*At this point, I am choosing not to care that there are about a bazillion mechanical errors in this blog post.
James had his second heart surgery on Monday, June 2, 2014. Thankfully, this heart surgery was much less invasive, nothing even remotely close to the open heart surgery he had over 2 years ago. This surgery is done via catheter inserted in the groin area, and its purpose was to take pictures, get really accurate measurements, and balloon open the aortic valve. Two small punctures on his upper thigh is very doable when compared to 5 inch incision on his chest! I'll detail the full surgery story-complete with pics, woohoo!-down below.
Beforehand, let me relay the major findings of the surgery. As I mentioned, the main point was to get pictures and measurements, as echocardiograms can only be so accurate, and when considering valvle replacement (as we were), it is really important to get highly accurate readings to determine if that is indeed the best course of action. If the numbers were not great, as we expected, Dr. Garn was prepared to use a balloon to open the aortic valve, which would allow the pressures to stabalize. Dr. Garn provided us with the following picture, which shows James' heart:
The important numbers are the pressures going in and out of the valve. These numbers should be fairly close-if there is a difference, that is called a pressure gradient; the lower, the better. Before surgery, James' pressure gradient was up in the 50s/60s. The picture above shows the valve AFTER Dr. Garn ballooned it open. As you can see in the picture, the pressure going in the aortic valve is 90-95, and the pressure going out is 85-90. Holy success, Batman! That is fantastic news, and I am so glad we decided to proceed with this operation just for this fact. His aortic valve has never loked this good.
We do have one area of concern. You can see in the top right quadrant the pressure through the lower part of the aortic arch drops to 60-65. That drop indicates there is a narrowing somewhere in the arch. Dr. Garn gave the example of a hose. If you pinch it, the water pressure will increase before the pinch as more water is trying to tunnel through at the same time. Once the water gets out on the other side of the pinch, there is less of it at one time, which results in less pressure. There is a similar problem happening with James' aortic arch. So to figure out where the issue is, Dr. Garn started looking at the length measurements of his aortic arch. Through the valve, it is 8.5mm; right above the valve, you can see a tiny indentation in the aorta, on both sides, and the length gets a little smaller, to 7.5mm; then another, larger, indentation, measuring 6.5 mm. As you curve around the arch, it gets back up to 10mm, which is idea. What we are seeing is 2 spots in the arch that are narrower than they should be, also called stenosis. Dr. Garn immediately told us he needed to confer with our surgeon, Dr. Nigro to verify this, but he is fairly certain the 7.5 spot is where Dr. Nigro cut through the aorta to repair it when James was a baby. Thus, it makes sense that this spot is a little more narrow because chances are likely some scar tissue has built up. The 6.5 spot is a little bit of an oddball, as it is not an obvious spot for aorta reconstruction. If Dr. Nigro did make a cut here as well, then chances are likely there is scar tissue here as well, causing the stenosis. If not, then that means James' heart is naturally growing this way, which is a more concerning issue.
So what this all means is that James' valve looks great, and we definitely feel we have several years before we need to revisit it with another balloon or valve replacement. It will have to be constantly monitored of course, but we are pleased with the results in terms of buying more time. James' arch is a little concerning due to those two narrowing spots, especially the 6.5 spot. Dr. Garn said he would probably not balloon open the 7.5 spot, as he would be using an 8mm balloon, and he didn't feel it was bad enough to risk ballooning for 0.5mm. He considered ballooning open the 6.5 spot, but without knowing the exact details of the previous surgery from the surgeon, he decided against it. I am grateful for this, as I would rather get the full picture before attempting anything else. Therefore, Dr. Garn will be conferencing wtih Dr. Nigro, and when we go back for a consultation in about 4 weeks, we will discuss what this means for the future and how we will combat this spot.
All right, if this post wasn't long enough already, here's more details for anyone who is interested!
Monday morning, I took the kids over to my mom's house at 9am (except for Jackson). My mom did a great job with the kids, having them draw pictures with 111 incorporated in them, letting them jump on the trampoline with sprinklers on, making bread with the girls, helping all of them make an awesome welcome home banner for James; they had a blast! By 9:15am, Jared, James, Jackson, and I were zipping over to PCH.
James was perfectly happy. I asked him if he wanted to go to the hospital for surgery, and he said, "YESSSSSS!"
