Still No Zero...

Well, we got the latest biopsy results yesterday and Bean is still sitting at a 1A status.  It was a little disappointing.  Our transplant team nurse, Nancy, was the one who called and she had not spoken with our cardiologist yet, so we should get a call today letting us know if we are making medication changes because of this.  Nancy said that the 1A status isn't THAT bad and that actually many transplant facilities view zero and 1A as clinically the same, but Stanford has seen some correlation between chronic 1A status and problems with the coronary arteries developing.  But, Bean just had her annual exam where they test all the pressures in her heart and the elasticity of her arteries and they found everything to be in great working condition, so they aren't as concerned as they would be if they were seeing things changing in her heart function.  So, that's good news.  But, I was definitely let down by the news.  Nancy had not talked to our cardiologist yet about what medication changes we may make, but they did take Bean off of her aspirin.  This is nice because it was one that we had to cut a tablet and grind it up and mix it with water every time, so the med regime got a lot easier with its removal!  Now we only have the lipitor that we have to cut, grind up and mix with water. 

Nancy mentioned that they may try putting Bean back on the cyclosporin that she was on before.  I can't say I'm very excited about that.  That med has a lot of side effects, many of which are cosmetic.  It makes the recipients hairy, a little bloated looking (its called moon-face - cheeks get big and the face rounds out), and for babies it can make teething difficult because it tends to cause rather dramatic gum swelling.  So, they're teeth literally get stuck under a bunch of extra gum tissue and they often have to have a lot of extra dental work because of it.  We think her early experience with cyclosporin (she was on it for about three months post-transplant) is why her teeth came in so weird (molars first, now only one on the bottom - she did finally get four on the top).  Don't get me wrong.  If it makes her heart work better, then of course I'll take it all, but if its going to be the same as with Prograf, the Prograf seems much better side effect wise.  And she was never a zero when she was on the cyclosporin either, which makes me think that it wouldn't necessarily change things.  But, we'll see. 

On one good note, we do get to go three whole months before the next biopsy!  That is one month more than we've been having between them for the most part.  It still isn't what we were hoping for.  The biopsies are definitely getting harder.  She got upset yesterday as soon as they started "bugging" her with the blood pressure taking and pulse ox and stethoscopes, etc.  She was just not wanting to be poked and prodded.  So, there was lots of screaming and crying and kicking.  Its exhausting trying to keep her from losing it every time they have to do something.  Then, when she comes out of the biopsy and wakes up, she gets REALLY pissed off because she has an IV in (she still wants to rip that out immediately upon seeing it - they have to put a little protective board over it and tape it up like a cast to keep it in) and a pulse ox on (which they also had to tape on because she kept taking it off) and all the leads for her vitals stuck to her.  And she has to lay still (supposedly - she doesn't do this well at all) for 1/2 hour or so while the wound heals.  So, she sprung a leak because she was crying/screaming so hard it started her cut bleeding again.  She finally calmed down for a while when we gave her a bottle, but it was not fun.  And I have a feeling its going to get harder rather than easier until she's a lot older and can understand a little better what's happening (and even then, she may not like it much...).  I do know that from now on we can not get up and drive from Chico in the a.m.  We got up at 4 a.m. and left at 4:30 a.m. and got stuck in traffic on the way, so we were late (stress), then drove all the way back and got home around 6 p.m.  That is one long and exhausting day!  So, from now on, I think I'm going to try to get a room at the RMH for the night before or stay with my parents who are about an hour away from Stanford.  The traffic is just too much to deal with before that kind of stressful day!

Today we are going to the Pumpkin Patch with the Chico Mothers Club.  I'm excited to go and think Bean will have a great time.  If I can find my camera (I have misplaced it somewhere and I haven't been able to locate it), I will take lots of pics!  She did recover well from her biopsy - she was great yesterday and had a very active day.  We went to the library for story time (where she is a star - she always goes right to the front in front of the story leader and claps and dances the whole time), then to play group at our local outdoor kids' park, Caper Acres where she climbed stairs, played in the sandbox, slid down a slide a few times (well, 1/2 way down, I would lift her up on it as far as I could reach and then hold her as she slid down - she loved it, but wouldn't slide down from the top on her own), and got knocked down by another little girl playing there.  Actually, she got knocked down by bigger kids twice yesterday - at the library, a little boy wrapped his arm around her neck and basically threw her down.  Luckily she was on the carpet and he wasn't much bigger than her, but it definitely scared her.  His mom was very apologetic, but it makes me glad she isn't in daycare.  She is just so small compared to kids her age.  Then at Caper Acres, the cutest little girl with blond hair was walking across the playground and her mom was trying to get her to leave and Bean walked up to her (like she does just about everyone - she is very social), and she just reached out and pushed Bean in the chest and knocked her down.  It was so weird.  The mom tried to get her to apologize, but it was not happening.  She just sat there tight-lipped.  Again, Bean wasn't hurt, but it definitely shocked her and she cried for a while.  So, big days for Bean...going places, seeing things and getting knocked down!  :)

Hope everyone out there reading is having a good week and is looking forward to a good weekend.  It is supposed to be raining here this weekend and although I'm ready for fall, I'm hoping the rain isn't too hard as we'll be at a Speech and Debate tournament all weekend and can't avoid going out in it because of that.  But, I am happy to see fall weather finally coming! 
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Biopsy Number...who knows? Tomorrow!

