Saturday, May 26, 2012
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.
Wednesday, May 23, 2012
We've struggled and and gone back and forth this past year deciding whether or not to share this post. Up until now, we've only shared it with very few, close people. But, after much thought and prayer, we as a family, feel like now is the time. Maybe this is how Abby is supposed to "Save Lives!"
Please remember that this is a very sacred and spiritual experience to us, and it's coming from an innocent 12-year-old. This experience is very real and it means a lot to us. We feel like it's an experience that can change your life. Because it's so sacred and so personal, we ask that you don't copy this or reprint it unless you ask our permission first. It will probably make you cry, and it will really make you think. It could possible make you step back and examine how you're living your life right now, I know I did! Abby wrote this only 5 days after her transplant, on July 17th. It happened the only night, ever, that I didn't stay in the hospital with her. Britt offered to stay and I went to our Sugarhouse house and tried to get some much needed sleep. In the middle of the night, I got the most awesome text, from the most inspiring little girl, that I will ever get. It's our hope in sharing this experience, that you'll be able to see and feel and little of what Abby was to experience that night.
I know that I'm so relieved that Abby made the decision to come back to spend a little more time with us. We don't know how much more time, but we are grateful for every minute we have with her. Every birthday is a milestone! Happy Birthday Abby, thank you for being willing to share your experience with everyone. I hope that it does help to "save and change lives!"
Friday, May 18, 2012
We had some time today to reflect on the past year and think about all of the things that we've learned and the many ways that we've grown. I don't think that I'd want to go through it again, but I feel like I'm a much different person now than I was a year ago, my kids are too. Here some of things that we learned:
- We know everything about the human heart. In fact, I'm pretty much a nurse now too. We were the family that never took medicine for anything, but now we know tons of different meds and their purpose. I know their doses and when we need to make changes. When Abby says restrictive hypertrophic cardiomyopathy, it's awesome! We are medically smart now, and it's fun.
-We've learned how to accept service, and to ask for help when we need it. This was a hard lesson to learn, I've always been very independent. But, we couldn't have survived this past year this without your help, both financially and emotionally. We will be forever grateful. I've learned that you're not weak just because you need help, you're actually strong when you can ask for it.
-We've learned that most people are good, and just want to help. The hard thing for us, is knowing what to allow people to help with. We've been able to see people do so many kind things, in so many different ways. Everyone wanted to help us, even if they didn't know us. This was very humbling.
-I've learned that sometimes when you ask why, or want to figure out an answer, that there might not be one. Sometimes we have to wait for answers, maybe longer even than this lifetime, and that's okay, I don't need an answer for everything right now. I guess it boils down to faith, having faith that there is a reason, and someday we will know what it is, and accepting the fact we just don't know.
-I've seen my kids grow up and mature a lot this past year, they've had to, and they've done such an amazing job with it. All 3 of them came out of this past year stronger and more responsible. I think they also have more character now as well. I'm just impressed with their ability to stay well-grounded and focused with so many things going on. They know what's important, and they held on to that. I'm the luckiest mom around, my kids have already learned the things that really matter, and they know how important it is not to forget these things. There's nothing I like more than watching my kids hang out together and love each other. I've learned that my 3 kids are everything to me, they are what matters most and I would do anything for them.
-I've learned that it's okay to cry, in fact, sometimes it's expected. I guess the hard part is knowing who you can cry with and who you can really open up to, or who is just pretending to care, but they really don't. Sometimes it's hard to know when to put on a fake smile and pretend, and when to allow yourself to really let it loose. Different people have different expectations of you, it just can be hard to know who you can really rely on, especially after things have been hard for a long time, and you still really need it. People can be funny, you just never really know if they'll be there or not.
-I've learned the value of writing. I don't only keep this blog so we'll have Abby's story documented, it's also my therapy, it's helped me in so many ways. I actually really like to write, and I wouldn't have know that without having this blog. Writing is an outlet for me, It's something I need now.
-Over and over and over again, we've learned patience. It seems like this must be something that we're still struggling with because we continue to get so many opportunities to practice. We wait for appointments, for phone calls, for answers, for medicines, for the insurance company, for biopsy results, etc. etc. We just always have to be patient. Maybe someday we'll really learn this lesson so that we can move on.
-We've learned that going through an experience like this can either significantly weaken your testimony or it can strengthen it, one or the other is going to happen. We were blessed enough to experience so many tender mercies and to see so many miracles that our faith, knowledge, and relationships with our Heavenly Father, only got stronger, and I'm so thankful for that.
- We've learned that we aren't the only one's going through a hard time, I think that most people, if not all people are struggling with something most of the time. It's not okay for us to feel sorry for ourselves and to think that we are being picked on, even when we really, really want to. Struggles are just a part of life. I've decided I that we can play the "poor us" game, or we can make the most of the struggles we are going through. This isn't easy, in fact, it's easy for me to type, but not so easy to do. Okay, maybe this is a lesson that I know that I should learn from this past year, but I haven't quite learned it yet, but I will.
