Wednesday, October 31, 2012

Halloween??? Psshhhttttt.......Whatever!

     I wish I had all the answers tonight, I wish that they would have figured everything out today and that we were treating it and that we were going home tomorrow; But, unfortunately, that's not the case.

     It has been a very long day though, we are both wiped out!  It all started at 4:00 this morning when Abby's blood pressure was 140/102 and she had a massive headache.  They decided to to take her blood pressure every half hour instead of every 4 hours, so our time for sleeping was done.  At one point her blood pressure was 152/105!!  So, for now, we are blaming it on the steroids and treating it with an increase in her blood pressure medication. One thing we still haven't figured out is why her pulse was so low all day yesterday and last night.  It was down in the low 70 all through the night, which is just weird for Abby.  Today, it's been back in the 120's, back to her normal.  Who knows??? Now I remember why they like to call Abby "The Conundrum!"  After spending time with the residents this morning, they sent in the psychiatric team to help Abby cope with having to have another hospital stay.  Honestly, I think she's handling things really well.  But, being back in here can really wear on some kids and bring back some tough memories, so they want to offer this service while we are here.  It was really hard to take a guy too seriously that was dressed like the funky monkey, but I do think it was good for Abby to talk to someone.

     Abby's next visit was with the GI team.  She's had an upset stomach and zero appetite for a few weeks now, and it sounded a little like her eosinophilic colitis could be flaring up again.  The GI team is great, they spent lots of time with Abby trying to determine what's going on and what needs to be done.  They also are still trying to figure out what's causing her back pain, that never really went away.  They've got a few ideas, it's just hard to determine which one is the right one.  They're starting with a cleanse, which she's been doing tonight.  The poor thing, while every other kid is out chomping down candy, Abby has to drink fourteen 8-ounce boxes of Gatorade with a scoop of Miralax in each one.  One Gatorade every 15 minutes and she's been doing it since 6:00, it's now 8:45, she's getting close to being done but she feels awful.  Her stomach is all bloated and she's spending the majority of the time in the bathroom, she's not very happy.  But, the amazing thing about Abby is that she hasn't even complained once, not once, all day long.  She just does what she's supposed to do with a smile on her face.  The nurses really do fight over who gets to take care of her each shift!  The GI team also wants to look into some of her medications to see if this is maybe the cause of her stomach issues, and they also want to check for Celiac Disease and a dairy allergy.  They want to start with the least invasive measures first, which is exactly what I want to do too!  They'll be stopping by again tomorrow to talk to us about what our next step is.

     After the GI team we got to talk to the transplant team and Dr. Everitt.  So far, Abby's labs that have come back have come back negative.  Some of her results are still pending.  Her blood counts are still low, but are slowly beginning to rise.  She's still not responding to the steroids like Dr. E would like her to, so she's staying with the megadose for 5 more days, then hopefully starting to taper.  Abby isn't thrilled with this, in fact, it makes her really sad.  She really doesn't want her big cheeks.   The transplant doctors are looking into a few other things that could be going on as well.  The 3 big things they check for with transplant kids are rejection, which we know she's in, infection, which her white blood counts show could be possible, and cancer because her immune system is so low.  Last May, when she was also having problems, they had talked about a possible auto-immune disorder and they're going to be running some more tests for that tomorrow as well.  Today, for the first time ever, I got discouraged with the transplant team.  I just told Dr. E that I felt like I didn't know what was going on and that I felt like they weren't being completely straight with me.  I don't like not having a plan, and that's how I've felt here the last couple of days.  After we had a good chat and I let her know exactly how I felt, I decided that maybe she's discouraged as well.  Abby is just such a unique case, she's extremely hard to diagnose and I think that's frustrating for the doctors too.  I do know that there's something going on, whether it's just a virus that she's having a hard time kicking because of her immune-suppresants and the steroids she's on for her rejection, or something more serious, there's something.  It might be that we stay here and she's monitored for a few days and then sent home without any answers, but that's okay because we've already found some things that needed to be treated.  One good thing that came out of the discussion I had with Dr. E. is that Abby has to have another biopsy next week to make sure the rejection is gone, and we were able to schedule it next Friday, the same day that Brock will be playing football at Rice Eccles for the state semi-final football game (if they win on Friday anyway, which they will!)  So, at least I won't have to make an extra trip back up here.  Abby can have her biopsy and I can watch Brock play both on the same day.  I also won't have to waste another sick day at school because they excuse all teachers that have kids playing in state playoff games so that they are able to watch their kids play.  That was good news.  I'm not thrilled about doing another biopsy, but I know that it needs to be done.

