Scar #2
She made me do her hair today.. beautiful huh??
Sunday, July 31, 2011
Pictures!
Hey it's Britt! Here are some pics.. 
Chillin on the Hammock
So happy!!
One of her biggest pills!
Meds!
A little visit from Mckayli and Ali.. Abby loved seeing them!
Playing video games
Scar #1
I'm grateful for..........
I'm just feeling so grateful today for so many things.......it must be time for another grateful list:
I'm grateful for:
My parents. I don't know if I've ever written about how much they've done for us during the past 2 1/2 months. My dad has spent more time with us in Salt Lake than in St. George. He's always taking such good care of Abby and making sure we have everything we need. He's helped us find a place to live, a car to drive, and just a sense of security. My mom has helped so much with Britt and Brock in St. George. It's not easy being a grandma and having 2 teenagers move in with you! She's done their laundry, driven them places, taken them shopping and been there for them when I couldn't be. We would be in trouble without my parents.....thanks mom and dad.
The fun I have with my kids. I've never seen a family that can laugh as much as us; In fact, this past weekend Abby said her chest hurt for the first time, but it was because we were all laughing so hard. It doesn't matter if it's just when we're ordering at Subway and the girl just doesn't get it, or because Brock gets stuck between the front and the back seat of the car when he's trying to climb over the seat, or Britt is falling of the curb in front of the store, or Abby is just breaking out in opera out of nowhere....we just laugh. We know how to have fun together. I love this.
The last couple of days. This will probably sound weird to most of you, but to me it was heaven. Last night I got to make dinner for my kids and then we sat down as a family and ate together. Not a big deal to most of you, but huge to me. I also got to spend some much needed one-on-one time with both Britt and Brock, it felt so good to be able to catch up with both of them. One thing I've learned from all of this, is that it's nice to be able to keep in touch through phones, but it's just not the same as being together. I cherish the weekends when we're together and can fall back into some of our "normal" family routines, it feels right.
Exercise. I started going back to the gym the past couple of days. Those of you that know me, know that I was a 6-day-a-week, 5:00 am, exercise freak......until about 2 1/2 months ago anyway. I've worked out about 5 times since May 18th. Yesterday I started again. Physically, I felt awful. I can't believe how fast I lost everything I had, I'm so out of shape. I have such a long way to go to get back where I was. I'm thinking my body might just be a little tired from all of the stress and lack of sleep too, that probably didn't help, but at least I'm on the right track. Emotionally, I felt amazing. I'm surprised at how much exercise can lift my spirits. I left the gym feeling like things were going to be okay, I felt hopeful again. I didn't realize the rut I was in until after I left the gym. It also gave me something to focus on for myself again. It's been a long time since I've done that, I haven't been able to, but I think it's okay for me to, at least a little bit, again. If you don't exercise, you're really doing yourself a disservice....it can make a huge difference in your life.
My friends. I'm just grateful that they call me every day and remind me that I can do this, and that I'm not inadequate as a parent-even when I feel like I am, and that they love me. They help so much with Britt and Brock when I can't be there. They've become like family to us, my kids feel so comfortable with them now. Everything would have been so much harder without them, and I just hope they know the role they play in our lives now....they're stuck with us. I can't wait for them to be here next weekend, it's been too long!!! We love you!
My faith. I've known all along that we've had help through all of this, we haven't been alone. I look back at what we've done the last few months, and I know that there is no way we would have been able to do what we've done without the presence of the Lord. He's been watching us and taking care of my family every step of the way, this is so obvious as I read back through the blogs. Although for a short time I doubted things and even questioned why this was happening to us, in the end my fatith became stronger than ever. I know why it happened to us, there is no question in my mind now. I know our purpose in this. Even financially, as I look at the growing stack of bills, I just know that things will work out, somehow, things will be okay. Having faith has pulled me out of those hard times.....every time.
Abby. I sit and watch her gulp down all of those pills, everyday, 4 times a day, and she never complains. She's stuck in the house, day after day, unless we get to go the hospital, and she never complains. She's only gotten to spend a few hours with her friends in the past 2 months, and she doesn't complain about that either. She has to wear a mask and carry an oxygen tank with her when we go out in public, and she doesn't say a word. She doesn't get to live with her brother and sister or her dogs and she hasn't been home since the morning of May 18th, and she's never complained about it once. She spends 3 days a week at the hospital with doctors poking, prodding, pushing, putting stickers all over her and then taking them off again, asking her questions, having surgeries, getting her blood drawn, etc. and I haven't heard her say one negative thing about it. She just takes it all in stride.....she's decided it's what needs to be done and she deals with it, and that's that. She just thinks why complain??? it's going to happen anyway! When she can take things so easily, it makes it easier for me. She is an example to everyone, we can all learn from her attitude. I truly believe that one of the reasons she has recovered so quickly is her outlook on life and what she's going through. She's been able to stay focused and positive through all of this. What an inspiration. I'm excited for her story next week on Mormon Times, I think even more of her attitude and her experiences will be shared.
I have so much to be grateful for, the list could go on and on. It just feels good to be getting to the point where I can relax a little bit....maybe just a little bit, but more and more every day. Every day that Abby's heart is beating inside her, I know it's getting stronger and stronger, and become more of her own. Her body is accepting it more and more each day. Tuesday we go back to PCMC for another cath and biopsy and clinic day, these days are long and stressful, but the more often we get postivie results, the easier these days will become. Thank you for your continues prayers and support and love, we can always feel it here in our little "Sugarhouse House!!"
I'm grateful for:
My parents. I don't know if I've ever written about how much they've done for us during the past 2 1/2 months. My dad has spent more time with us in Salt Lake than in St. George. He's always taking such good care of Abby and making sure we have everything we need. He's helped us find a place to live, a car to drive, and just a sense of security. My mom has helped so much with Britt and Brock in St. George. It's not easy being a grandma and having 2 teenagers move in with you! She's done their laundry, driven them places, taken them shopping and been there for them when I couldn't be. We would be in trouble without my parents.....thanks mom and dad.
