H is for Heart Transplant: What a different three years can make...

This was Bean three years ago this month.  Its tough to look at that picture.  At that point, Easter 2009, we were still in the hospital in Sacramento and they weren't quite sure what was going on - just that her heart was five times the size it should be and she was not responding well to the IV meds they had her put her on.  We spent that Easter in that hospital room.  I still have a coffee cup and stuffed bunny they brought around for all the parents and kids in the ICU.  That week was probably one of the hardest of my life.  Everything was so unclear and it just didn't seem like anyone could tell us exactly what to expect.

This was Bean yesterday - Easter 2012.  What a difference three years and a heart transplant makes! Bean got her new heart about three months after the above picture was taken.  We are forever thankful for the family that saw past their own grief to donate their babies heart to our baby.  We have not heard back from the donor family and we may never hear back from them, but hopefully they took some solace in knowing that they saved a life...perhaps many lives (if the other organs found homes in other babies).

But, I thought some of you might be interested in our learning more about heart transplants.  So, that is the subject of the rest of this post.

A heart transplant is an open heart surgery where a diseased heart is removed and a healthy heart from a donor is sewn into place.  Heart transplantation is only about 50 years old, with the first one being performed in 1967.  The process has come a long way since then, and according to Wikipedia about 3500 heart transplants are performed annually worldwide in 2007.  Infant heart transplants are more rare and more recent.  According to the Loma Linda University website, where the first infant transplant was performed, the first infant heart transplant of a human heart was in 1985.  According to Medscape Reference 350-400 pediatric heart transplants (in children 18 or younger) are performed annually, so only about 10% of the total heart transplants done each year are in children under 18, let alone infants.  Because of the relative recency of heart transplantation in infants, the statistics on survival, complications, etc. is limited.  But, the survival rates for younger recipients seem to be better than older recipients, which maybe a reflection of their ability to adjust their immune response system better.

Bean received her heart at Lucille Packard Children's Hospital and according to their heart transplant page they lead the nation in survival rates for one- and five-year outcomes and they have the largest group of child recipients who have survived longer than 25 years with a heart transplant!  Pretty good statistics.

Bean is currently on a drug regimen that requires us to administer a number of medications every morning and every evening.  She started out post-transplant on about 13 medications, but has been weaned off of all but five of them!  She will probably be on these five for the rest of her life.  She takes two immuno-suppressants, one blood pressure medicine, one anti-statin (lipitor) and fluoride because our water does not have fluoride in it.  All of them other than fluoride are liquid and are taken with a syringe - we draw up a measured amount and she takes it in her mouth.  The fluoride is a chewable.  She will, at some point, be able to switch over to pills, but for now, it is liquid and she has adjusted to taking them just fine.  Other than that, we have to get blood draws done to check her immuno-suppressant levels every once in a while.  We have to drive about 4 hours to get to Stanford for clinic appointments and biopsies to check for rejection about every three to six weeks.  Overall, her life is not that much different than any other three year old.  But, she is at risk of getting sick easier and staying sick longer, she obviously has ongoing medical appointments that others would not have to deal with and she suffers from some side effects of her medicine like diarrhea and stomach issues.

Overall, I can not think of a better outcome than we've had, considering how very sick she was as a baby.  I am so thankful that heart transplants have become as successful as they have for infant recipients and I'm thankful she was able to get a heart when she most needed one.  And we will continue to do our best to be one of the positive statistical results of heart transplantation!

G is for Gorgeous Day! (and Gigantic bubbles)

Today is an Instagram day.  I've just discovered it and I am absolutely loving it.  It was a beautiful day in our hometown today.  The sun was out, but it wasn't too hot.  It wasn't too windy.  And we enjoyed some outdoor fun.  This morning we went for a walk and found that someone's sprinkler system was malfunctioning and had created the best puddle.  So, we came home, donned the rain boots and went back for some splashing.  Even Bella, our dog, got in on the fun!

Later in the afternoon/evening, we got out one of Gigi and Papa's Easter gifts - a giant bubble making wand! It worked really, really well and we all had a lot of fun making gigantic bubbles in our front yard.  It took Bean a few tries, but she finally got the technique (lay the wand completely flat and then pick it up very slowly) and she got some HUGE bubbles on her own:

This evening, we decorated some eggs.  I used the idea from Wildink Press to bake the eggs in the oven rather than boil them and it was so easy!  I mixed up some vinegar, water and food coloring and then we decorated them with colored markers and glitter glue pens.  They aren't exactly museum-quality pieces, but Bean had a blast!