     For now, Abby is feeling about the same.  I don't think she any better, but not any worse either, than the day we go here.  Which I guess was only yesterday, it just seems longer.  Brittany and Brock are home alone and Brock has had the stomach flu all week and has been home from school throwing up.  I wish I was there to take care of him, but then again, I don't "do" throw up very well, so maybe it's a good thing we're here.  Hopefully, he'll be better by the big game on Friday.  Britt texted me today and said that she threw up today too, so maybe it's a good thing that Abby is up here away from whatever it is they have.  I feel like a crappy mom because I'm not there to help them, but what can you do?  I also feel bad about missing school again and leaving my team to cover for me.  I'm sure they're sick of it, I know I would be.  I know I need to be here with Abby, but I also have responsibilities to Britt and Brock and at school and when I can't do everything, it makes me feel inadequate.  It's hard for me not to be able to be everywhere that I need to be.  There were a lot of fun things going on around here today for Halloween, but Abby just wasn't up for it, she just didn't feel good, so we just hung out, mostly visiting with doctors and nurses.  It was really great this morning when Dr. Kaza came by to see Abby.  We always like to talk to him, he is amazing and he will always be a hero in our eyes.  He has a little soft spot for Abby and always has.

     Despite all of the crap that Abby is going through, she's doing a good job keeping her spirits up and being positive and happy.   I need to try to learn from her because I spent most of my day being discouraged and frustrated.  I just want to know what's going on, to fix it, and to go home.  Hopefully, tomorrow will be the day we get answers or we decide to forget it, and they just send us home to get over it on her own.  Thanks for all of your thoughts, prayers, messages, good vibes, phone calls, etc.  They sustain us.

Abby during her cleanse, she couldn't get warm!!!  It was all of that cold Gatorade I guess.

Abby when she found out about the 8 ounces of Gatorade with Miralax every 15 minutes for 3 hours!!!

The IV team, don't they look great??

Tuesday, October 30, 2012

After a 6-month break, we're back at PCMC....

     I can't believe we're back here at PCMC! My blue couch/bed  just doesn't look too inviting!  They tried to put us back in our old room, but there was another kid in it and they refused to kick the kid out for us, rude, I know.  It feels weird to be in a different pod, but there's a chance they'll move us back to our regular room tomorrow.  Here's a funny thing.........the last time Abby was in rejection was last year, exactly last year, we had clinic on Halloween and found out she was in rejection later that day.  She wasn't happy, in fact, she spent most of Halloween crying because she was going back on steroids.  This is not going to be a yearly occurrence, this annual event is going to end after this year.  I have to admit that I hate dressing up for Halloween, but, it beats sitting up here in the hospital.  Everyone keeps telling us that it will be fun to be here tomorrow, it really stinks that Abby's new costume is sitting at home still in the package.  Maybe she can be a pirate next year.  Last year on Halloween, Buzz Lightyear did her lab draw, they'll have to surprise us this year!

     So, why are we here?  After Abby's biopsy last week, when they discovered she was in rejection and started her on a pulse of steroids, she started feeling worse, not better.  It seemed like each day Abby's energy level went in the wrong direction.  We were already supposed to take labs on Monday morning, so I called the transplant team and just let them know that it seemed like Abby was getting sicker, not better.  They called me when they got Abby's labs and said that there was no change in her blood counts, and they were concerned about her feeling worse, so they sent us to Dixie Regional to get an echo and a EKG.  The echo results showed no change either, it should've showed some improvement since she'd been on the steroids.  So, this, plus the labs, plus the way Abby was feeling was enough to worry the doctors, they decided they wanted to see her again.  So, yesterday, after only 4 days at home, we hopped in the car and drove up again.  I've got to tell you, I'm getting tired.  Between teaching and driving and clinic and caths and Britt's Lasik, and football games, etc.  I'm getting tired.  I feel like I haven't had a chance to recover since last Sunday when I spent the night staying awake with Abby while she was throwing up.  This is what we look like now, after all of our traveling and clinic days:

Hahaha, we've got too much down time while we're waiting for the docs, we keep discovering these great apps!