The fun I have with my kids. I've never seen a family that can laugh as much as us; In fact, this past weekend Abby said her chest hurt for the first time, but it was because we were all laughing so hard. It doesn't matter if it's just when we're ordering at Subway and the girl just doesn't get it, or because Brock gets stuck between the front and the back seat of the car when he's trying to climb over the seat, or Britt is falling of the curb in front of the store, or Abby is just breaking out in opera out of nowhere....we just laugh. We know how to have fun together. I love this.
The last couple of days. This will probably sound weird to most of you, but to me it was heaven. Last night I got to make dinner for my kids and then we sat down as a family and ate together. Not a big deal to most of you, but huge to me. I also got to spend some much needed one-on-one time with both Britt and Brock, it felt so good to be able to catch up with both of them. One thing I've learned from all of this, is that it's nice to be able to keep in touch through phones, but it's just not the same as being together. I cherish the weekends when we're together and can fall back into some of our "normal" family routines, it feels right.
Exercise. I started going back to the gym the past couple of days. Those of you that know me, know that I was a 6-day-a-week, 5:00 am, exercise freak......until about 2 1/2 months ago anyway. I've worked out about 5 times since May 18th. Yesterday I started again. Physically, I felt awful. I can't believe how fast I lost everything I had, I'm so out of shape. I have such a long way to go to get back where I was. I'm thinking my body might just be a little tired from all of the stress and lack of sleep too, that probably didn't help, but at least I'm on the right track. Emotionally, I felt amazing. I'm surprised at how much exercise can lift my spirits. I left the gym feeling like things were going to be okay, I felt hopeful again. I didn't realize the rut I was in until after I left the gym. It also gave me something to focus on for myself again. It's been a long time since I've done that, I haven't been able to, but I think it's okay for me to, at least a little bit, again. If you don't exercise, you're really doing yourself a disservice....it can make a huge difference in your life.
My friends. I'm just grateful that they call me every day and remind me that I can do this, and that I'm not inadequate as a parent-even when I feel like I am, and that they love me. They help so much with Britt and Brock when I can't be there. They've become like family to us, my kids feel so comfortable with them now. Everything would have been so much harder without them, and I just hope they know the role they play in our lives now....they're stuck with us. I can't wait for them to be here next weekend, it's been too long!!! We love you!
My faith. I've known all along that we've had help through all of this, we haven't been alone. I look back at what we've done the last few months, and I know that there is no way we would have been able to do what we've done without the presence of the Lord. He's been watching us and taking care of my family every step of the way, this is so obvious as I read back through the blogs. Although for a short time I doubted things and even questioned why this was happening to us, in the end my fatith became stronger than ever. I know why it happened to us, there is no question in my mind now. I know our purpose in this. Even financially, as I look at the growing stack of bills, I just know that things will work out, somehow, things will be okay. Having faith has pulled me out of those hard times.....every time.
Abby. I sit and watch her gulp down all of those pills, everyday, 4 times a day, and she never complains. She's stuck in the house, day after day, unless we get to go the hospital, and she never complains. She's only gotten to spend a few hours with her friends in the past 2 months, and she doesn't complain about that either. She has to wear a mask and carry an oxygen tank with her when we go out in public, and she doesn't say a word. She doesn't get to live with her brother and sister or her dogs and she hasn't been home since the morning of May 18th, and she's never complained about it once. She spends 3 days a week at the hospital with doctors poking, prodding, pushing, putting stickers all over her and then taking them off again, asking her questions, having surgeries, getting her blood drawn, etc. and I haven't heard her say one negative thing about it. She just takes it all in stride.....she's decided it's what needs to be done and she deals with it, and that's that. She just thinks why complain??? it's going to happen anyway! When she can take things so easily, it makes it easier for me. She is an example to everyone, we can all learn from her attitude. I truly believe that one of the reasons she has recovered so quickly is her outlook on life and what she's going through. She's been able to stay focused and positive through all of this. What an inspiration. I'm excited for her story next week on Mormon Times, I think even more of her attitude and her experiences will be shared.
I have so much to be grateful for, the list could go on and on. It just feels good to be getting to the point where I can relax a little bit....maybe just a little bit, but more and more every day. Every day that Abby's heart is beating inside her, I know it's getting stronger and stronger, and become more of her own. Her body is accepting it more and more each day. Tuesday we go back to PCMC for another cath and biopsy and clinic day, these days are long and stressful, but the more often we get postivie results, the easier these days will become. Thank you for your continues prayers and support and love, we can always feel it here in our little "Sugarhouse House!!"
Thursday, July 28, 2011
4 transplants in 5 weeks.........wow!!!
I wish everybody could hang out with Abby for just a few minutes. You would be surprised at how great she is doing, you would be able to see what I get to see every single day! She looks just like she did before her heart, if not better.....her cheeks are actually pink! She's laughing and feeling good almost all of the time, it is the greatest sight. It's still just surreal to think that she has a different heart beating inside of her now, it's an awesome thing to think about. I think about it every single day so that I remember the miracle we're living.
We started out the day yesterday with Kathy Aiken filming for The Mormon Times TV show. Abby did amazing...in fact, better than ever. The story will run a week from Sunday, on August 7, at 10:00 on KSL. It should be excellent, Abby talked about some great experiences she's had through all of this. I think it will top all of her news stories, she just sounded so....real. I can't wait to see it, it should be inspiring. Abby is very natural in front of the camera, it's fun to see.
Today we spent the day at the cardiology clinic. They took blood, did a chest xray, an ekg, and an echo. Then the docs looked at all the results and examined Abby. They were a little concerned about an extra little heartbeat they could hear sometimes, so they hooked her up to what's called a holter monitor. She's got 3 wires hooked up to her chest and she carries around a little device that monitors her heart rhythm. She just has to keep it for 24 hours. They don't think this a problem with the heart, but maybe a med adjustment problem. We'll find out more next week. I'm nervous the whole time they're examining Abby, I just hold my breath until they tell me she's doing fine. I know I'll relax a little more as time goes on, but this whole new heart thing is still pretty scary to me. The lab had a hard time finding somewhere to poke Abby again today too, that's the worst. She's got so much scar tissue and bruising that it's hard for them, it took them 2 pokes today. Abby said it doesn't bother her anymore, she doesn't even flinch when they stick the needle in, she still loves to watch it too....crazy kid! Tuesday we go back for another cath and biopsy, they'll be weekly for about a month, then they space out a little more as time goes on. Hopefully she'll just continue to get stronger and stronger with her new heart, I know she will, it's going to be like the rest of this journey......just perfect.