That's it for this gorgeous day!  We enjoyed all parts of it and are looking forward to fun visit to Grandma and Grandpa's house tomorrow and maybe even a visit from the Easter Bunny tonight (although the basket has yet to be built...better be getting on that soon...its getting late!).

Wishing you all a very Happy Easter and a great week ahead!

"Egg"cellent Easter Egg Hunt and Family Fun

Well, I've missed a few letters/days in the A to Z adventure, so I'm just jumping right in with "E" (yesterday's letter) and "F" (today's letter).  Not exactly what the monthly meme was designed to do, but I will have to go with it.

My local Chico Mothers Club had an egg hunt this week and we had great fun.  This was the first large character that Bean has been willing to actually touch and sit on their lap!  Usually she is really excited to see them until she gets up close and then she gets scared.  But, she climbed right up for the picture, although as you can probably see from the picture, she was not exactly confident in her decision.  She had fun with the Easter Bunny, but really liked the pre-bunny activities - playing in the park:

and of course, the egg hunt (not a challenging one because there were only 4 and younger there, but they had a blast):

The day was particularly special because Bean's "Gigi" and "Papa" were here for a visit!  So, we all got some special Family Fun time Easter-style.  The day was gorgeous.  The river was running fast after all the rain, but the sky was nearly cloudless for the egg hunt:

She spent time with Papa and Daddy...

And some with Gigi...

And some time by herself just enjoying the great outdoors...

All in all, it was a great day, especially after the last few weeks of illnesses, doctor and hospital visits, bad weather and just plain miserableness!  We were also able to enjoy the first of our Thursday Night Markets here in Chico.  We will celebrate Easter at her other Grandma and Grandpa's on Sunday with her favorite Aunt and hopefully her cousins.

I'm really happy to have had this time as her Dad is leaving again on Wednesday for work and then when he comes back we will be straight into the tonsillectomy/adenoidectomy, which will obviously have some recovery time (and a night in the hospital again) and some anxiety for all of us.  But, if it helps her sleeping become more consistent and restful (and possibly even give her a better appetite) and keeps all the ear infections at bay, it will be more than worth all of the hassle!  Fingers crossed.

For now, I leave you with the Bean readying herself for her day out...I think the smile says it all!

Hope you have a very Happy Easter or Passover or just a great weekend!  

A is for Allomap Molecular Expression Testing

I have decided to participate in the Blogging from A to Z Challenge and since I have recently realized how much I DON'T know about heart function, heart diagnostics, etc. I have decided to use a theme of heart disease and  make it to treatment.  I will try not to boring and dry, and hopefully someone reading will find it somewhat helpful.

With our recent problems in the areas of biopsies  and the fact that she has only one access point for biopsies (as opposed to four), I've had a lot of people asking me about alternatives to biopsy.  One such alternative is the recent AlloMap Molecular Expression Testing - or the blood test for rejection.  Bean is not eligible for this alternative - one has to be at least 15 years of age.  So, she has a long ways to go.  But, I thought for those curious about this, I would share the facts as I know them.

Approved by the FDA in 2008, the test is designed to provide an alternative to invasive endomyocardial biopsy (what Bean gets) for those patients who are stable and asymptomatic.  The test only predicts probability of moderate/severe acute cellular rejection.  This is only one type of rejection.  The others are antibody-mediated rejection (AMR) and cardiac allograft vasculopathy (CAV).  The test can be used in conjunction with other clinical assessments (echocardiograms, EKGs and examinations) to judge whether an invasive biopsy is needed (negative numbers would be followed by a biopsy for more exact information).

The preliminary results of clinical comparisons between the AlloMap and biopsies is pretty impressive.  Over a four year period, from 2005 to 2009, the test was used on 602 patients in 13 transplant centers and results showed there was no inferior results when compared to biopsy for clinical outcome.  Now, all that technical language simply means that those having regular biopsies were no more likely to suffer acute rejection than those receiving the AlloMap instead.  Which is good news, but doesn't mean that this test does away with biopsies (because the way a patient is found to be stable and asymptomatic is through routine biopsies following the transplant - all the test subjects were at least six months post-transplant).  But, it will save individuals a lot of invasive procedures if they are doing well clinically and have no signs of rejection or other problems with the heart.