We got to PCH and checked in right at 10am. James was geting hungry at this point, as he wasn't allowed to eat past 6am or drink past 8am. I had woken up up at 5:45am to eat applesauce, a banana, string cheese, and milk. Although he went back to sleep, he was obviously getting hungry and tired, and was thus saying "no" to everything. Nonetheless, all it took was a quick distraction, and he was back to laughing, chatting with me, and running up and down the hall.
He enjoyed taking some pics with my camera.
We went through registration fairly quicly and head back to pre-op on the 4th floor of PCH. The nurse took James' temp, measured/weighed him, went over some basic info with me, and that was pretty much it-they left everything else to be done after anesthesia. We got him changed into his cute hospital jammies, and he loved hanging onto my visitor badge. He got his hospital bracelets, which he also loved.
We were waiting in our pre-op room for only a few minutes when Dr. Garn came in to answer any questions we had. He makes us feel so calm. While he was chatting, another nurse dressed in surgery scrubs came in, and I thought she looked familiar. When Dr. Garn finished, I turned to her and realized it was Jennifer, our absolutely favorite nurse from James' first heart surgey! More than that, she was the nurse who was assigned to James when he came out of that surgery-assigned to him because he needed especially careful care and attention, and she is one of the best. She explained that she had switched from CVICU to the cath lab for more experience, and when she saw James' name pop up on the schedule, she had gotten herself assigned to his case! I was so tickled and relieved to see her, she and I have stayed in touch via FB, and it was so comforting to know someone we knew and trusted with James would be in there besides Dr. Garn. She answered several more of our questions, and Dr. Moray, the anesthesiologist also came in to give us the lowdown. He offered James some versed (sp) to help him get a little sleepy, which we gladly took. Within 10 minutes, James was "floppy", a little goofy, and quickly starting to get lethargic on my shoulder. Jennifer had stayed with us this whole time, and ended up being the one to take James down to surgery. Of course, those last few minutes were seriously hard, though James was awake enough to give Jackson a huge hug.
Jackson just playing while I snuggled with James.
We walked James down to the point of no return-ie, no parents allowed. We gave James some very emotional hugs and kisses, and then transferred him to Jennifer's arms. Surprisingly, James went to her very easily, though he did give me this uncertain look that was hard to take. I am so glad for Jennifer and versed-the combination of these two made this transfer so much less traumatic for James. In moments, she wisked him away, and of course, I had to take a minute to get in control of my emotions. While I knew this surgery was nowhere near as invasive, the entire experience was bringing back too many hard memories from James' first heart surgery. Thankfully Jared was there to comfort me.
We went to grab a quick lunch in the cafeteria before setting up camp in the waiting room on the 4th floor. Jackson did great this whole time, sleeping on and off and being pretty happy otherwise. Jennifer came out about 50 minutes into it to tell us the catheter was in and Dr. Garn was just finishing up measurements-fast! She said James never cried after she left with him, he went under anesthesia very quickly, and they had no problem getting his IV or the catheters in (they do two catheters). They had also given him a dose of blood thinners so his body didn't try to clot around the catheter. Overall, everything was going good.
Jennifer came back out around the 2 hour mark (2:00) to tell us Dr. Garn was done ballooning and was just finishing up. Dr. Garn ended up doing the balloon twice just to make sure it was done well. He had also called in 2 other cardiologists to look at the images, specifically the arch stenosis (we didn't find this out until later). James was doing well with absolutey no concerns. Dr. Garn came out at 2:40 to give us the rundown while James was transferred to the CVICU on the 5th floor for recovery. This is when he showed up the picture I posted above and told us about all the measurements and what they meant. Overall, we were really happy with how things went, as was he, and we all just knew the arch issue would be something we would deal with in the coming months. After he was done, he sent us up to the CVICU waiting room on the 5th floor; we bid the pig hello for the first time in over 2 years, and then proceeded to wait another 20 minutes or so to get into James' room.
We got into James' room right around 3:20 or so. He was sedated, and still had on his breathing mask, though the breathing tube was out (it was a short one that only went midway down his throat). He was receiving dex intravenously to keep him asleep because he needed to stay flat on his back for 5 hours. The catheter site was tightly bound to make sure it was clotting appropriately, especially after having a dose of blood thinners. He was also getting IV fluids to compensate for nothing in his stomach. Otherwise, he looked great, and seemed pretty peaceful sleeping.