I can't remember if I talked about how there were 4 heart transplants at Primary Children's in a 5-week period, but we met the 4th one today. There's Abby, another 11-year-old girl soccer player that just turned 12 a couple of weeks ago, a 13-year-old girl that's a dancer and gymnast, and today we met the 4th heart recipient. You won't believe it, but it's a boy from Idaho that's 15-years-old. Nice, nice kid...in fact, all of these kids are extremely great kids. This happened to them for a reason. 4 kids that all needed new hearts within a 5-week period, and they all got them in time and are doing well now......now that is a miracle too!!! I love meeting these families and spending some time talking to them, we can relate to each other and validate what we're going through. I'm so grateful that we all got to go through this together, what a great thing. We will keep a close connection with these other families forever.
We're still working hard at keeping Abby away from germs. We don't go anywhere, except PCMC. We are going to go to a drive-in movie this week because Abby wants to see Harry Potter so bad. We're both looking forward to that. We're also going to start taking trips up the canyon for picnics and to get outside. But, that's about it. We want to go home so bad that we aren't going to risk getting her sick. So once again, if you're sick, please wait and visit another time; Or if you've been around other sick people, you just might not know it yet, but you could have it too, it's just not showing yet. Please work with us with this, so we can get back to St. George.....fast. I'm aiming for October 15th, I don't where that date came from, but it's my new goal date. We'll still have to make frequent trips here, maybe even weekly, but it's worth it to be home as a family again. Brock and Britt are on their way here right now, woohoo! It's time for some family time. Brock will have to go back on Sunday so he can be back for football, but I think Britt will hang out with us for a little while. I have planned a trip down to St. George, just me, on August 10th and 11th, if everything is still going well. My parents will stay with Abby while I go to a couple of meetings for school....I just can't stay away anymore, I need to be a part of the beginning of the school year. Even if it is just for 2 days, and I'll be at work, I still can't wait......it will be the first normal things I've done in 2 1/2 months. I hope I won't have hard time leaving Abby for a couple of days, she probably needs a break from me anyway.
Things here are good, Abby feels good, her heart works well and she's happy.......and that's what's important. We are so grateful for all of you. Thank you to everyone that's expressed to me how the blog and Abby have changed their lives and inspired them in some way, it makes all of this more worth it!!
We started out the day yesterday with Kathy Aiken filming for The Mormon Times TV show. Abby did amazing...in fact, better than ever. The story will run a week from Sunday, on August 7, at 10:00 on KSL. It should be excellent, Abby talked about some great experiences she's had through all of this. I think it will top all of her news stories, she just sounded so....real. I can't wait to see it, it should be inspiring. Abby is very natural in front of the camera, it's fun to see.
Today we spent the day at the cardiology clinic. They took blood, did a chest xray, an ekg, and an echo. Then the docs looked at all the results and examined Abby. They were a little concerned about an extra little heartbeat they could hear sometimes, so they hooked her up to what's called a holter monitor. She's got 3 wires hooked up to her chest and she carries around a little device that monitors her heart rhythm. She just has to keep it for 24 hours. They don't think this a problem with the heart, but maybe a med adjustment problem. We'll find out more next week. I'm nervous the whole time they're examining Abby, I just hold my breath until they tell me she's doing fine. I know I'll relax a little more as time goes on, but this whole new heart thing is still pretty scary to me. The lab had a hard time finding somewhere to poke Abby again today too, that's the worst. She's got so much scar tissue and bruising that it's hard for them, it took them 2 pokes today. Abby said it doesn't bother her anymore, she doesn't even flinch when they stick the needle in, she still loves to watch it too....crazy kid! Tuesday we go back for another cath and biopsy, they'll be weekly for about a month, then they space out a little more as time goes on. Hopefully she'll just continue to get stronger and stronger with her new heart, I know she will, it's going to be like the rest of this journey......just perfect.
I can't remember if I talked about how there were 4 heart transplants at Primary Children's in a 5-week period, but we met the 4th one today. There's Abby, another 11-year-old girl soccer player that just turned 12 a couple of weeks ago, a 13-year-old girl that's a dancer and gymnast, and today we met the 4th heart recipient. You won't believe it, but it's a boy from Idaho that's 15-years-old. Nice, nice kid...in fact, all of these kids are extremely great kids. This happened to them for a reason. 4 kids that all needed new hearts within a 5-week period, and they all got them in time and are doing well now......now that is a miracle too!!! I love meeting these families and spending some time talking to them, we can relate to each other and validate what we're going through. I'm so grateful that we all got to go through this together, what a great thing. We will keep a close connection with these other families forever.
We're still working hard at keeping Abby away from germs. We don't go anywhere, except PCMC. We are going to go to a drive-in movie this week because Abby wants to see Harry Potter so bad. We're both looking forward to that. We're also going to start taking trips up the canyon for picnics and to get outside. But, that's about it. We want to go home so bad that we aren't going to risk getting her sick. So once again, if you're sick, please wait and visit another time; Or if you've been around other sick people, you just might not know it yet, but you could have it too, it's just not showing yet. Please work with us with this, so we can get back to St. George.....fast. I'm aiming for October 15th, I don't where that date came from, but it's my new goal date. We'll still have to make frequent trips here, maybe even weekly, but it's worth it to be home as a family again. Brock and Britt are on their way here right now, woohoo! It's time for some family time. Brock will have to go back on Sunday so he can be back for football, but I think Britt will hang out with us for a little while. I have planned a trip down to St. George, just me, on August 10th and 11th, if everything is still going well. My parents will stay with Abby while I go to a couple of meetings for school....I just can't stay away anymore, I need to be a part of the beginning of the school year. Even if it is just for 2 days, and I'll be at work, I still can't wait......it will be the first normal things I've done in 2 1/2 months. I hope I won't have hard time leaving Abby for a couple of days, she probably needs a break from me anyway.