I would assume (although I don't know for sure) that there would still be a need for annual biopsies because it is during these that they test the elasticity of the arteries and other issues that are known to cause issues for recipients.  But, only having to have biopsies once a year instead of three times a year would be a very welcome change for us right now.  But, again, we aren't even in the running for this choice.  And I don't know if Bean's history of rejection (two 3s in the first year and a number of 1As post-transplant) would disqualify her as a candidate or not.  But, I guess I don't have to worry about that for at least 12 years.  I have spoken to a few people who are using this technique.  Some of them love it.  Some of them feel a little trepidation at trusting the results as much as they would a biopsy's result.

Anything that provides transplant recipients and their doctors more choices in treatment and evaluation seems like a welcome thing to me.  So, I hope that AlloMap continues to be successful and improve and maybe even gets approved for younger recipients so kids under 15 do not have to suffer so many of these invasive procedures!

So, that's today's A topic - AlloMap Molecular Expression Testing.  The information presented here came from the product's website and/or the wikipedia page for the product.

Blood Draw, Petco, Barnes and Noble and lots and lots of sleep!

That about sums up our day.  The picture over there is actually from a few weeks ago (we are regular Petco shoppers - Bean loves the place), but today was much the same but with a different outfit.  The blood draw this morning was a little more traumatic than usual as I think Bean was still upset about the IV "poke" in her hand that is hurting her, so another "poke" was not on her agenda!  But, she made it through.  I think I've said it before, but the blood draw person here in Chico is magical!  She finds Bean's vein the first time everytime and is so fast!  Same today...so, Bean was upset, but not upset enough to skip the trip to Petco and Barnes and Noble we had discussed.  It is nice that she is so easy to entertain/please!  We got some dog treats for Bella, a cat bed for Nosey and a starfish decoration for the fish tank before we departed.  We then did our tour over to Barnes and Noble (in the same shopping complex) and visited the train and read a book on Underwater Animals that we ended up purchasing.  Overall, a good morning, sans the blood draw.

She has still been pretty grumpy today and the weather is not helping.  Its very windy and cold (better than the pouring rain we had yesterday when we got home) and she really loves to be outside.  We played for a while outside while I gave Bella (our dog) a much needed bath after her trip through the mud puddles out in the backyard earlier today, but it got too cold and windy after a while.  She napped for an hour or so this morning and has been napping this afternoon for a couple of hours.  I think the hospital wears her out (just like the rest of us...hospitals are not good places for restful sleep!) and makes her grumpy.  But overall, she seems to be doing okay today.  No fevers.  Her eczema is looking better.  And she even seems to be snoring a little less today than she has been the last couple of days.  Now, I hope that the elongated nap today does not lead to a late night tonight, but we shall see.

Thanks to everyone out there for their kind words and thoughts and support!  I am excited to get some health things out of the way this month (the biopsy was a biggy, the tonsillectomy even bigger!) and I'm so thankful that we were able to escape from the hospital yesterday.  I know there are many families out there who do this repeatedly and have much longer stays, so we really are extremely thankful.

Biopsies 2, Bean 0

Well, our luck with biopsies lately has not been good.  Last biopsy (November of last year) Bean was running a 103 degree fever by the time we arrived at my parent's house about an hour and a half away from Lucille Packard.  She ended up having pneumonia and we spent four days in the hospital, including Thanksgiving.  

This time, we didn't even make it out of the hospital.  Bean was scheduled for biopsy at 11:30 a.m., meaning we arrive at 10 a.m. for pre-op.  Typically, I try to make sure she is the first case of the day, as every additional case means the possibility of running behind schedule.  But, because we found out she was going to have to have a tonsillectomy/adenoidectomy mid-April, I wanted to get the biopsy out of the way ASAP and they had an opening on March 26 for mid-day, so I took it.  But, as I expected, they were running behind, so they didn't actually get her into the biopsy until about 1 p.m.  We got report on her about 2:30 p.m. that she was doing fine and would be in recovery getting her echo and we would be called back to see her.  It seemed to be an unusually long period of time before they called us back, but when we arrived, she was just finishing the echo and was NOT in a good mood.  Because her recent sleep study showed extremely bad apnea ("worst case I've seen" says the ENT...when Bean does something wrong health-wise, she really does it well...), the anesthesia is becoming a bigger concern, so they had to give her some additional breathing support and that required another form of anesthesia that makes them a little more cranky upon waking.  She finally wore herself out and calmed down to have some Popsicle and apple juice.  