About 10 minutes after being in the room though, James started to cry-I should say "try to cry", because his voice was seriously raspy from having a breathing tube. He pulled off his mask, and was trying to open his eyes through his leghargy. He kept crying/moaning, and I tried to calm him down as much as possible-it was hard not being able to pull him into my lap. When it was obvious he was struggling to calm down, the physician came in and gave him some more versed through his IV and uped his dose of dex. He calmed down pretty quickly thereafter, though before he konked out again, I got my James fix: while trying to distract him from crying, I asked him, "Do you want to be all done?" He immediately called out, "Yes!!!" I knew he was somewhat cognizant at that point, and while he was so sad, it made me happy. I continued to distract him and asked him what he needed. He started saying "all done, all done" over and over. That made me sad. I started asking him where each family member was, and when I got to Nana, he whispered, "Nana at house" before drooping off. He loes his big sister, that's for sure! Once he fell asleep, he looked like he was actually relaxed, though it took him quite a while for the whimpering to fully stop.
I couldn't resist at one point laying Jacks in bd with James. This was later on that night though, closer to 7 when James started waking up again-though very slowly this time and without any tears.
During those five hours, Jared headed home to help get the kids dinner. I hung out with Jackson at the hospital, went down to eat a quick hamburger dinner (the cafeteria was all but closed....), and just watched James amid random TV shows and FB posts. Our nurse Joyce popped in and out, but we really tried to just let James rest. Occasionally he would prop his knees up and I would carefully put them down each time to keep him flat.
At some point during those five hours, James blood pressure dropped a little bit, which is normal with Dex, but just in case, they also attached a renal monitor to make sure his kidney function was okay; if it wasn't it would indicate a different problem. His kidney numbers were always fine, and was never a concern.
James finally started waking around 7:50pm. Jared was back by this point to get Jackson for the night, and the kids had gone to Grandma Lautenschlager's house for a few hours with dinner brought over by the Hansons. This wake up was much more calm-he literally just opened his eyes, and said, "Hi Mom". He kept trying to move his legs, so I climbed in bed with him and help him sit up. He definitely seemed really fuzzy, but was awake enough to drink some apple juice and answer some question. When he heard Jackson cry, he immediately called for him, and enjoyed holding him-it was super cute to see that was what woke him up. The nurse and physician checked him over quickly before letting him relax-he didn't like the blood pressure cuff that activated every 15 minutes, so we moved it to his foot, which seemed to help. Within 45 minutes, James had fallen back to sleep.
At that point, I assumed he would probably be out for the night, so I fed Jackson and sent Jared home by 9 to get the kids from his mom and get them in bed. I had requested a pump from the hospital so I could pump around 5 in the morning before Jackson got back to the hospital. I took care of some things online, got my bed set up, and proceeded to shut down for the night. What do you know-right at that moment, James started moving around, and then just woke up. This time, his eyes were fairly clear, and he was smiling and happy-yea! This was around 11pm, and he just seemed so happy! The nurse, Andrea, came back in, and we got his Dex turned all the way off (it had been weaning down since 8) and gave him some tylenol just for some groin pain. He drank a lot more juice and even ate a package of fishies; with that, Andrea also turned off his IV fluids, and I changed his diaper, which was seriously full. Even though his lines were all disconnected, he still had the "ports" in his hand, so I kept telling him to not tough his "bandaids" because Dr. Garn said no. That was very key for James, for some reason, he really understands the concept of Dr. Garn being someone he should not cross (which is weird because Dr. Garn is really nice). We had the same conversation about his surgery bandaid-Andrea took it off and replaced it with a small bandaid. Now, James just calls that spot his "surgery". Once she was done, James literally stayed awake talking and snuggling with me until about 1:30am when I dozed off while we were watching Despicable Me. James had been wheezing a lot (called stridor) because his throat was someone inflamed from the breathing tube, but he was able to doze off too. I woke up right around 2am though because he sounded like he had croup-his coughing woke up him as well. I called his nurse, and she called respiratory. Although they said it wasn't affecting his breathing, he was getting agitated, so they decided to give him a breathing treatment with albuterol. He hated that, cried the entire time. However, it seriously helped and he had no issues with stridor for the rest of the night. Of course, all that crying woke up him, so we ended up watchin Frozen until about 4 in the morning. When the credits started to roll-and seeing James was STILL awake-I turnd the TV off and told James to close his eyes and go to sleep. To my amazement-he did.
