I want to preface this post by saying that I had already had a stressful week before we even got to clinic. I had the last 3 days of school, which any teacher will tell you, is enough to almost kill you off. Then it was Britt's graduation and the senior trip she was going on, which I knew nothing about because she wasn't supposed to be going because we should have been on our Alaskan cruise, I knew no details....but I let her go anyway. Then Abby was sick and I couldn't figure out whether or not to take her in to see the doc, plus I didn't really have time to get her there anyway, so I was worried about her the whole time too. So, by Wednesday, our last day of school, when we had to leave for clinic, I was already pretty maxed out.
On our drive to Salt Lake, the GI doctor called and I let him know that Abby's diet had not improved any of her symptoms. They decided to stop the diet, and start her on a new med. I was excited to hear this because Abby had lost another 3 pounds in the past week and a half. He was glad we were coming up to PCMC so he could drop off the prescription. Clinic was looking good Thursday, Abby's echo looked great and her labs looked good too. When we talked to Dr. Everitt, Abby showed her where the pain was that she had been having in her heart. She told her that she could hear it making a "cackling" noise and that it hurt when she breathed and she couldn't really get a deep breath. When Dr. E listened, she could hear it too, even I could hear it! It almost sounded like something was rubbing down below her heart. They decided to do a chest xray, this showed something weird down there too. So, to be safe, the transplant team decided to move up Abby's annual biopsy and do it ASAP, which turned out to be on Friday. The annual biopsy is more complex than all of the other one's because they go through her leg instead of her neck, because of this, Abby would have to lay still for 4 hours after the 2 hour surgery. I knew is was going to be a long day!
So, Friday was when the fun began. When you do something as often as Abby and I have had her cath surgeries, you develop a routine, and you don't want to break from that routine, it's the "norm." Everything on Friday varied from our routine. It all started when they gave Abby her hospital pants and they were purple!! She has never had purple pants before, they've always been blue, always. Then the nurse asked me where I worked in the hospital! Ha, she thought that since she's seen me so much that I had a job there too. Funny, but not really! I walked Abby down to the cath lab, kissed her, and said my goodbyes. Usually, after I drop her off, I go by a Tribune, go to Rainbow Cafe and buy oatmeal, then sit and read the paper. But, when I got to the newspaper kiosk, all the of the Tribune's were gone!! I had to buy a Deseret News instead. Then they were out of oatmeal!! The entire pot was empty, I couldn't believe it. I sat and read the paper and snacked on a muffin and then headed down to my usual waiting spot down by the cath lab. It's always empty, and I always sit in my same spot. But it wasn't empty, there was one other lady there waiting too, but at least she wasn't in my chair. As soon as I sat down, she started doing this snorting thing. She was totally snorting in big loogies and then gulping them down! It was so sick, and it was a continual thing!! Anyone that knows me knows that I gag over everything, and I couldn't help it, I was completely gagging, I thought I was going to barf. I know I was giving her the biggest crusty looks but she wouldn't stop. I almost went and got a kleenex to give her but I was afraid of what I would hear when she blew her nose. At this point, I realized I still had about an hour until Abby was done, this surgery was twice as long as usual. Then the what-if's started coming. What if she was in rejection? What if her heart stopped beating when she was on the table? What if we had to be admitted again? I couldn't stop. I was really working myself up. Thankfully, Mauri and Jill knew that I would need to be distracted, so they called and texted until Abby was done. I had a minor meltdown, which by this time was much needed. If you ever want to talk to me when I'm most vulnerable, just do it when Abby is in surgery. I have a meltdown every time, it doesn't even matter what they are doing, it's just a rough time for me.