When Nancy (transplant team NP) came to tell us about the echo, she started out with "Well, the good news is..." and I immediately knew something was wrong.  Usually they just say "everything looks good."  So, she told us all the function looked good, no effusion, but during the biopsy there was some damage done to a "hinge" that controls the tricuspid valve (which they go through with the cath) and now the "hinge" is not closing that valve 100% properly.  So, there is now some "leakage" in her valve.  At present, it did not show any functional changes in the flow, so it seems to not be anything serious, but it is obviously not something they want to happen.  And although the echo looked good, Bean's heart rate was seriously elevated and staying put at about 40 beats per minute above her norm (technical term = tachycardic).  So, the concerned looks came out, an EKG was ordered and Nancy told us she would show the head of the transplant team the EKG and talk to him about the situation.  At that point, I think both Jason and I were pretty much figuring out we would be staying.  The EKG had "significantly changed" from prior EKGs of hers, which is a concern I guess (in all honesty, for a mom of a heart transplant recipient, I really don't know a whole lot about the heart and all its parts and functions - but, I think I'm being convinced that I should learn it).  So, she was admitted for an overnight observation.  Sigh...

Her heart rate slowed down just about the time she got to the floor (hospital room), but it was still a little bit high.  And on doing vitals when she was admitted, her temperature was a little high.  So, I was afraid something else was going on other than the high heart rate, but Tylenol did the trick on her temp and she was okay overnight.  They reran an EKG when we got to the floor and did another one this morning and all three show the same difference.  She now has some kind of wave change (again, this is something that I am not that familiar with, but will have to ask more questions about at the next clinic appointment) and that could mean an injury (the one to the valve maybe?) or "bruising" - but, I don't know for sure.  They did not seem that concerned about it, but we do have a follow-up in two weeks with the clinic, so it could be something that will require monitoring for a while.  I'm not totally sure.  I do know her heart rate went down, her temp has been fine, and they released her today about Noon.  We are back home and although she has been in a really bad mood tonight (mostly due to her hand that they put the IV in being bruised and it seems to really be hurting her...oh, and she has developed a wicked case of eczema...yes, another health problem...on the palms of her hands, of all places, and they are itching like crazy), but other than that, she seems to be doing fine.  

So, things with this biopsy did not go so well.  But, hopefully over the course of the next few weeks, she will be able to breathe better at night (oh, her apnea score was 43, which I guess is something like 20 incidents higher than the highest that most of the people working with her, including the ENT, has seen) with the tonsillectomy/adenoidectomy (she was just coughing due to that problem as I typed this).  We can figure out what exactly is going on with this valve/EKG/heart rate issue we had yesterday (I need to write down a list of questions to take to clinic with me this next time).  And we can get her prograf levels right.  I have to take her in for a blood test tomorrow (great way to wake up the morning after being released from the hospital, eh?) because the biopsy ran so late that the trough level was probably not accurate, but it was pretty low for her.  So, hopefully tomorrow will show it where it should be.  

All this, and we didn't even get a zero on the biopsy result!  :(  I had really thought we were going to have a few in row, but we are quickly back to the 1A.  Oh well, they keep telling us its really the same as a zero (than why not call it a zero?), so I guess we should be happy.  