Things here are good, Abby feels good, her heart works well and she's happy.......and that's what's important. We are so grateful for all of you. Thank you to everyone that's expressed to me how the blog and Abby have changed their lives and inspired them in some way, it makes all of this more worth it!!
Tuesday, July 26, 2011
Cath and biopsy=perfect results, no rejection!
Wow, what a long day we had today. We had to be at PCMC at 6:00 this morning to check in for Abby's cath and biopsy. Because I'm such a spaz at being on time, we were there at 5:55, I know that's crazy and I learned my lesson since they didn't even take her down until 7:30. I felt so bad when they came in to start Ab's IV and they couldn't find a place that didn't have scar tissue build up. Her arms are still covered in bruises and little holes, they finally put one in a place that is usually very sore, but they had no choice. While Abby was in her surgery and I was sitting in the waiting room.....again, I couldn't help but thinking, "You know what? I'm getting really tired of all of this. Too many IV's, too many kissing her goodbyes on the way to surgeries, too many times sitting and waiting with the pager, too many echos and xrays and ekg's and labs and .........just too many!!!" There just comes a point when you reach your limit, and I was there! But, then I remembered where we are today and where we've come from since May 18th. I had to put things into perspective a little bit. We could've still been sitting in our Sugarhouse house waiting for a heart, but instead we've already been discharged from the hospital and Abby feels like a new kid! So, I only cried and felt sorry for myself for a minute, and then I snapped out of it. Abby was finished with the surgery at about 9:00, then we had to go to the pacu for recovery. When I saw her she was already awake and asking for a slushy.....there's nothing quite better than a slushy from PCMC! After about 20 minutes, Ab was asking if we could get going, she was ready for clinic, but they made us wait about an hour for her to really wake up. Then it was down to the cardiology department for more tests. Abby had an echo and an ekg, then we visited with all of the sweet docs and nurses for a while. We sure do love all of the doctors and nurses on Team Doman, we've become pretty attached to all of them. Thursday they promised to wear their shirts so we can have a photo shoot, I'll post pics later. Finally, at about 1:30, we were done! The good news, really, really good news is........Everything looks great, even the biopsy-no rejection :) Abby's new heart is working fabulously, I'm pretty sure it was meant to be, it was a perfect match. I'm again reminded of how grateful I am for the donor family, what a choice they had to make; But their decision saved Abby's life. I hope one day they can sit down and read this blog and realize the incredible role they played in Abby's miracle. We celebrated by going out to dinner, which is kind of a trick because we can only go if we sit on the patio, it's not prime time, and we stay in the shade. But, we followed all of these instructions and had a nice dinner. The people at the Dodo treated Abby like she was royalty when they found out what was up with her and why she had to be isolated, they were awesome, we'll probably go back! Worrying about germs and sickness all the time can be draining sometimes, but it's our new life, so we just better adapt.
Tomorrow morning we have Kathy Aiken from KSL coming to do the Abby's follow up story. As soon as I know when it will be showing, I will let you know. Abby loves the interviews, she's always so poised and knows just what to say. I always freak out a little and have to put on a cool face when really, inside, I'm a mess. I really don't like being on TV, at all, maybe this time they will just let smooth Abby do the talking! This week we also get to hang out with my sister and brother-in-law and their kids who are in town, we can't wait, it's been too long since we've seen them. Thursday is back to PCMC for some more tests and clinic again. I wonder how long I'll be so nervous when we go there, will I ever fully be able to trust this new heart? I hope so.
Tomorrow morning we have Kathy Aiken from KSL coming to do the Abby's follow up story. As soon as I know when it will be showing, I will let you know. Abby loves the interviews, she's always so poised and knows just what to say. I always freak out a little and have to put on a cool face when really, inside, I'm a mess. I really don't like being on TV, at all, maybe this time they will just let smooth Abby do the talking! This week we also get to hang out with my sister and brother-in-law and their kids who are in town, we can't wait, it's been too long since we've seen them. Thursday is back to PCMC for some more tests and clinic again. I wonder how long I'll be so nervous when we go there, will I ever fully be able to trust this new heart? I hope so.
Sunday, July 24, 2011
Life in our Sugarhouse house.....
There aren't very many things I hate more than saying goodbye, especially when it's to my kids. I just had to send Brock and Britt to St. George, and Abby and I had to stay here. Because of football, Brock will only be able to be with us on the weekends and that's if I can get him a ride! Britt will be able to spend a little more time here, at least until school starts anyway. I completely hate this part of what we're going through. It's hard.... really, really hard. I hate not really knowing what's going on in their lives, and especially not really being a part of them. We are pretty close, we have so much fun together, and we really do like spending time together-it's what we do. I feel like we're closer than lots of families, I just hope we can maintain that for the next few months. Maybe, and it helps me to think this way.....maybe we have become so close so that we will be able to make it through this hard time. Maybe all of the time we've spent in the past, building our family, has been for this one purpose, for this time in our lives. I just have to believe that we can do this, we've done everything else up to this point.....and we can do this too. I talked to the transplant team and begged them to let us go back to St. George sooner, but we just can't. We still have to be close to PCMC just in case something happens. I know I'm just trying to rush things again and I shouldn't, I still just need to be patient, it will happen soon enough, but it's hard. For all of you that are home, with your families there with you, all together.....I can't help but be jealous and I sure hope you don't take this time for granted, because you just never know. I ache for the day that we're back in our house in St. George, just hanging out together, and not having to say goodbye!!!