By the time the pager went off, I was feeling a little better, but still pretty worked up. I walked into the cath lab office and Dr. Day had the pictures up on his computer. He started showing me how things looked and from all of the different angles, I thought it was really cool, until he said on one of the pictures of one of the arteries showed a little narrowing. He then proceeded to tell me that this could be the beginning of coronary artery disease!! Now, this is not the thing you throw out flippantly to a heart transplant parent, when there are 2 other kids that have been relisted for new hearts because of coronary artery disease. My heart started beating about 200 beats per minute and I started sweating. Then he said, "but it might now be anything to worry about, I'll talk to Dr. Everitt about it!" Too late Dr. Day, once something like that has been said, it can't be taken back. Hesitantly, I walked upstairs to the waiting room where my 2 friends are always sitting at the desk. But today, only one of them was there! I couldn't believe it, the other one took a day off. They've both always been there, every time, for every surgery. I was bummed. When they finally called me back to see Abby, I was more than ready to see her and make sure she was okay. She looked good, and was already smiling! I love that. But after about 10 minutes, she started to cry. I asked her what was wrong and she said that because she was laying flat on her back, and she had the inflammation around her heart, the pressure was causing her not to be able to catch her breath. She was having a hard time breathing. This was a little scary because she was supposed to lay flat and not move her leg where the incision was, but we had to lift her up a little so she could breathe. We slowly raised her up enough, but not too much. We both finally got comfortable, Abby was closing her eyes, and I thought it would be a good time for me to maybe get a little rest too. After about 5 minutes of rest, the baby next to us started screaming and crying.....and didn't stop, for the entire 4 hours we were waiting! 4 hours of crying!!! At one point, Abby called the nurse in and begged for them to put us in a room, or at least move us to the other side, but everything was full, there was nothing they could do! When the baby would stop momentarily, we could hear the 13-old-boy moaning on the other side of us. He was moaning because he said he had a stomach ache! The nurses were actually laughing at him. Abby and I just kept getting more and more tense, we just wanted to get out of there! Finally, I had to get out of there! I told Abby I was going downstairs to get us lunch. For some reason, I found this new elevator that I had never taken before, it was right by the CICU but I had never seen it before. When it got to the first floor, I stepped out, and had no idea where I was! I was lost. How could I be lost?? We had been everywhere in that hospital. I knew I was kind of by the cath lab, but I didn't know where to go. Luckily, but embarrassingly, the cath lab nurse walked by and asked me how Abby was. I had to admit to her that I was lost! She was totally laughing at me! When I got back and told Abby I got lost on my way to Rainbow Cafe, she was totally embarrassed!
Finally, our 4 hours was up, we were excused to go downstairs to cardiology so Abby could get an echo and talk to the transplant team. She had her echo and then waited for Dr. Everitt. Needless to say, by this time, I was a wreck and Abby was extremely tired. My nerves had been completely frazzled and I was exhausted. Dr. Everitt and Emily started talking to us about the results of the cath. She said that the cath levels looked great and that we didn't need to worry at all about what Dr. Day saw, everything was good, no worries! While we were talking, Emily got the results of the biopsy, 1-0-0, perfect! That score couldn't be any better. Then the bad news. Abby's CNP level had increased, this shows an inflammatory condition which explains what's happening down by her heart. In the echo, they also saw some fluid around her pericardium. Dr. Everitt, started saying that she thought that maybe all of these things that Abby had been experiencing this past 4 or 5 months were maybe related, it could possible be an auto-immune disorder, something like lupus, and that we might have to spend time with the rheumatolgy team. She said that everything could just go away on its own, or everything could just get worse. She also said that she had sent some of her heart tissue to a specialist in Cincinnati to take a look. At this point, I lost it. I think everything from the past week had finally come to a point, and this was the final straw. I just started bawling, right there in front of Dr. E and Emily and Abby. They probably all thought that I was a freak, but I had no control. It was just too much. I don't even know what they said next, except that Dr. E said it might take a while, but that they will figure out what's wrong with Abby. They also want to keep a close watch on her to make sure that she doesn't have an infection where there's the fluid buildup, so we need to go back for clinic on June 4th, one week from Monday. So, the heart function is great, and the cath levels are awesome. Everything else is still up in the air at this point. Abby started her new medicine today to control the inflammation she has in her stomach. Hopefully, this will help with here eosinophilic colitis. My goal is to get her eating again on her own, it's hard to have to force her all the time. She needs to stop losing weight, she's getting too thin. I'll also watch to see if the swelling by her heart gets worse or if she spikes a fever, this is a sign of infection. I hate that I couldn't control my emotions, and that I let it get to the point that I just lost it. I wish I could have waited to have my meltdown when I was alone or at least in the car. This just shows me that it's time for me to start taking care of myself a little bit again, it's been about a year since I have, and now I need to, with school being out, this should be a little easier.
Thank you for all of your responses to my last blog post, it was a hard decision to make whether or not to post Abby's experience, but I can tell from the response we got, that it was the right decision. There must be someone out there that needed to hear it, that's why we were so inspired to share. Also, thank you for concern for Abby, and her health. It makes everything easier knowing that we have the support of so many people, your thoughts and prayers have uplifted us so many times. Things have been hard lately, but we're still tough and we're still ready to fight. There's going to be a time when I don't have anything to blog about, things will just be stable and easier. I don't know when that time is, but we've almost reached our 1-year heart anniversary, maybe that will be the time. I sure hope so.