    After seeing the doctors today, and reviewing things from the past week, Dr. E. decided she wanted to admit Abby and get a better look at some things.  She just didn't feel like things are adding up like they should be, they look a little fishy to her.  I completely trust everything the doctors here do, if they told me that Abby needs to hang upside down every day, I would ask them when, and we would do it. My instinct is telling me it's just a virus on top of her rejection, and that after a couple of days they'll send us home and she'll be back to normal.  But, I think I'll trust the doctors more than my instinct.  Today, they took a whole bunch of labs again.  I know they're testing for CMV and EBV again as well as Parvo.  They're also checking her blood counts again and then a bunch of other things that I hadn't heard of.  The plan tomorrow is for Abby to have visits from a bunch of teams, the only one I know for sure that is coming is the GI team, maybe all this has something to do with her eosinophilic colitis again.  I think the psychiatric team might stop by again too, being back up here in the hospital isn't easy for Abby, especially when things had been good for the last 5 months.  We had kind of forgotten that life after a heart transplant is hard and won't always be a smooth ride.  She misses school and friends now more than ever, it had become the "normal" again so it's hard to be away from it again.  Last year, no school was the "normal," it wasn't as hard.  A couple of things that we've already discovered after spending the day here is that Abby's blood pressure is very high right now, is hovering right around 140/90.  This could possible be from the steroids, but maybe not, it is probably why she's been having headaches.  Her pulse has been hanging right around 85.  This sounds like a normal pulse rate for you and me, but Abby's hasn't been below 110 since her transplant.  When we take it every morning and night, it's usually between 115 and 125.  This is weird, so the doctors are looking into that too.  Just too many things going on that shouldn't be.  Hopefully, they'll get some answers.

     When the transplant team told us they wanted to admit Abby, I said that was okay, but that I needed to be home by Friday at 5:00 because that's when Brock's big quarterfinal football game is.  I don't think any patient has given Dr. E. a deadline before, but it just made her laugh and she said she'd do everything she could to get things figured out by then.  I'm proud to say that I in the last 2 years, even with everything that's been going on, I haven't even missed one of Brock's football games, and I don't plan on missing one either.  Hopefully we can get a diagnosis and get it treated quickly, I need to be home.  Britt and Brock probably feel like orphans the past couple of weeks, it seems like we've been up here a lot!  If you see them, please just make sure they're okay, I hate it when they're not here with us!  I just have to keep remembering that it's only going to be for a few days (hopefully anyway), not like last year at all!

     Some good news is that after some intense arguing and complaining and even maybe a few tears, I convinced our insurance company to pay for her $3,700/month medication!!!  They couldn't tell me how long they will cover it, but at we'll just go month by month for now.  I was happy to at least get a short-term commitment.  The bad news is that because of how Abby's doing, she's still on a mega-dose of steroids, they haven't started the taper yet.  The longer she's on them, the better chance she has of having the side effects, like the pudgy cheeks, acne, etc.  The things that are a nightmare for every 13-year-old.  Abby is not happy about this at all!  Plus, they've also put her back on a couple of her other medications as well.  It seems like we're going in the wrong direction.  We just need to get past this and move on.