It does feel good to be out of the hospital though! We left yesterday, just 10 days after the transplant....I hate to say it, but it really is another miracle, who can leave the hospital only 10 days after having heart transplant??? It was kind of interesting though, before we left I had to go through discharge training. I had to be trained to take Abby home, and even though we're home, we have to spend 3 days this week back up at the hospital. Tomorrow, Abby has to get her labs done and an echo, just to make sure everything is okay after taking the chest tubes out. Tuesday is Abby's big day. She has another cath and biopsy to check on the heart and on the mild rejection, keep your fingers crossed for good results on this day. She also has her clinic with the transplant team. Thursday is another clinic day. Wednesday is a good day, Kathy Aiken, with KSL is coming back to do their follow up story on Abby. Abby likes being on TV and being interviewed, me...... not so much, but I will do it. I will let you know when it will be on. The KUTV interview has also been posted, Britt linked it on the side of the blog if you missed it. I think Abby did a great job and I loved how she linked it to organ donation, she really is a superstar!
The next 5 weeks are going to be hard, not hard like when we were waiting for the heart, or when we were in the hospital, but hard because we can't do anything. We can't really go anywhere or do anything. We will have a lot of down time. So call me, text me, facebook me...just talk to me so I don't go crazy. Please come visit with us, but only if you're not sick. We will not be happy if we work so hard on not going anywhere to catch germs, and then someone brings them in to us, that won't be fair. You can always visit Abby later, we're not going anywhere anytime soon!! But, as soon as we get the okay, probably the first part of September, we are going to take a day trip to St. George!! Maybe we'll shoot for that on my birthday on the 14th, that can be Abby's present to me :) We just need to keep praying for Abby to stay healthy so that we can move back by November 1st!
** If any of you are heading up to Salt Lake on Friday, any time after 10:30 am, let me know....I'm trying to find up here for Brock; Or if you're heading from Salt Lake back to St. George on Sunday night, same thing, just let me know. It will be just like this for the next 4 weekends....my poor kids might have to take up hitchhiking!!
It does feel good to be out of the hospital though! We left yesterday, just 10 days after the transplant....I hate to say it, but it really is another miracle, who can leave the hospital only 10 days after having heart transplant??? It was kind of interesting though, before we left I had to go through discharge training. I had to be trained to take Abby home, and even though we're home, we have to spend 3 days this week back up at the hospital. Tomorrow, Abby has to get her labs done and an echo, just to make sure everything is okay after taking the chest tubes out. Tuesday is Abby's big day. She has another cath and biopsy to check on the heart and on the mild rejection, keep your fingers crossed for good results on this day. She also has her clinic with the transplant team. Thursday is another clinic day. Wednesday is a good day, Kathy Aiken, with KSL is coming back to do their follow up story on Abby. Abby likes being on TV and being interviewed, me...... not so much, but I will do it. I will let you know when it will be on. The KUTV interview has also been posted, Britt linked it on the side of the blog if you missed it. I think Abby did a great job and I loved how she linked it to organ donation, she really is a superstar!
The next 5 weeks are going to be hard, not hard like when we were waiting for the heart, or when we were in the hospital, but hard because we can't do anything. We can't really go anywhere or do anything. We will have a lot of down time. So call me, text me, facebook me...just talk to me so I don't go crazy. Please come visit with us, but only if you're not sick. We will not be happy if we work so hard on not going anywhere to catch germs, and then someone brings them in to us, that won't be fair. You can always visit Abby later, we're not going anywhere anytime soon!! But, as soon as we get the okay, probably the first part of September, we are going to take a day trip to St. George!! Maybe we'll shoot for that on my birthday on the 14th, that can be Abby's present to me :) We just need to keep praying for Abby to stay healthy so that we can move back by November 1st!
** If any of you are heading up to Salt Lake on Friday, any time after 10:30 am, let me know....I'm trying to find up here for Brock; Or if you're heading from Salt Lake back to St. George on Sunday night, same thing, just let me know. It will be just like this for the next 4 weekends....my poor kids might have to take up hitchhiking!!
Discharge
It's Britt! Here are some pics of leaving the hospital..
..Friday, July 22, 2011
Seeing Abby's heart and a meeting with the docs about what happens next!!
What a difference a day makes. Yesterday was a day full of surprises, all good surprises too! good visitors, good doctor visits, good news, just a good day.
We'll start with the care conference or meeting with the doctors and the transplant team. They told us how well Abby is doing, even her right lung is almost better. The heart is working really well, no problems. They explained again that rejection is not as big of a deal as it sounds. It's going to happen occassionally, and we shouldn't freak out. My kids and I decided that it shouldn't be called "rejection," just...."miscommunication" or a "misunderstanding" between the heart and the body. They talked about what happens next, this is what I liked to hear. Abby will have to keep her oxygen probably for about another month, it's just to help with her pulmonary hypertension. She will pretty much be on house arrest for the next 4-6 weeks. No going to movies, stores, people's houses.....anywhere, except PCMC of course. This will be a tough time for us, we'll just be counting down the days. She just doesn't have an immune system right now, at all, that's why we have to be so careful. I asked about driving to St. George for a couple of days, but we can't do this until the 4-6 week period is up. She still could go into arrythmia and they want to keep a close eye on her. After this time is up, if she doesn't have any problems, she'll be able to do just about anything. We'll be coming up for appointments twice a week, getting biopsies, echos, xrays, and monitoring her meds. The good news is that if all goes as planned without any problems, we'll be back living in St. George and me working by November 1st, which is when my insurance lapses! I can't even believe it, this was a huge relief for me. We'll still have to travel to Salt Lake at least once a month, but that's okay...we can do that! I know I was so worried about all of her meds, but they'll taper off a little at a time. They also talked to me about the financial stuff, and how to deal with it and keep things organized. This was a huge help because I have a stack of bills about as tall as the Empire State Building. I haven't even opened most of them. Good thing we'll have lots of time to take care of this in the next month. Just to let you know how good Abby feels, her questions to them was, "How soon until I can run???" They just told her to let her incision and sternum heal up and then she can do what she feels ready to do! This whole process is mind boggling (Britt, I know you love it when I say this word!) She only got her heart 9 days ago!!! We won't be going home today, but almost certainly tomorrow. They just took her last chest tube out and they have to monitor her for 24 hours after. It's the only thing keeping her here. Britt said she's posting the video of them taking Abby's chest tube out this morning, but if I were you I wouldn't watch. I couldn't, I would have passed out for sure. Right now, the only thing that she is attached to is oxygen. I think back to 9 days ago when she was connected to all of the machines after her transplant, and now they're all gone. How can this not be a miracle? I'm just amazed every day with the things they can do medically...it's awesome. Did you know that the wires that she's had on the outside of her belly were going in through her skin and touching her heart. It was an extermal pacemaker that was put in just in case. Luckily, they didn't have to use it, and they're gone now, but pretty cool that it can be done. What a great meeting.......all good news. I'm so grateful for all of Abby's doctors and her transplant team and the nurses and everyone involved here. They always went out of their way to take perfect care of Abby, we felt very loved and will really miss many of the people here, they're our friends now. In some ways it will be hard to leave here, but it's also a huge relief.
