Saturday, July 20, 2013

Hospital Visit: George's CT

At our last appointment with the cardiologist, he told us that he wanted a cardiac CT and angiogram to be done for George. So yesterday was the day for that. We got to go to the new James and Connie Maynard Children’s Hospital at Vidant Medical Center to have it done. It just opened about 3 weeks ago. It’s a very nice building, and they won me over from the very beginning with their free valet parking. Very helpful for a mom with a baby and a heavy diaper bag. Walking in the doors, I had to remind myself that I just walked into a hospital and not an aquarium or a day spa. Everyone was so nice from check-in, to the waiting area, and when we got taken back to George's room.

Our appointment was at 9 a.m., and the CT was scheduled to begin at about 10 a.m. I got George into his tiny hospital gown and Miss Leah, who was with us the entire time, played with him and kept him entertained and distracted.
Nurse Elizabeth and Dr. Nguyen did their examinations of him to make sure he was healthy enough to be sedated for the CT. Everything checked out well, so it was time to get the IV started. This is where the tears began, of course. They numbed his arm so he wouldn’t feel the needle, but he still screamed just from having his arm held out against his will. I was able to hold him on my lap while they did all this, which was comforting for me and hopefully for him. I was sad he was crying, but at least I could hold him and kiss him to try to make him feel better. I would have hated to be sitting in a chair in the room away from him or even out of the room and have his sad little eyes looking at me. They first tried the IV in his left arm, but the vein blew out because of the size needle they needed to use (because he was going to be injected with contrast during his CT, the needle needed to be thicker than usual). So then they looked at his right arm and decided to call the nurse practitioner in to start the IV to make sure they got it this time. Everything went well, and afterwards I was able to lie down on the bed with George on top of me as he sobbed himself to sleep.
I took this opportunity to snap some pictures of the room we were in. The lights in the room changed from blue, to green, and to red. They were like black lights so everything in the room glowed. It was pretty neat. They also had a screen over the bed and on the wall for the children to watch some calming things. The particular shot is of some hands drawing all those fish shapes in the sand.
George napped for about 1 ½ hours, and didn’t wake up even when we were being transported down to CT. We had to wait a little longer than expected because some trauma patients had come in and they got first priority. Finally our turn came and they wheeled us into CT. They got everything hooked up first and then I was able to stand up with George and lay him on the CT bed. This was when he woke up, and he was not very happy. The doctor then had me pick up George again and I held him while they sedated him. It was a strange and almost  scary feeling of holding my little boy while he was being sedated, watching his little eyelids go down and his body first jerking around and fighting the sleep and then finally going limp. I laid him back on the CT, and removed his pacifier. Then they put the oxygen on him and it was time for me to leave the room. I went back to the waiting area and sent my husband an e-mail (I left my phone in the room but had brought the tablet with me) to tell him what was going on. Then one of the nurses came to tell me that the CT would take a bit longer because George's IV had kinked up when they tried to inject the contrast. After this, it did not take long at all. I think the entire process was about 15 minutes. I got to see George immediately following the CT.
He looked so pitiful. I rubbed his head (to comfort myself, because obviously he was totally passed out) and kissed his forehead. And since it’s not every day that a toddler lies perfectly still with his mouth wide open, I took the opportunity to check for new teeth coming in. Finally, they said for me to get back on the bed and get comfortable and they would put George in my arms. They wheeled us across the hall to wait for him to wake up. This took about 30 minutes. During this time, the nurse told me of all the things to look out for when we got home, how George may still be wobbly, look out for vomiting, etc. Then finally my little prince began to wake up! The nurse quickly got his IV out and George was able to fully wake up. I was so happy to see those big blue eyes again!
He was back to his usual self in no time, and took the opportunity to throw a piece of gauze over the edge of the bed, then look over and say ”uh-oh!”. Yep, he was back. We were then wheeled back to the room where he got some apple juice and crackers.
Then after taking a couple of steps for the nurse, we were able to leave! We received a voucher to be able to enjoy some snacks at the Ronald McDonald House in the children’s hospital. Even though George just had a snack, I was HUNGRY! By this time, it was almost 2 p.m. and I was running on one small glass of chocolate milk from breakfast. Now, being a vegan, McDonalds and I are not friends, but I will say that I am grateful for the work they do for the families of tiny patients.
We took our time leaving the hospital, strolling down the main hall, looking out the windows, looking at the fish on the walls, etc. They even had a huge aquarium in the main lobby. I hope that are able to maintain the new hospital and keep it looking this nice. We were very impressed!