     The most shocking news today came when our social worker, Juliana, came by to visit.  She told us that Abby's donor family has decided that they want to meet us!  We have sent letters to them a few times, but have never heard anything back, so this news was very surprising, it was not what I expected to hear today.  I told Julian that we would love to meet them, but that we need to get some background information first, and maybe communicate through writing for a while too. I can't even explain all of the emotion that this brings up, and I don't think you can understand unless you're in this situation. This now isn't so abstract, it's real.  We will now attach Abby's new heart to a real person that had a family and a life and that's hard.  The feelings of guilt try to creep in again too.  It made me feel anxious to think about actually meeting them, but so grateful too.  When they see and meet Abby, and they know that they saved her life, I think they will feel a sense of peace and hopefully, some joy.  I can't wait to be able to thank them, in person, for the decision they made.  So many emotions, it's just a hard thing to process, it actually made me cry and I haven't even met them yet!  This is just a hard thing, it's hard to put into words and it's probably hard for most people to understand, but it's just hard.  I'm glad I have a little while to process this, and Abby too.  I'm glad the psychiatric team is coming to talk to her because that's a lot for a kid to think about, for anyone to think about.  Just too much to figure out on your own.

     Just a few weeks ago, Brittany had me watch this episode of E:60, a show that's on ESPN about this boxer named Paco Rodriguez that died while boxing.  His family made the decision to donate his organs and he was able to save 4 people's lives.  It then went on to show the meeting between Paco's family and his heart recipient.  It's amazing, and if you have anything to do with organ donation, or even if you don't, it will probably make you cry. Here's the link, it's 17 minutes long, but it's worth watching. 

Tomorrow is going to be a big day, lots of doctors, lots of tests, and hopefully lots of answers!!!

Thursday, October 25, 2012

I hate it when we hear the "R" word!