The next really cool thing yesterday was seeing Abby's heart. We are so grateful for Dr. Kaza for setting this up for us and for Meri's friend in the lab, Lance Erickson, for bringing it to us to see. They just carried it in a little tupperware container. When they pulled it out, I was grossed out. I couldn't believe how huge it was. We compared it to Abby's fist, which is how big it was supposed to be, and it was more than double the size, it was even way bigger Brock's fist, almost both of his fists. They opened it up and showed us the inside and how thick the lining was. You can see it in the pictures. Dr. Kaza was so great, he taught us all about how the heart should function and showed us were Abby's was having such a hard time. He told us again that Abby's heart was almost worthless, it wasn't really doing anything. We are just so blessed to have gotten her heart when she did, it was so much sicker than anyone thought. Britt and Brock loved to hold it and really examine it. I held it, but didn't really want too. As long as I didn't think that this was Abby's heart, I was okay. When that thought came to mind, I felt a little queasy. I didn't breathe the whole time I was holding, which was only a second, because it was really stinky! I only had a slight urge to chuck it at the wall, but then they told me how much they can learn by looking at her heart, and I decided I wouldn't ruin it. They asked if they could keep her heart longer than most because of all of the problems, they said it was a great teaching tool. I asked if they could tell anymore about how long her heart had been sick, or if she's had it since birth and it had just gotten worse, or what exactly happened......but they couldn't. We'll never know. Abby absolutely did not want to touch it. I can understand, it's just too weird to be holding your own heart. We just kept saying how cool it was that she got to see her own heart, most people don't get to do that. It was an experience I'll never forget. This sounds weird, but for some reason after seeing the heart, I felt better about the transplant. Maybe, then I knew that she had to have a new heart, up to that point I just had to believe what everyone was telling me. It's hard to explain, but it was good for us to see it!
Paul Cardall came to spend time Abby again yesterday, it was good to see him again because he's always so inspirational. It makes Abby remember what a miracle she is and to always look to the future and be positve. Hopefully we'll maintain this relationship as well as with all of the other "heart" people we've met recently. You just form an instant connection with each other, it's awesome. Thanks to Ali, her sister and her cousin, for their visit yesterday too, it was just what we needed. We learned a lot from it too, just what the Doman family needed. Diane-thanks for lunch and buying so many T-shirts....there's nothing quite like seeing Team Doman all over Salt Lake as well as St. George. Thanks to the rest of you that have stopped by and sent things too, it helped to make this week pass by faster!
The last good thing that happened yesterday was when our social worker, Julianna, talked to me about the donor family. She can't tell me anything about them, I know a lot of you are interested in that, but she did tell me that at any time I can write them a letter and then they can choose to write back or not. I can initiate the contact, and I will. I was excited to hear this, I've been wanting to know. I will be writing the letter this week. I need to thank this family for saving Abby's life. I want to know more about them and where the heart came from, but only if it's what they want too. I think it's going to be hard to write the letter, there are some things that are hard to put into words, and I'll have to put a lot of thought into it.....but I really want and need to do this. Abby might write a letter too, or maybe we'll do it together. Hopefully today will be our last full day in the hospital for a while and tonight my last night here. Britt was awesome last night and offered to stay here with Abby and I went home and slept in a bed for the first night in 10 nights! Thanks Britt, I feel like a new person today. It's time for the next phase in our journey.
We'll start with the care conference or meeting with the doctors and the transplant team. They told us how well Abby is doing, even her right lung is almost better. The heart is working really well, no problems. They explained again that rejection is not as big of a deal as it sounds. It's going to happen occassionally, and we shouldn't freak out. My kids and I decided that it shouldn't be called "rejection," just...."miscommunication" or a "misunderstanding" between the heart and the body. They talked about what happens next, this is what I liked to hear. Abby will have to keep her oxygen probably for about another month, it's just to help with her pulmonary hypertension. She will pretty much be on house arrest for the next 4-6 weeks. No going to movies, stores, people's houses.....anywhere, except PCMC of course. This will be a tough time for us, we'll just be counting down the days. She just doesn't have an immune system right now, at all, that's why we have to be so careful. I asked about driving to St. George for a couple of days, but we can't do this until the 4-6 week period is up. She still could go into arrythmia and they want to keep a close eye on her. After this time is up, if she doesn't have any problems, she'll be able to do just about anything. We'll be coming up for appointments twice a week, getting biopsies, echos, xrays, and monitoring her meds. The good news is that if all goes as planned without any problems, we'll be back living in St. George and me working by November 1st, which is when my insurance lapses! I can't even believe it, this was a huge relief for me. We'll still have to travel to Salt Lake at least once a month, but that's okay...we can do that! I know I was so worried about all of her meds, but they'll taper off a little at a time. They also talked to me about the financial stuff, and how to deal with it and keep things organized. This was a huge help because I have a stack of bills about as tall as the Empire State Building. I haven't even opened most of them. Good thing we'll have lots of time to take care of this in the next month. Just to let you know how good Abby feels, her questions to them was, "How soon until I can run???" They just told her to let her incision and sternum heal up and then she can do what she feels ready to do! This whole process is mind boggling (Britt, I know you love it when I say this word!) She only got her heart 9 days ago!!! We won't be going home today, but almost certainly tomorrow. They just took her last chest tube out and they have to monitor her for 24 hours after. It's the only thing keeping her here. Britt said she's posting the video of them taking Abby's chest tube out this morning, but if I were you I wouldn't watch. I couldn't, I would have passed out for sure. Right now, the only thing that she is attached to is oxygen. I think back to 9 days ago when she was connected to all of the machines after her transplant, and now they're all gone. How can this not be a miracle? I'm just amazed every day with the things they can do medically...it's awesome. Did you know that the wires that she's had on the outside of her belly were going in through her skin and touching her heart. It was an extermal pacemaker that was put in just in case. Luckily, they didn't have to use it, and they're gone now, but pretty cool that it can be done. What a great meeting.......all good news. I'm so grateful for all of Abby's doctors and her transplant team and the nurses and everyone involved here. They always went out of their way to take perfect care of Abby, we felt very loved and will really miss many of the people here, they're our friends now. In some ways it will be hard to leave here, but it's also a huge relief.