Thursday, July 11, 2013

Just One Month Ago...

It was one month ago today that my almost-perfect life hit a major speed bump. I was sitting in the doctor’s office with my son as the cardiologist was telling me that my otherwise healthy little boy had a congenital heart defect and would need open heart surgery. I never would have imagined that either one of my children would have anything wrong with them. They’re both very active, hardly ever get sick, and eat well. There were never any signs of anything like a heart defect in my son. But there we were.

George was diagnosed with a rare congenital heart defect know as Total Anomalous Pulmonary Venous Connection (TAPVC). In addition to the defect, he also has something that the cardiologist had not seen in his 30+ years of experience. He explained it very well to me, but I tend to butcher the relaying of it to others. It has something to do with a hole in his right atrium, where there is some flow, but also some obstruction (this is what the cardiologist had never seen before—the presence of both).
Two days ago, we met with the cardiologist again who was able to get more ultrasound images of George while he was napping. He was very pleased with what he got and sounds very optimistic about the surgery. We have not met with the surgeon yet but he did tell the cardiologist that he wants a cardiac CT and an angiogram done before the surgery to get an even better look at George’s heart. Were all very nervous about the surgery, and it’s difficult to find any good in this situation, but I’ve tried hard to come up with a few things to remind myself that things could always be worse.

-          The cardiologist and the surgeon believe that everything can be fixed in just one surgery. I am so thankful for this, because I really don’t want to have to go through this again.
-          The surgeon is one of the best in our area. He’s the only pediatric cardiac surgeon, but also operates on adults and I’ve heard nothing but good things about the outcomes of his surgeries.
-          The surgery will be done within 5 minutes of our home. I was worried we would have to go all the way to Duke (almost 2 hours away), but Vidant Memorial Hospital has a new heart institute and a new children’s hospital, and the East Carolina School of Medicine is also right here. I think it is safe to say that they are “up to speed” on their medical knowledge.
-          George is a very strong and healthy boy. I believe he will be a fighter and will bounce right back to his normal self within weeks.
-          As much as I would have preferred a vacation instead of a medical crisis, I’m glad that my husband didn’t use up his vacation time yet. He still has about 2 weeks left so it will be great to have him home during the surgery and for George’s recovery. (Honestly, he would probably take off work regardless, but at least this way he still gets paid.)
-          My parents live in our same neighborhood, just 6 houses down from us. Bridget will be moving in with them temporarily during the week of the surgery and for a short time afterwards, so that my husband and I can focus all of our energy on George. But with Bridget being so close by, I’m glad I’ll be able to visit her every day so she knows we still love her.
When I think of those things, I think about how lucky we are, in spite of this diagnosis. Obviously I’m still scared, still worried, as any mother would be. But I’m also doing my very best to be optimistic. Everything will be okay.

Wednesday, July 10, 2013

Our July 4th Holiday

We’ve made it a tradition recently to spend the Fourth of July in New Bern, NC with my husband’s parents. We got to New Bern shortly before lunch. I had prepared some vegan baked beans and maple roasted Brussels sprouts to go with the vegan Kielbasa and hot dogs I brought for myself and the kids. The in-laws provided the hamburgers and hot dogs for the meat-eaters. My husband helped his dad with the grilling while I got to relax for a bit. My husband’s sister and her family arrived just as the food was coming off the grill. It was a pleasant lunch and then we visited for a while. My sister-in-law and her family then left to spend the evening with her husband’s family. Then we left Sugar Plum with my husband’s parents while we took the Charmer with us for a quick trip to Wal-Mart. I needed some things (shampoo, toothpaste, borax, etc.) from there but have not been able to go to our Wal-Mart since a shooting that occurred there back in June. It’s probably for the best, as our Wal-Mart is absolutely disgusting to walk through in the first place. While the New Bern Wal-Mart was still a Wal-Mart, it was far less gross than the one we’re used to.

After our Wal-Mart trip, we all had a quick dinner at Taco Bell (the most vegan-friendly fast food restaurant we have here) and got ready to watch the fireworks. We had a great view from the train tracks overlooking the Trent River.

As the fireworks started, my 17-month-old son was fascinated and loved them while my 3-year-old daughter was terrified and screamed for the fireworks to go away. So we pack up our things and walked slowly back to the car, looking back at the fireworks every few steps. At least I got some pictures of the kids before the fireworks started:

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