I've been an absent blogger once again, but as usual, its for good reason. We have been rather busy in November --- with both some fun, and some not so fun things. Fair warning, this is a LONG post! But there are some details here I really needed to document.
In late September Katie had a follow-up with her cardiologist. It was originally scheduled for October, but due to some issues Katie was having (i.e. shortness of breath, lips turning blue, and almost fainting on us) the cardiologist suggested bumping it up. After the check-up the cardiologist confirmed the hole in her heart was getting larger and said, "well, I think its time to get this thing fixed."
So, off we went in late October for our surgical consult at UVA. After discussion about the location and size of the hole, the surgeon told us that Katie would NOT need open heart surgery (AN ABSOLUTE BLESSING) --- and that she was a great candidate for the catheterization procedure. PHEW - Step 1! The second discussion was how the hole would be closed. We elected to use a device called the Gore Helix. The device basically looks like silk paper fan material in the shape of a circle with a small wire around the edge. It was SUCH an odd feeling to look at this device, hold it, bend it --- knowing that one very similar will be inside Katie FOREVER. Amazing technology -- and Step 2 complete! Next was scheduling. Between my work travel, and Matt's clinical rotations, the holidays, and a baby on the way --- scheduling is an absolute MESS for us. Fortunately, we were able to work things out for Thursday November 21st (also a good date for our surgeon). Step 3 Complete! (Inside my head I'm thinking --- okay, now to get my 4 year old ready for this).
Since Katie was the 2nd case of the day, they requested she be at the hospital at 10:30 AM for surgery prep. The plan was for the actual procedure to begin at 11:30, and would take 2-3 hours to complete. Pre-surgery restrictions were that she could have nothing other than clear liquids (i.e. Water, Apple Juice, Gatorade, Jell-O, etc.) the morning of the surgery, and after 8:30 she couldn't have ANYTHING. Not even Water! My initial thought on this one: Hmmm, I'm curious to see how well that goes.
Knowing that we would have to be at the hospital by 10:30, we didn't want to take a chance on traffic Thursday morning. Instead, we elected to stay in a hotel the night before. This was also a bit of a "treat" for Katie because she loves hotels. Things were going great that morning --- I had explained to her that she couldn't have anything to eat or drink after 8:30. We pumped her full of Jell-O and apple juice that morning right up until 8:30 hoping that would last her. Of course as soon as it was time to leave for the hospital, the "I don't want to go mommy!" started to kick in. Despite the fact that we had discussed everything several times in advance, she was still VERY RELUCTANT about even leaving the hotel to go to the hospital. We finally got there, with Katie still complaining and resisting every step.
Strangely, once we got to the hospital --- Katie was unbelievably cooperative. We checked-in right at 10:30 and were escorted to our room for the day. The nurse got all of Katie's vitals, changed her into the gown, ran a baseline EKG, etc. Once all of that was done, it was about 11 - 11:15. Between 11:15 and 11:30 the nurse practitioner, Christine, came to inform us about what to expect for the day procedurally --- and said that the anesthesia team would be in next to explain the process of adminstering Katie's sleep meds. At this point I was thinking, great --- everything is moving along as expected. FAMOUS LAST WORDS!!!
About 2 hours later anesthesia still had not arrived to our room. My patience was wearing rather thin. Finally at 1:30 I started getting upset. We were now 3 hours behind schedule, Katie was starting to say "I'm hungry" and "I'm thirsty". Who could blame her?!?! And what could I say to her except "Sorry, you can't have anything." After asking for an update, we were told that the case before Katie turned out to be extremely difficult and that the surgeons had a VERY hard time getting access to the whole. The nurse indicated that the doctor was "closing up" now and that he should be out to see us soon. I was really concerned at this point. All I could think about was, if we are going to be on a 3-4 hour delay --- an the case before Katie was extremely difficult --- then how focused and ready will the surgeon be for Katie's surgery? Have they eaten? Will they be rested? I just kept thinking...."THIS IS NOT GOOD!" I expressed my concerns to the nurse and she assuaged some of my fears.
Finally around 2:00 the doctor arrived. He apologized for the delay and gave the same explanation about the case preceeding Katie. Me, being me --- I gave my apologies for the hard case before. Then, I asked him if he was going to be okay and ready for Katie's surgery. YEAH! I did! I know that seems like a completely rude question. And I'm pretty sure my mom and Matt couldn't believe I'd said it. But hey --- this is MY CHILD! If you think I want her in anything but ideal conditions for surgery, you are NUTS. Lesson learned here: Always request to be the 1st case of the day if your child has to have surgery. The worst they can say is No.