     It's all my fault, I take full responsibility.  I couldn't help it, I had to brag.  Abby had only missed a few days of school the whole first quarter, and I had only missed a couple!  Things were so good, we were smooth sailing!  I kept hearing and then repeating that now that we had made it through the first year things were going to be easy!  I shouldn't have started boasting about our success, I should have just kept my mouth shut because I jinxed us.
     A couple of weeks ago, Abby came home from school and told me that whenever she would sing in her choir class, she would have a hard time holding the notes, she said she would run out of air too soon.  I didn't know what to think.  I had also noticed that when she'd come in from jumping on the trampoline she would be breathing way harder than usual as well.
     Here's the problem.  There have been many times this past year when Abby hasn't felt great or has been extra fatigued.  It's extremely hard to know what to do, should I call the transplant team or not?  I hate to be too hyper-sensitive, but I don't want to miss anything either.  It seems like we have worried about things before that have turned out to be nothing, like when she had her lower back pains the past couple of months.  We tested for everything, but found nothing.  Her back still hurts, but we've decided she will just have to live with it.  I usually just don't do anything for a couple of days except just watch her more closely.
     Abby starting sleeping a lot more, she just didn't seem okay. She was also getting sore throats, headaches, sores in her mouth, and her pulse was a little higher than her norm. After being up with her all night Sunday night while she was throwing up,  I decided it was time to call the transplant team.  After hearing her symptoms, they decided they wanted to see us the next day.  So, after school we loaded the car and went to Salt Lake!  The whole time we're at clinic, and until we get all the results, It's like playing a guessing game.  What do you think is going on?  What are they going to say?  What are the lab results going to be?  I had decided, with all of my medical expertise :)  that Abby had a virus, probably CMV like she had last April,  She was acting exactly the same. First thing was her echo.  I've been wanting to see the echo of Abby's old heart, and finally, this week we were able to.  After Abby had her echo, they took us out to the computers and pulled up her very first echo that she got when we got to Dixie Regional on May 18th-I didn't even know they did an echo there that day, then right next to it they pulled up the echo that she just had done.  The difference was incredible, it was so cool to see.  Abby's heart was so sick, so incredibly sick, and now it's so strong, it's just awesome.  After her echo we went to meet with the transplant team.  Abby's lab results came back showing that she a low white blood count, her neutrophils were also low again.  Last time they were low, she had to get neupogen injections, and they were extremely painful, they made her bones ache.  Her levels were borderline needing neupogen again. If they drop anymore, we're back to injections, yuck, Abby doesn't like that at all.  We had to wait until the next day to get her CMV and EBV results.  Then they looked at her BNP which shows her cardiac function.  If you're in heart failure, your BNP is over 100.  When Abby first arrived at PCMC, I think I remember them telling me that her BNP was 1,200-severe heart failure.  Tuesday, at clinic, Abby's BNP was only 15!!!  That's probably better than the majority of people reading this post. She's got a dang good, strong heart beating in there!  Thank you donor!!   Then the bad news.  The doctors noticed a little thickening in her right atria-this can sometimes show rejection.  Her prograff level, which lets us know that she's taking the correct amount of anti-rejection meds to prevent rejection, came back extremely low as well, not good.  Because of these things and the way Abby was feeling, the doctors decided they wanted to a cath/biopsy to rule out rejection.....That was the thing we were not expecting.  We didn't think Abby would need another cath until her annual in May, but things were looking too fishy, so they scheduled the biopsy for the next day.  Yuck, another day in cold Salt Lake and another day that I had to get a substitute to cover my classes.
     Abby went into the cath lab the next morning.  Because of the events of the past couple of weeks with our sweet little heart friend Mia, I was extremely nervous, the last place I wanted her to go was the cath lab.  I think Abby was scared as well.    I had never been scared sending her back before, not once, but I did not want her in there yesterday.  I will admit that I had a little meltdown after dropping her off.  My rational brain was telling me that Abby had done this so many times before and that she hadn't ever had a problem, ever!  I knew that Dr. Day would take complete care of her.  I knew that if something did happen, we were at a place that was ready and equipped to help her, I knew all of that; But, unfortunately, that wasn't enough to make it easier.  I kept it together perfectly until I found my seat in the waiting room.  Even then, I was okay, until Dr. Molina came by and asked me how I was doing and if I was okay.  Poor Dr. Molina, I bet she was a little shocked when the tears started flowing!  After that, each member of the transplant team came and sat with me, and talked to me, and reassured me, and went to get updates in the cath lab, and listened to me.   They even called one of our social workers down to be there with me too.  I sure do love our transplant team, they were perfect.  Finally, after about  90 of the longest minutes of my life later,  she was done.  The cath pressures looked great!  I was certain that she wasn't in rejection.  The transplant team sent us home knowing that they'd call us with the biopsy results later that day.  We got the call just as we got to Cedar City, Abby Abby was in rejection.  Cellular Rejection is measured on a scale from C1-C5, C5 being severe.  Abby is C3, she's never been above C2 before.....not good.  They are treating the rejection with an overkill of steroids for the next five days, hopefully, this will make her immune system so weak that it won't attack her heart anymore.  When Abby heard this news she just started bawling, steroids for a 13-year-old girl is the very worst!  She's afraid she's going to get the puffy cheeks and gain weight again.  I don't think she will, we'll just have to see.  She's pretty upset about it now, lots of tears.  So, on top of whatever virus she has, she's also in rejection.  Monday, we'll do another lab draw to check her blood counts, and the following Monday we go back to clinic to see how things are going.  Unfortunately, at some point soon, she'll have to have another biopsy to make sure the steroids are doing their job.  Abby can go to school now, but she has to be so careful and stay away from germs as much as possible.  She's so susceptible to getting sicker right now.  Wow, we were shocked, we were not ready for the "R" word, it hadn't even crossed my mind.  But, it's okay, we can't complain, we've gone almost 5 months without anything serious, we were almost like "normal" people for almost 5 months and that's good.
     You know when things aren't going so great and then it just seems like the bad news keeps coming?  That's what happened to me today.  Today I was mad and discouraged and frustrated!!!  I had to go to the pharmacy to pick up some of Abby's meds, the ones that I can't get through the other 2 companies I have to order Abby's meds through.  When I got there, they told me that my insurance had "decided" that as of October 23rd, they no longer are going to cover one of Abby's meds called Valcyte.  This is a med that Abby has to have because it prevents CMV.  It's critical she's taking it now more than ever because of her low blood counts and her steroid use, the last thing we need is for her to get CMV again, it was awful.  This medication is not optional.  Here's the real kicker.......the cost of Valcyte for me now since my insurance won't cover it is...........are you ready????  $3,700 per month!!!!  That's right, $3,700 per month!!!  What the heck??  How is anyone supposed to pay that much money for a medication?  I'm not sure what I'm supposed to do.  I guess tomorrow I get to spend some time either trying to find a way to make my insurance company cover Valcyte, or finding a job that will pay me an extra $3,700 every month!  Ugh......sometimes being the mom of a heart transplant recipient is hard and exhausting.
     Let's end this post with some good things.  First, Britt's been saving her money forever so that she could get Lasik surgery, she's the perfect candidate, and she got to have her surgery today!  I'm so glad that we got to come home so that I could be there with her.  She said the surgery hurt, a lot, but I know that when she can see in a couple of weeks without her glasses and contacts it will all be worth it.  Tonight, she's sitting on the couch listening to the TV because she's not allowed to open her eyes.  She's feeling better already!  The next good news is that Brock's football team won region last week and they get to start the playoff games tomorrow.  Hopefully in 4 weeks they will be state champions!  Brock is playing great, he's so fun to watch!  Brock and Abby got excellent grades first quarter and so far Britt has straight A's her first semester of college!  I'm so proud of all 3 of them, they work hard and I'm lucky that they make school a priority.  As of today, I'm finally down 25 pounds!  Not bad for a stressed out, old woman like me!  I've got a long way to go to lose the rest of the weight I gained this past year, but at least I'm on the right track.  So, even though we're going through some tough things right now, we still have a lot to be grateful for.
    One more thing-For all of the people that have been trying to convince me to move to Salt Lake because it would be so much easier for me and so we could spend more time together-When we left Salt Lake yesterday, it was 37 degrees and rain/snowing.  When we pulled into St. George it was 70 degrees with clear blue skies.  This is one thing that is keeping me in St. George.  But, talk to me about it again next summer when it's 110 degrees and I can't stop sweating!  We'll just have to keep making trips up there and planning dinners and get-togethers so I don't miss you all too much!