The next really cool thing yesterday was seeing Abby's heart. We are so grateful for Dr. Kaza for setting this up for us and for Meri's friend in the lab, Lance Erickson, for bringing it to us to see. They just carried it in a little tupperware container. When they pulled it out, I was grossed out. I couldn't believe how huge it was. We compared it to Abby's fist, which is how big it was supposed to be, and it was more than double the size, it was even way bigger Brock's fist, almost both of his fists. They opened it up and showed us the inside and how thick the lining was. You can see it in the pictures. Dr. Kaza was so great, he taught us all about how the heart should function and showed us were Abby's was having such a hard time. He told us again that Abby's heart was almost worthless, it wasn't really doing anything. We are just so blessed to have gotten her heart when she did, it was so much sicker than anyone thought. Britt and Brock loved to hold it and really examine it. I held it, but didn't really want too. As long as I didn't think that this was Abby's heart, I was okay. When that thought came to mind, I felt a little queasy. I didn't breathe the whole time I was holding, which was only a second, because it was really stinky! I only had a slight urge to chuck it at the wall, but then they told me how much they can learn by looking at her heart, and I decided I wouldn't ruin it. They asked if they could keep her heart longer than most because of all of the problems, they said it was a great teaching tool. I asked if they could tell anymore about how long her heart had been sick, or if she's had it since birth and it had just gotten worse, or what exactly happened......but they couldn't. We'll never know. Abby absolutely did not want to touch it. I can understand, it's just too weird to be holding your own heart. We just kept saying how cool it was that she got to see her own heart, most people don't get to do that. It was an experience I'll never forget. This sounds weird, but for some reason after seeing the heart, I felt better about the transplant. Maybe, then I knew that she had to have a new heart, up to that point I just had to believe what everyone was telling me. It's hard to explain, but it was good for us to see it!
Paul Cardall came to spend time Abby again yesterday, it was good to see him again because he's always so inspirational. It makes Abby remember what a miracle she is and to always look to the future and be positve. Hopefully we'll maintain this relationship as well as with all of the other "heart" people we've met recently. You just form an instant connection with each other, it's awesome. Thanks to Ali, her sister and her cousin, for their visit yesterday too, it was just what we needed. We learned a lot from it too, just what the Doman family needed. Diane-thanks for lunch and buying so many T-shirts....there's nothing quite like seeing Team Doman all over Salt Lake as well as St. George. Thanks to the rest of you that have stopped by and sent things too, it helped to make this week pass by faster!
The last good thing that happened yesterday was when our social worker, Julianna, talked to me about the donor family. She can't tell me anything about them, I know a lot of you are interested in that, but she did tell me that at any time I can write them a letter and then they can choose to write back or not. I can initiate the contact, and I will. I was excited to hear this, I've been wanting to know. I will be writing the letter this week. I need to thank this family for saving Abby's life. I want to know more about them and where the heart came from, but only if it's what they want too. I think it's going to be hard to write the letter, there are some things that are hard to put into words, and I'll have to put a lot of thought into it.....but I really want and need to do this. Abby might write a letter too, or maybe we'll do it together. Hopefully today will be our last full day in the hospital for a while and tonight my last night here. Britt was awesome last night and offered to stay here with Abby and I went home and slept in a bed for the first night in 10 nights! Thanks Britt, I feel like a new person today. It's time for the next phase in our journey.
Thursday, July 21, 2011
Pictures of Abby's old, sick heart
Hey it's Britt. We got to see Abby's old heart today so here are some pictures.. Don't look at these pictures unless you want to get grossed out!
Wednesday, July 20, 2011
Mild rejection, but it's nothing to worry about (or so they say.....)
Wow, what a day. It just seems like when I get used to what's going on around here, something else is thrown our way! It's hard for me not to worry when I hear anything from the doctors that involve the word "rejection!" They said the biopsy showed that it is just a mild rejection, and we truly shouldn't be worried. We just need to watch it and get another biopsy next week, on Tuesday, and hope that things look better by then. I figure that since they still think we will be able to go home by Friday, it must not be too serious. All of her cath levels looked really good though. We also had a little scare today when we went for a walk and Abby suddenly started feeling pain (she rated it a 6!! she's never said more than a 1.5). At first she said it was her chest tubes, but then she decided it was in her back. They sent all the docs up to check her out and then did another chest xray, her 2nd one of the day. They aren't sure what it was, but it was bad enough for Abby to cry, I've only seen her cry once through all of this, can you believe that?? They said that sometimes you can get a little air pocket that comes in through the chest tubes and it can settle in the back of her shoulders, this was a possibility. We just have to keep watching her and see if it goes away, she does feel much better tonight. Just another thing to worry about. She's still got some troubles with her right lung too, we just can't get it cleaned out and fully expanded.....this means she'll be staying on her oxygen for a little while longer, we're not sure how long.