- I've learned that there's going to be ups and downs, and there's not always an equal amount of each. Hopefully the "ups' will carry us through the down time. I hope I don't take advantage of the easy times, and that I can remember those times when things get hard again.
There are so many other lessons we've learned or are trying to learn, but this post is already so long. I am just so grateful to my friends and family, and all of the people that have helped us get through this past year. People, and my relationships with them, are what's important. I was going to say that I know this next year will easier than this year, but maybe it won't, I don't really know. But what I do know, is that we can cope with whatever comes our way, we are ready.
Britt graduates on and leaves for her senior trip to California on Tuesday, I finish school on Wednesday, and we go to clinic on Thursday, which is also Abby's birthday! Then it's finally time to relax and recover a little bit :) I think this time is well-deserved and I'm looking forward to it.
**One more thing.....plan on an extra-special post sometime this next week. I think it's finally time :)
Monday, May 14, 2012
Clinic was so good!! Abby's echo looked great, her white blood count is finally almost up to where it should be, her levels are all good.......no problems!! What a relief that is. They wanted us to go back in 2 weeks, but that ends up to be on Memorial Day, so we're going to go the Thursday before, the 24th, which is also Abby's 13th birthday!! I'm sure that there's no where she'd rather be on her birthday than clinic :) Then we'll go back again on June 8th for annual cath/biopsy. Abby and I both felt great after leaving clinic today, we were as happy as could be. We visited with some of our transplant friends for a while, then we had to meet with some people from PCMC and KSL. Abby is going to be featured on their telethon coming up on June 2nd. They had Abby write her story, then they recorded her today, telling it. During the telethon, they'll have Abby telling her story while they show pictures of her. Abby, of course, loved doing it and sounded as cute as ever! They know that we are willing do anything for PCMC, everyone there has always been so good to us. We felt honored that they chose Abby to participate. So, June 2nd, from 7-10:00 pm, plan on seeing it!
Now comes the not so good news. After that, we talked to Abby's GI doctor. Her food allergy panel she had done last week, came back negative; But, they think that Abby's immuno-suppressants are masking the allergies, so we are moving on to the next step. For the next 2 weeks, Abby has to be on a food elimination diet. She can't eat foods that contain cow's milk, soy, wheat, eggs, peanuts or tree nuts, and seafood. After the two weeks is up, we will slowly introduce these foods back into her diet to see what triggers the allergic response. Hopefully, it will only be one of these foods, so it will be easy to eliminate long term, but it could be more than one, it could be many things. I'm worried about the next 2 weeks, Abby is picky already, and it's going to be hard to find foods for her that don't contain the foods on the list. Abby thinks it's going to be easy, because her eosinophilic colitis makes her so she never has an appetite, she never wants to eat anyway. she'll just be glad to not have a stomach ache for a while. If after 2 weeks she's still having her stomach problems, then it's not a food allergy and we'll go to the next plan. If any of you have some good food ideas for us for the next 2 weeks or so, please let me know, I need all the help I can get!!
Thursday night is going to be a great night! Yes, Utah! Organ donation, is giving the 4 staff members from our school that saved Abby's life last year when they did CPR, the Yes, Utah! Award. I'm excited, and I think they deserve it more than anyone else I know!! Without them, Abby wouldn't still be here. I'll take pictures, it's going to be a sweet night.
Friday, as you all know, is May 18th. Last year on May 18th, our lives changed forever.......this year, we are getting out of town. My kids and I are taking the day off and going to Las Vegas!! We are just going to have fun together. I know that many of you don't understand why dates matter, what's the big deal, right? What's the chance of something bad happening on May 18th again? This would have been my thinking a year ago too. Until you've lived through a traumatic experience, I don't think that you can understand the whole "dates" scare. For those of you that knew us last year, just think about how you felt when you heard about what happened to Abby that day, now intensify it 100 times, that's how we feel, we were the ones living it. You can't help but to feel those things again as the date gets near. I find myself thinking, "last year at this time, we were just a normal family that had never even thought of heart problems!" I already know that many of you have been thinking a lot about it, because in the past 2 weeks, I've already had many people tell me what they were doing when they heard, when they got "the call." I've relived the experience so many times, it's just something that people with post-traumatic stress disorder do, and I believe that my kids and I all have a little bit of PTSD, and that's okay, in fact, it's probably expected. I also know that some of you think that I should think of May 18th as a good day, Abby's life was saved that day! And I do, I know it was a good day, but it was also the scariest, hardest day of my life, it was the day I recieved the phone call that no parent wants to receive......ever! It's going to be a hard day, for my kids and I, but we are going to do everything we can to fill it this year with positive, fun memories. We're going to make the most of that day, just like we try to do with everyday now. Because of May 18th, 2011, we know that everyday is a gift and to live it to the fullest, and that's exactly what we intend to do.