Abby in recovery after her biopsy.  She was freezing cold, that's why there are blankets on her head.  She always requests lots of heated blankets.  In fact, for Christmas she's asked for a blanket heater!

Abby right before her cath, smiling as usual!  How can you not love that kid?

Britt getting ready to head into her surgery.  She's looking good in her bonnet!

Britt sporting her racquetball goggles.  She only has to wear them at nights for a week, but I think she should wear them during the day too just because they look so good.

Monday, October 15, 2012

Not an easy day, but I love my heart mom friends!

I felt honored to be able to attend Mia's funeral in Midway last Saturday.  It wasn't an easy day, but it was something that I felt like I needed to do and when I was able to see Mimi and give her a hug and talk to her, I knew I made the right decision.  The funeral was sad, but beautiful.  Listening to Paul Cardall play the piano was a true blessing and brought me right back to our first stay at PCMC. Abby felt like she needed to attend the funeral too, and I was proud of her for that, it took a lot of courage for her to be there.  I hope that the words Abby said to Mimi comforted her in some way.  Being able to sit in the chapel with 30 other heart mom's was incredible.  I'm still amazed at how powerful the love and support in this group really is.  I know that no matter what we still have to go through in this heart journey, that we will never be alone.  It brought tears to my eyes when all of the heart moms were asked to stand, and in Mimi's words, we were called a "sorority of sisters hand picked by our Heavenly Father."  I love my heart mama friends and I knew that I just needed to be with them last week, even if it was only for one day.  Being with them gives me strength and comfort.  Talking to the other transplant moms was also something that I needed to do.  They helped me understand, as much as we can anyway, what happened to Mia.  They also helped me put things back into perspective.  It was a hard, emotionally draining day, but I'm so glad I was there, it was right where I needed to be.

Abby and Paul.  I love to talk to Paul because he has such a positive outlook.  I always leave my conversations with him feeling so hopeful!

My heart friends-Oh how I love these ladies (and Paul)!  Finally, last weekend I got to meet some of them face-to-face for the first time.   

Just one more picture of all of us.  Each of these ladies (and Paul) has a story to tell.  They've all been through so much and are so strong because of it.