Okay! So anesthesia finally showed up with Katie's sedative. It was basically the kids equivalent of vicadin --- something to mello her out. Initially, the plan was to have her walk back to the operating room with the nurse (without Matt or I). Fortunately, we didn't have to do that. They allowed me to take her back and I was able to stay with her until she inhaled enough gas to fall asleep. I'm SO GRATEFUL they allowed me to go with her, because that was Katie's biggest fear about the whole procedure. Probably mine too.
So, finally at 3:30 PM Katie's surgery was underway. I came back to our room, sent out a few updates and Matt called some of our family members. Mom then told Matt and I to go get something to eat while we could. I knew that I wouldn't be able to eat the rest of the night because Katie would be in recovery through dinner and then getting admitted to her room after that. The surgical team called us every hour on the hour with updates (so nice of them)! Sometime between 5 and 5:30 they called us and said the doctor was closing up and he'd be out shortly.
When the doctor came out to see us, he said "it went great!" Which is exactly what you want to hear. He told us the hole was a bit larger than they had expected --- 13 mm instead of 9 mm. As a result, he had to test out a couple different size devices to get a good fit. But in the end he found one that worked perfectly for her. Double Phew! Step 4 -- Surgery Complete!
At this point, Matt left the room again to make some calls and update family. As soon as he got back, they called us to the Pediatric Recovery Unit because Katie was coming out of the OR. When we first arrived she was still completely asleep. It took maybe 5 minutes before she started coughing and waking up. As soon as she was coming awake she looked at me and Matt and said "I WANT OUT!" We looked at each other, then back at her and said, "Out of what, Out of Where?" She said "Out of this bed and Out of here!" Oh my! Not good! The worst part --- she sat STRAIGHT UP in bed when she said it. While I find this kind of funny now --- at the time it was the WORST possible thing for her. Sitting up made one of her incisions start to bleed (fortunately not too badly). And that was how her 8 hour bed rest started. On top of her "I WANT OUT" --- Katie gave EVEYRONE the stink eye after her surgery. The doctor came out to check on her and she just stared at him with an angry look on her face. In fact, that's pretty much the look she gave everyone for about 3-4 hours post surgery. Its kind of funny now, but wasn't at the time. I almost wish I had a picture of that face. Clearly, pictures weren't my priority so I don't have much photo documentation of those little moments.
Thursday night was pretty rough, but we made it. It included 8 Hours of her lying flat on her back and NOT moving her legs, vomiting after attempting food/drink post anesthesia, a 2:45 AM wake-up due to our roommates arrival (a 2 month old with a broken leg), plus either bed pan or bathroom trips every 2 hours. By far one of the worst parts though was the IV --- she LOATHED the IV. It would not stay in place, had to be readjusted multiple times (which was painful for her), and the machine went off every 45 minutes throughout the night because the IV continued to shift out of place. The final straw was that Katie kicked up a little fever during the night. Fortunately, that one resolved itself by mid-day Friday. Side note here --- and I hesitate to mention this, because it seems selfish --- being 7 months pregnant and trying to sleep in those hospital chairs is impossible. Honestly though, it didn't really matter because I was up about every 45 minutes to 1 hour anyways.
Friday morning hospital rounds started at 6:45 --- so we were up early. Katie had several more tests/procedures to get through too --- Another echo cardiogram to assess blood flow around the device, plus another chest X-ray. When they checked her heart and lungs on Thursday post surgery, she had a partially collapsed lung (which apparently can happen with anesthesia and surgery). The Friday chest X-ray confirmed that her lungs were back to normal. WOHOO!!
The final condition of release was Katie had to hold down food, and be fever free. When all those conditions were met --- we were released and headed home. I'm not sure who was more pleased to leave.... me or Katie. Probably Katie! I'm wonder what her feelings on hospitals will be going forward, and how much of this she will remember. Time will tell. For now, I'm just so grateful that her surgery is complete and that it was a big success!!!
I have to brag a little on Miss Katie Bug. She was such a little angel, didn't whine, and barely uttered a single complaint during the entire process. She's been such a trooper through both her surgery and recovering that she's made her mommy and daddy very proud!!!
P.S. I probably have about 100 type-Os and mistakes in this blog post. But I'm done editing. So, just read it as is folks!