I ended up sleeping with James in his bed the whole night-it was either that or put him in a crib, per hospital policy. i wasn't going to leave him, and he would have hated being in a "cage". I loved snuggling with him. Every now and then, he would lean over and just randomly kiss my cheek and say "love you mom". I love this little boy to pieces.
I woke up after sleeping for an hour and a half to pump at 5:30am. I had started not feeling good in the wee hours of the morning, and ended up having a really bad case of the stomach flu, stomach virus, who knows what. My stomach was in knots, I was extremely nauseous, and I was fighting off throwing up. I thought I could sleep it off, but I was still feeling utterly gross while pumping. I called Jared at 2:30am because I thought I was going to have an anxiety attack at the thought of getting sick. He offered to load the kids up in the car to bring me some medicine. He is amazing. I called him again after pumping because I was so miserable. He was so good calming me down even though I am sure he was exhausted afterint taking care of Jackson all night (who did not sleep great either). I managed to doze off after pumping for another half hour until James woke up again around 6:45. I was still feeling sick, but just tried to stay calm in between saying many prayers. James was perfectly happy, and honestly seemed completely back to normal. I ordered him some breakfast and went back to snuggle with him in bed (by the by, I had no fever whatsoever, I was positive my sickness was related to the hamburger I had eaten the night before-blasted cafeteria food. I also told the nurses about how I was feeling, and they didn't seem concerned for James' sake). James ate a banana, fruit loops, applesauce, yoghurt, and milk for breakfast in bed.
After breakfast he had his EKG done, which he loves because he loves stickers. The EKG tech was funny and awesome.
Jared arrived back to the hospital at 9:30, right when James was having his echo done. James was struggling to stay still during the echo. Thankfully, Frozen came on, and he was great thereafter. I was dying, as James was laying in my arms so I could keep him still, and I was fighting throwing up and really realy REALLY needing to nurse a baby or pump. I was able to hold off in both realms until the echo was over-I turned James over to Jared, ran to the bathroom for a moment, and then fed Jackson. I felt a little better having Jared there, drank some pepto bismal, took some nausea meds, and dozed off on the couch with a happy Jackson playing in his carseat next to me. I woke up an hour later feeling a lot better. We took my favorite pics of the boys right after that--at this point, I was convinced James was fine and was ready to go home.
Around 1pm, right after a turkey sandwhich, applesauce, and pudding lunch (nothing for me at all), James started to get really antsy in his bed. I got him out of bed and let him run around for a few minutes without his blood pressure cuff or renal monitor connected. Oops. He pulled off his hospital PJs, so I changed him into his cool spiderman PJs before reconnecting him to his tubes/wires or whatever. We played with legos and cars in his bed for a good hour before the physician on duty came in to finally clear us for dischage. His EKG and echo looked great, we scheduled our follow up, and with that, our nurse, Breanna, got us discharged very quickly. James did great getting his IV pulled out, and adamantly wanted to wear his jammies out the door. We took a quick picture to pay homage to the pig of the 5th floor before departing. I know that sounds silly, but its actually a very sentimental thought to me. I looked at that pig every single day during James' first heart surgery when I went down to the cafeteria for food and for a moment to reclaim my mental strength and emotional well-being. While the fact that he is a pig is silly, he actually means a lot to me. Feel free to laugh, I understand.
James loves this bear statue in the front entryhall. He just looked so cute and so NORMAL running down the halls to bid the bears good-bye.
We finally got home around 3:30, after picking up the kids from Grandma's house. I was still feeling utterly gross, but well enough to take a final picture to mark James' homecoming. As icing on the cake, James immediately grabbed a light-up gun toy and insisted on playing with it the second he walkedin the house Normalcy. I love it.
And that's the end of the longest post I have ever written on this blog (maybe? If not, pretty close, I'm sure!). We love James. We do not love the situation, but we love his resiliency, his strong and independent spirit, and the opportunity to grow together as a family through adversity. We love our family, friends, ward members, and support of everyone who sent messages, watched kids, brought in a meal, called on the phone, or sent mental strength. With every step of James' medical needs, we see so much goodness and blessings from the Lord. So ultimately we are grateful for Him and for His willingness to watch over James so beautifully and entrust him in our care.
Welcome Home James!