Sunday, October 7, 2012

We love you Mia!

This is sweet, little Mia.  When I wrote about Mia in my last blog post, we were praying for a miracle.  Sadly, the neurologist determined that Mia went without oxygen for too long and that she didn't have any brain activity.  Today, Mia's family is forced to do the unthinkable, and take her off of life support.  Her brothers and sister, although they don't understand, have to say goodbye to their sister.  We know that it is only temporary, that they will be reunited again, but I'm sure that at this time, it doesn't make it any easier to say goodbye.  The thought of my sweet friend Mimi kissing Mia's face for the last time is heart wrenching and unbearable.  It breaks my heart that they have deal with this so many miles away from home in a hospital that they're not familiar with and doctors that they don't even know, that just makes it even harder.  My thoughts and prayers as well as the prayers of so many other have been with the McDonald family all week, I hope that somehow they can feel that love and support even though they are so far away.

Watching Mia this week has reminded me how fragile Abby's life is and that we cannot take any day for granted.  It's such a tricky thing to balance.  Although I know we need to be careful and to keep Abby away from germs and keep her safe, I also want her to be able to live and experience as much as she possibly can while she can, I want her to lead as normal of a life as possible. Seeing Mia go from healthy and happy one day to critically sick the next has scared me.  Even though I've always known that a heart transplant doesn't "fix" the problem, and that it isn't a cure, I never thought that things could change so quickly.  It's just made me step back, take a deep breath, and remember to be grateful for each and every day that Abby is here with us.

It's been a very emotional few days filled with many tears.  Abby has been extremely sad for her heart friend.  Unfortunately, now that we know so many kids that are living with a congenital heart defect or that have had transplants, this probably isn't going to be the only time we lose someone we know, but this is the first time and it's not easy.  Abby is smart and she is strong, she knows and understands what her new life involves and the challenges she might have to face, it's not a secret.  Abby is also lucky, she know and has seen firsthand where little Mia is today, she knows that she is in a place filled with beauty and peace.

"We were walking through a patch of amazing colors, Christ and me, the closest to it on earth is flowers, and the flowers were about up to my belly button and Jesus and I were walking in white gowns, they were really white, you can't even imagine the color.  Christ also had a purple sash going across his chest. We were holding hands. There was no one else around and nothing else there, it was like we were on a hill. His hands were scarred but they were soft, his face was so soothing and calming. But it looked younger than the pictures we usually see, and His hair wasn’t as long. His voice was like honey and he was asking me if I wanted to stay here with Him or go back to earth and be with my family.  I looked around me, no one was there, just me and Him and the sky was this blue color and there were no clouds, it was really bright.  There were colors that I can’t explain, we don’t have them here.  It took me a long time to decide to stay or go, it was a very difficult decision.  It was very peaceful and happy where we were, very inviting."  Abby Doman

We love you Mia!

Thursday, October 4, 2012

Living in the Heart World

Last May 18th, I was introduced into a world that I didn't even know existed, it's a world that I like to call the Heart World.  Before Abby's collapse I had no idea that were so many families that were living in this world.  It's not an easy world to live in, there are many ups and downs, and sometimes things can change from day to day.  We're a tight-knit group, when a heart kid has a problem, the heart world moms rally for each other, they do whatever is necessary to help each other get through the problem.  Every heart parent needs to be a part of this little community.  The support is incredible, and the friendships that are made are everlasting.  But, the only drawback is that because we are so close, when on of our heart friends isn't doing well, it's as if it's one of your own.  Because of your own personal experience, you feel what the parents feel, you just become deeply invested.  The past few months in the heart world have been an emotional roller coaster.  So many downs, extreme downs, but also many ups.  I want/need to write about a few of the kids that we've been watching so closely the past couple of months.  Their stories, and watching how their parents cope with things have taught me so many things.

Kaidence received her first transplant when she was just a baby.  Last year, out of nowhere, only 4 years after her first transplant, they found out that she was suffering from coronary artery disease and that she was going to have to be re-listed.  I was at Primary Children's with Abby the day they found out.  I'm grateful that I was there for Kaidence's mom that day, the news was devastating.  In August, after being on the transplant list for 292 days, Kaidence received her second heart.  Although there are still minor problems now, she is doing well at this time.