The most stressful part of the day was when they came and started teaching me about recovery. It was the pharmacy team and they came to teach me about all of Ab's meds and the side effects, and how and when to take them, and how important it is that we follow the instructions so closely. I've had some requests from people asking about what meds she'll be on, so for those of you that are interested, here's the list: Prograff, cellcept, prednisolone - all anti-rejection meds, valcyte-prevents viral infections, nystatin-prevents fungal infections, septra-prevents bacterial infections, aspirin-prevents blood clots, lasix-water pill, Lansoprazole-prevents stomach ulcers, pravastatin-lower cholesterol and stabilizes heart, lisinopril-controls blood pressure, amlodipine besylate-helps lungs and blood pressure, magnesium oxide-nutritional supplement, tums-calcium, and cholecalciferol-promotes bone health. This totals to 43 pills/day and 4 mouth swishes. it's a lot to think about and worry about. There are a lot of possible side effects, and we have to be as exact as possible. They will eventually taper off, but some of them she'll be on for the rest of her life. I think the first time I go to the pharmacy, on Friday, I will probably need a heart transplant when I see how many there are and the bill!!! The cost is just overwhelming, I'm not sure how we'll pay each month, but I just have to believe that it will work out. Just another reason I need to be home and teaching by November 1st, I can't let my insurance lapse. This little meeting gave me a lot to worry about, I will have a huge responsibility and I can't screw it up. Sometimes all of this medical stuff is just so tiring for me, not what I would choose to be thinking about, but I better get used to it.
The good news today was that Brock and my mom and dad are back in town. It will be so good to have all of my kids here for a few days at least. Then Britt and Brock both have to go back to St. George on Monday. I do have a hard time with this part of our whole situation, it never gets easy, and in fact, it's going to get harder once school starts, we'll just have to make the most of the time we do have together. Another cool thing is that Dr. Kaza, our surgeon, came by and told us he's going to take us to the lab and let us see Abby's old, messed-up heart tomorrow!!! Abby is so excited. We will take pics for sure. I will probably get grossed out again, but I'm going to try to look at it, and I promise I won't throw it at the wall too hard!!! One funny thing, when we gave him a Team Doman shirt, he said the cooler that actually carried Abby's new heart, looked just like the one on the shirt, it was even red!!! He thought that was pretty cool. We're also having a "care meeting" tomorrow with all of Abby's doctors. We will learn more about how she is doing and what we do from here. Maybe we will get a rough timeline of what happens next. The other good part of today was Abby's channel 2 news story, I thought she did great and they did an excellent job putting the story together. I was going to link it to the blog but I couldn't find in on the 2 news website, so if any of you know where it is, please add a link to your comment, I will keep looking too. Also, if any of you saved the articles from the Spectrum last week, we would love a copy, we only got a copy of the first day.
I know it sounds like I'm complaining, and I know I shouldn't be.....I should just be grateful, and I am..... we have so much to be thankful for, but sometimes things are still hard. Most of the time we are just content to be where we are right now, we know how easy we've had it through all of this, things have just worked out perfectly for us and we don't forget this, ever....it's too awesome to forget; But, we still have lots of things to worry about too. Right now it just feels like we'll always have a hurdle to cross, there will always be something else to worry about, so I just better accept this and make it my new normal.
The most stressful part of the day was when they came and started teaching me about recovery. It was the pharmacy team and they came to teach me about all of Ab's meds and the side effects, and how and when to take them, and how important it is that we follow the instructions so closely. I've had some requests from people asking about what meds she'll be on, so for those of you that are interested, here's the list: Prograff, cellcept, prednisolone - all anti-rejection meds, valcyte-prevents viral infections, nystatin-prevents fungal infections, septra-prevents bacterial infections, aspirin-prevents blood clots, lasix-water pill, Lansoprazole-prevents stomach ulcers, pravastatin-lower cholesterol and stabilizes heart, lisinopril-controls blood pressure, amlodipine besylate-helps lungs and blood pressure, magnesium oxide-nutritional supplement, tums-calcium, and cholecalciferol-promotes bone health. This totals to 43 pills/day and 4 mouth swishes. it's a lot to think about and worry about. There are a lot of possible side effects, and we have to be as exact as possible. They will eventually taper off, but some of them she'll be on for the rest of her life. I think the first time I go to the pharmacy, on Friday, I will probably need a heart transplant when I see how many there are and the bill!!! The cost is just overwhelming, I'm not sure how we'll pay each month, but I just have to believe that it will work out. Just another reason I need to be home and teaching by November 1st, I can't let my insurance lapse. This little meeting gave me a lot to worry about, I will have a huge responsibility and I can't screw it up. Sometimes all of this medical stuff is just so tiring for me, not what I would choose to be thinking about, but I better get used to it.
The good news today was that Brock and my mom and dad are back in town. It will be so good to have all of my kids here for a few days at least. Then Britt and Brock both have to go back to St. George on Monday. I do have a hard time with this part of our whole situation, it never gets easy, and in fact, it's going to get harder once school starts, we'll just have to make the most of the time we do have together. Another cool thing is that Dr. Kaza, our surgeon, came by and told us he's going to take us to the lab and let us see Abby's old, messed-up heart tomorrow!!! Abby is so excited. We will take pics for sure. I will probably get grossed out again, but I'm going to try to look at it, and I promise I won't throw it at the wall too hard!!! One funny thing, when we gave him a Team Doman shirt, he said the cooler that actually carried Abby's new heart, looked just like the one on the shirt, it was even red!!! He thought that was pretty cool. We're also having a "care meeting" tomorrow with all of Abby's doctors. We will learn more about how she is doing and what we do from here. Maybe we will get a rough timeline of what happens next. The other good part of today was Abby's channel 2 news story, I thought she did great and they did an excellent job putting the story together. I was going to link it to the blog but I couldn't find in on the 2 news website, so if any of you know where it is, please add a link to your comment, I will keep looking too. Also, if any of you saved the articles from the Spectrum last week, we would love a copy, we only got a copy of the first day.
I know it sounds like I'm complaining, and I know I shouldn't be.....I should just be grateful, and I am..... we have so much to be thankful for, but sometimes things are still hard. Most of the time we are just content to be where we are right now, we know how easy we've had it through all of this, things have just worked out perfectly for us and we don't forget this, ever....it's too awesome to forget; But, we still have lots of things to worry about too. Right now it just feels like we'll always have a hurdle to cross, there will always be something else to worry about, so I just better accept this and make it my new normal.
Pics
Here are some pictures!
Getting her hair washed!
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