Sunday, May 6, 2012
Tuesday, right when I got home from school, I got a call from PCMC. They said they wanted to schedule Abby's annual biopsy. They want to schedule it a little early because of the rejection she was in last time, so we scheduled it for June 8th. This biopsy will be a little different than the others because they will go through her leg instead of her neck. After the biopsy, she'll have to lay still for 6 hours. Abby had a cath just like this the 2nd day we got to PCMC, on May 19th. This was the night that as soon as she woke up from the anesthesia, she had to go to the bathroom, but since she couldn't move she just had to hold if for about 4 hours. It was awful!! They were going to put like a puppy pad under her, but Abby would have no part of that! We just sat watching the clock. I remember it so well, we were supposed to wait until 12:00 PM for her to move, but at 11:45, I couldn't stand it anymore, so I begged and thankfully they let her get up and finally go. I bet she doesn't drink much before this surgery.....lesson learned! This biopsy is important because it will be the baseline for future biopsies and caths, it will be the one they'll always look back at to compare with. I'll be nervous, but I always am. Abby won't, but she never is :) It will be a huge relief if it comes back clean, with no rejection!
Not even 1 minute after I hung up from this phone call, my phone started ringing again, and it said PCMC again too. I thought for sure it was the tranplant team, but it was the surgeon that performed Abby's colonoscopy and intestinal biopsy last week. One thing that I've learned this past year, is that it's usually not good news if the doctor calls instead of the nurse. I had actually forgotten that they hadn't gotten all of the results back from the biopsy, I thought everything came back and looking good, so when he said who it was, I was in a little bit of shock. He proceeded to tell me that the biopsy had shown that Abby has a problem called eosinophilic colitis. There are many different types of eosinophilic conditions, but Abby's is in her large intestine/colon area, this makes it more rare. After reading about the symptoms of EC, it's fits Abby quite accurately. She has a constant upset stomach, diarrhea, stomach pains, no appetite, fatigue, etc. He said the only way to diagnose this condition is with a biopsy, so it was a good thing we went through that, I was beginning to think the whole surgery was worthless. The doctor said that the cause of Abby's EC is one of two things: either it's from food allergies that have developed since she started taking her immuno-suppresant drugs, or it's from the actual medications themselves. On Tuesday, she's having some labs done to look for food allergies, and then we'll go from there.
After I hung up from talking to the doctor, I was feeling so relieved because at least they finally found something, we were all starting to think that maybe Abby was just depressed or something. But then I started learning more about EC, and I wasn't feeling so good about things. If it's a food allergy, it's not going to be a little thing, like nuts or fish, it's going to be something big like dairy or gluten. The most common allergy that's linked to EC is protein. Many kids that have EC, end up not being able to eat very many foods at all, they mostly just drink special shakes. I'm hoping this isn't the case for Abby. I'm trying really hard not to get too worried and ahead of myself yet, but it's hard. If it's caused from her immuno-suppressants, that's not going to be an easy fix either. There's a reason they've put Abby on prograff and cellcept to prevent rejections, they cause the least amount of damage to her other organs and have the least amount of side effects. If we have to make changes in these meds, it's going to change her reaction to all of her other meds as well. Plus, we've seen how well Abby handles going off medications, she always has a problem, it's the "Abby way!" No matter what the cause, at least we'll be moving forward now and we will deal with whatever comes our way.
We need Abby to start feeling better. I feel like I've been saying that for a long time, but at least now we know why. She's to the point now that she doesn't want to eat.....ever. We have to force her most of the time. Today, I heard Britt ask her if it would be easier to just have a feeding tube in, and she said "Yes, I wish I could!" That just shows how bad it's gotten. Her stomach just doesn't ever feel good. Since she's not eating very much, she's very lethargic, and yesterday she started having problems with being light-headed. I'm doing everything I can to make her eat, we've tried everything, and she just doesn't want to, it makes her feel too crappy! I feel like this isn't going to be an easy hurdle, I think that it's a good thing we have the whole summer to work through it. I just have a feeling that the road ahead is a little bit rocky again.
Please continue to pray for her and for the GI doctors and transplant team and that together they can figure out what to do to make Abby feel like Abby again. Abby has just had one thing after another since her transplant, it's hard not to feel a little bit beaten up. Sometimes I just get so discouraged, but then I try to remember that we're not even one year post transplant yet, and everyone says that after that 1-year mark, things do get easier. I'm trying to tell myself that we're just going to encounter everything this first year so that the rest of Abby's life will just be smooth sailing! Abby still has her strong attitude and determination, she's just taking it all as what needs to be done, it is what is, now let's deal with it. The kid is truly inspiring, I don't know how she can always handle things with such poise and composure. I can't help but to learn from her example every single day.
Thank you all for your continued thoughts and prayers!!