Matthew, another 4-year-old, also suffered from coronary artery disease and only a year and half  after his first transplant, he was re-listed.   A few weeks ago, Matthew had a heart attack while waiting for his heart.  He was immediately transferred to the CICU where he suffered more heart attacks. He was just barely holding on.  After 239 days on the transplant, 164 of those living at Primary Children's, and when Matthew was in dire need of a new heart, the offer came.  The timing couldn't have been more miraculous.  He had his transplant the end of September and is still in the CICU recovering now.  There have been quite a few complications, one of those being that he extubated himself, which just isn't good for a 4-year-old to do :) but he continues to get stronger every day.  I can't wait until he can go home, that family hasn't been together for far too long, 164 days is a really, really long time!

Kylie is still waiting for her transplant at Primary Children's right now.  Both Kylie and her mom have been living there for over 100 days now.  She's a very sick little girl and has spent many nights in Intensive Care.  This will be Kylie's first transplant.  She was so sick last week that they had to remove her from the transplant list for a few days while she recovered from an infection.  Thankfully, she's back on the list now.  Kylie needs her heart ASAP, she's running out of time.

The last heart friend I want to write about is Mia.  Mia is also 4-years-old, and had her transplant when she was a baby.  Yesterday, even thought Mia wasn't feeling 100% ,  her family left for Florida for her Make-a-Wish vacation.  They were so excited for this trip and had been waiting so long for this opportunity.  I don't have all of the details, but by the time they got to Florida, Mia was feeling sick enough that they decided to go to the hospital.  At first, they thought she had pneumonia, but after doing an echo, they determined that she was in rejection and that her heart function was only at 40%.  They immediately admitted her to the ICU and she went in for a heart cath last night.  During her cath, something went horribly wrong, and Mia is now on bypass (ECMO) fighting for her life.  I just can't imagine the anguish her family is going through right now,  and to be so far away from home and family and the doctors they love and trust, makes it even worse.  In a few hours they will transfer Mia to transplant center in Tampa.  Thankfully, they have family flying there now to help with the other kids so mom and dad can focus on Mia.  From what I've learned about ECMO, she can be on bypass for about 6 days. Hopefully, this will give her heart enough time to rest and to heal.  Things are still unclear at this time, we don't know everything, but we do know that Mia needs lots of prayers.  Things are extremely critical at this time.

Living in this heart world is scary.  It scares me that things can change so drastically in just one day, sometimes, just one hour.  Abby knows what's been happening with all of these heart friends, and it scares her too, you just never know.  One thing I do know is that heart moms are the strongest women out there, I've learned so much from watching the other moms in our our heart group, they are all such an example to me.  The other I know is that heart kids are fighters, they have a determined will to survive and they overcome things that nobody thinks they can.  The night Matthew was offered a heart, I realized something great, something that I needed to figure out.  I've always had such a hard time trying to understand why these things have to happen.  Why do we need to have kids that need heart transplants?  Why should these kids and their families have to suffer? No matter how hard you try, it's impossible to make sense of these things, but maybe we're not supposed to make sense of them.  Maybe, the bad things have to happen so that we are reminded and can recognize that miracles can and do happen.  I think about how many people were invested in Matthew's story.  There were so many people following him and praying for him, and investing their thoughts and energy in him.  Each one of them were able to be a part of that miracle.  It was the same thing when Abby got "the call."  There were people praying for her and following her story all over the world (literally!).  The day Abby received her transplant, they all got be part of something great, something miraculous.  Maybe we need the struggles and the heartaches so that we can recognize when a miracle takes place and so that we will continue to live for that hope. Little Mia and her family needs our prayers.  I'm sure they are in shock right now.  They were planning on spending the day as a family in Disney World, and instead they are watching Mia fight for her life in a hospital that they aren't familiar with.  Like I said, being in this heart world can be the greatest thing, but it can be the hardest thing too.