Other than that, these past two months have been the weeks of ear infection (a side effect of enlarged tonsils and adenoids), 10 days of antibiotics, a few days off and then another ear infection.  And she finished her last bout of antibiotics about six days ago, and I'm pretty sure she has another ear infection (her eyes seem to get goopy when she has them).  So, we will surely be in the pediatrician's office in the next few days as well.  Sigh...I could really use a couple of weeks without doctors, blood draws, biopsies, etc.  But, it certainly isn't going to happen for us anytime this month!  Right now, we're looking at blood draw tomorrow, follow-up clinic on April 11 and tonsillectomy/adenoidectomy on April 17.  And I'm sure there will be some pedes visits mixed in.  In addition, I really need to get her into a dentist soon.  She will now need to take antibiotics (because of the valve situation) before having any dental work done, so that is an added layer to the mix.  I, personally, detest the dentist.  So, this has not been something I have been very good about doing.  And with her medication and still drinking Pediasure so many times a day, its something I really need to make happen and soon.  Her first visit was without trial - no cavities, no issues.  But, its been longer than it should be since that one, so I'm afraid of bad news.  I could really do without bad news.  And she could really do without having dental work...but, I should get her in sooner rather than later as putting it off only makes it worse in the end (something I've learned from personal experience).

So, that, in a nutshell, was my last couple of days!  I hope all of you out there had better.  

A Long Time Coming Update and a Little RxArt

I know I haven't posted here in a while.  Its been a...well, it seems like its been a couple of years of struggling to get a grip on things, getting a grip and then quickly losing that hold and having to struggle to get a grip all over again!  So, sometimes I feel the desire to post something here, but I quickly lose out on the "current event" status of the post and then it feels silly to post it.  Overall, since we left the hospital for Bean's pneumonia in November of last year, things have been up and down, but all around okay...and very, very busy.

When she got out of the hospital, Bean did fantastic.  It was as if she was breathing through another person's nose and/or mouth!  She didn't snore.  She didn't gasp for air while sleeping.  It was amazingly peaceful sleep.  But, as time went by, she was back to her snoring self.  Soon, it was as bad as before and she had a runny nose and started to cough.  We had to cancel a sleep study because of the illness.  She was diagnosed with Strep Throat, although she wasn't tested for it because it just seemed extraneous - the pediatrician put her on antibiotics.  She was on those for 10 days, got better, then about four days later, she started to complain about her ear and she was back to a runny nose.  So, we went in and she had an ear infection and some upper respiratory stuff going on.  So, back on antibiotics we went (a different one this time).  She was on that one for 10 days and seemed to be doing better again, although still a little stuffed up.  We were off antibiotics for a few days, the stuffiness continued and a slight cough and then she woke up from a nap with goop in her eye.  The next morning her eye was pretty much crusted shut.  Back to the pediatrician we went.  This time, she had one ear "full of puss" and signs of a possible sinus infection.  The eye thing was probably from her ears and sinuses being so full they didn't have anywhere else to drain but out her eye.  Ick...so, on to the third antibiotic.  That was last week and things just didn't seem to be improving greatly over the weekend.  She would feel good and then crash.  She would cry at night (I assume from her ear) at random times, over and over.  So, we went back to the pediatrician this week and found that she had infections in both ears - the right one looked like "it had not been treated at all".  So, we changed back to the original antibiotic she was on for the ear infection and started her on allergy medicine to see if maybe this is all related to allergies.  Sigh...

Tonight, we have our sleep study. Even though she isn't 100% healthy at this point, I don't want to put it off any longer and I feel like her sleeping/snoring/apnea stuff is pretty representative right now of what it has been other than that couple of weeks after she got out of the hospital in November.  So, we'll be going to Mountain View tonight for that.  Wish me luck!

The impetus for writing this update came in the form of a post about RxArt - a non-profit that "promotes healing through exposure to fine art" and has done some amazing projects at different hospitals around the nation.  As someone who has and will continue to spend a lot of time in a hospital setting (even if just for visits), I so appreciate the art that is made available in these settings.  Lucille Packard has some great pieces in their collection and I'm always excited to see anything new that comes along.  Recently, they changed out the art in the pre-op waiting room and made it all sea creature paintings.  This was an obvious boost to Bean's spirits when we went!  Anyways - I encourage you to check out the link and explore all the different projects and if so inclined, donate some money to the cause!  The picture at the beginning of this post is from their latest CT Scanner project at a Children's Hospital in Illinois.  We have not been through a CT Scan experience, but I hear they can be pretty scary.  So, these happy monkeys could really make a difference for some kid!

RxArt | Promotes healing through exposure to original fine art

I am hoping that I will be able to be more regular about updates on here...wish me luck at getting...and keeping a grip.  For at least a little while!  Hope everyone out there in the land of the internets is doing well!