray...or blue, but PINK!! One of the best sites <3.
They did administer sedatives and paralytics to keep him still for about 20 hours after because he was trying to pull his breathing tube out. The next day, they started letting him wake up a little. He did really well and they decided to take his breathing tube out that evening!
I remember the respiratory team coming in to look at him before doing it- I asked if they wanted us to leave. They told me that we didn't have to, so I sat in the corner and watched. I regret that.
They pulled it out with no issues, but then he didn't breathe........for about a minute. I was freaking out a little- nothing like the team standing around his bed and the lead standing in the door keep asking if there's airway. I thought for sure they would be reintubating him, but nope! Lucas let out a WAIL! PHEW!
The next day we held him. I was so so nervous because he had just had open heart surgery, after all. The nurse handed him to me and it was so sweet. I missed holding my little guy. He seemed even more helpless- he still wasn't eating and he was just wore out, but I wouldn't trade those minutes for anything. Daddy held him to- it was funny to see how nervous he was! We were both just scared to move him for fear of hurting something. Our PICU nurses were the best! I know we weren't the first "scared" parents, but I  felt like we were and they made it seem ok.

Daddy had to go home on Friday- I was sad, but we did get to go up to the heart center that day!! That was an experience, too- they are a lot more relaxed (thankfully) up there. We got settled in and I finally felt like we were going to go home in a few days. This is when we met his- and our- favorite nurse. She listened to us when we told her his art line was causing him a lot of pain and got it taken care of- when everyone just kept saying "ok". While he was recovering, I was feeding him a bottle one night when his heart rate dropped. I freaked out a little, but it went back up. The nurse came in after seeing it and I started feeding him again- same thing happened. I was still worried. The nurse called the PICUPICU doctor....HIGHLY! They did an ekg and then sent us back to the PICU just to keep a closer eye on him overnight. It kept happening all through the rest of the feeding but gradually stopped an hour or so afterwards. I thought we were out of the woods. We went back to the heart center the next day- they have someone watching the telemetry monitors there all of the time, so they can keep an even closer eye on it. It stopped happening for the most part for a day or  two.  A few days went by and surgery cleared him to go home, but they wouldn't send him just yet because he still wasn't eating by mouth. They went as far as teaching us how to do NG just in case. The next weekend, we were set to go home Saturday sometime. I went to bed Friday night all excited.....then went back on Saturday and they said he had a fever overnight so they were running cultures.
The cultures came back positive for an infection so we had a 10-14 day stay ahead of us because they were IV antibiotics- ugh! Looking back, though, I am glad he got that infection. It allowed the cardiologists to see his heart block progress up until around day 10 of the antibiotic round when they said they were going to go ahead and put a pacemaker in because heart block could worsen and cause more issues. Surgery was scheduled for the day after meds were done. He had finally started eating at this point so I thought for sure we were going backwards. I felt SO much better going into this surgery. Pre op was the same, but it was a lot easier this time around- I wasn't nearly as nervous. It took just a couple hours and they told us they were done. We went to PICU and waited until he was all situated in his new room and went back to see him. He looked SO much better this time- no breathing tube, very few wires, and already waking up from anesthesia. His pacemaker looked HUGE in his belly though. They told us to expect that since he was so tiny, but it was a lot bigger then I anticipated. The only setback this time was that they had given him a little too much pain medication and his breathing had slowed down quite a bit overnight, but that was easily fixed by giving him something to reverse the effects. We headed back up to the heart center that afternoon. I wasn't nervous picking him up or holding him this time. He was eating like a champ all by himself with no tube! and we were set to go home in a few days. That Friday couldn't have gotten there any sooner! 23 days in the hospital, 3 PICU stays, countless IV's and x-rays, 2 PICC lines, and 2 surgeries later, we were released. I may have been even more nervous to take him home this time over after leaving NICU. Surgery follow up and his first pacer check was scheduled for 2 weeks later. We got the all clear from his surgeon as well as his pacemaker doctor. YAY! We were doing right!
I know I've forgotten some things, and for this, I am sorry. I regret not writing as we've gone, but that won't happen with the next ones :)
Next episode: Changing his PCP, Lucas's first Halloween, Thanksgiving, and Christmas!