Well, we have yet another biopsy tomorrow for Bean.  I have a feeling it will be a long day, but not nearly as long as her last biopsy day (wow, was that ever a doozie!).  I hate to say it, but I think these days are just going to get worse and worse as she gets older and more aware of what is going on. She still doesn't seem to react poorly on arriving at places - for example, we get blood drawn here in Chico quite often and she is still perfectly happy when we arrive and even when we go back to the room where they do the draws.  She doesn't get upset until they actually tie the rubber band thing around her arm...and boy does she get upset then!  She has a great set of lungs...  But, then, once they pull the needle out of her arm, she immediately calms down and will blow kisses to the woman who does the draws (who loves the Bean, which is nice).  So, she doesn't hold a grudge either.  But, she doesn't like to be restrained and during recovery from the biopsy she is supposed to keep relatively still.  Last time was especially bad because she had the longer biopsy for the annual, so maybe it won't be so bad this time.  We shall see.

We are hoping and praying for a zero this time as it would mean we would be able to stretch out the time between biopsies a little more (maybe move to 4 - 6 months in between instead of this every 2 month schedule we're on).  It would be nice for her not to have to have them so often and it would mean we would space out visits to Stanford a little more as well. I'm glad they are keeping a close eye on her and trying to figure out the rejection levels...but, I am also starting to worry about access.  I guess the biopsies aren't as likely to do damage like the lines she had in during her hospital stay, but usually there are four access points they can use to do these biopsies - one on each side of the neck and one in each groin.  Bean has one access point - in the left side of her neck.  The rest of her access lines have a blockage (not sure what it is causing the blockage - I was unclear on whether its a clot or scar tissue or what) that will prevent the cath line from getting through.  Thankfully she has the one access point - and none of the doctors seemed to want to discuss with me what would happen if she lost this access point (one of them told me, "we're just going to think positive and say that we won't need to worry about that"...which luckily has worked out to this day).  But, it worries me she is having so many of these biopsies through that access point.  I hope it holds up.

Other than the low-level chronic rejection (which is what they call her repeated 1A status in the clinical reports), she is doing quite well.  She is a ball of fire.  She is babbling constantly, has a vocabulary of about 15 words now (and many, many more in her own head - but we can't understand any of it), can imitate just about any farm animal, and is a total ham.  She definitely seems predisposed towards performing for people...  On the homefront, she is a horrible sleeper and often spends about half the night in our bed because she seems to sleep better there once she wakes up in the middle of the night.  Which is frustrating, but I suppose it could be worse.  Her size is a challenge in doing all the toddler training things - even with a step she can't reach the sink to wash her hands because she is too short.  She is still not quite 28 inches tall and according to the nutritionist last week, she weighs 17 lbs 10 oz.  But, she thinks she is 6 feet tall and 340 lbs.  She is not afraid of much of anything (well, okay, she's a little afraid of balloons - she likes to look at them from afar, call them by name "baon", but if one gets near her she really flips out) and loves to explore - everything! 

Speaking of the nutritionist, Bean is now on Duocal (thanks to the other heart moms who sent me their extras...we're going to look into getting a prescription for it, but we're set right now with three cans) and benefiber (to try to firm up her stools a bit).  I may start calling her Benjamin Button because she is on so many old people's meds!  Lipitor, blood pressure med, now Benefiber...kind of funny.  Anyways, the nutritionist says she is getting too much protein (because she gets most nutrition from her formula, which is high in protein, and for a while chicken was her main food source as well), so we're currently trying to diversify her diet.  She has been off her Periactin for three days now (ran out a little early - more coming today) and I really can tell the difference in her eating.  She doesn't have much of an appetite without it.  She is still primarily on formula for nutrition, which is also frustrating, but I want her to keep gaining weight.  We did discover she loves chocolate, so I got some Nutella yesterday and I'm going to try some of that today.  I'm sure we'll figure it out...it will just take some time. 

Well, I have many, many things to do today to get ready for our day away tomorrow!  If you read this and think about it, please send some thoughts of "ZERO" our way tomorrow!  I'll update later this week when we get the results.

Pumpkins, Flowers and Cows, Oh My!

Its that time of year again!  I have decided that this is the week to begin our preparations for Halloween!  One of my favorite holidays...I was inspired by a post over at The Mustard Seed to take a look back and also a look forward.  Her post, Fall In Love...with a lil Pumpkin was a look back at their first healthy Halloween with their son Jude who has a chromosomal abnormality called Partial Trisomy 17 and a heart defect known as Hypertrophic Cardiomyopathy.  I decided it might be nice to do a similar look back at Bean's first Halloween here! 

Last October, we had just been released from the Ronald McDonald House and finally headed back to Chico after months away!  So, we had moved to a new house (we had moved out of our last house and put our things in storage thinking we would have to wait much longer to find a heart for Bean...we are so thankful that we were able to find one so soon after being listed...) the middle of October and I definitely was excited to be home with Bean for Halloween (I love Halloween...such a fun holiday!).  We took a trip to Max's Miracle Ranch - a very special place run by a family whose child has had heart issues of his own - and they now run this ranch for families in similar circumstances, do fund-raising for them and get group tickets to local events for the families and their kids.  They are truly special people doing special things!  So, we went and visited their pumpkin patch, saw some pigs and met the family and some friends who were there.  I am definitely planning on visiting there again this year now that Bean is old enough to recognize the animals and have some fun!  But, here we are in the pumpkin patch - it is crazy for me to see Bean so small and puffy (from the medication she was on at that time).  What a difference a year can make!  But, she was still awfully cute!

Bean weighed a little over 10 lbs at that time.  She is now not quite double that - somewhere around 18 lbs. now.  So, she is still pretty small, but just looks so much older!  Here she is at our first pumpkin patch visit of this October (last week - it wasn't Max's Miracle Ranch...just one that we drove by a sign for and I HAD to go and get a pumpkin or two to get the season started!):

 Bean with her magical white princess pumpkin!

 Bean and I with a pumpkin that is probably 20X Bean's size!

 Bean and our friend Steve...enjoying their hats together!  Bean just learned how to say hat this week...she still doesn't like wearing them, but she loves saying their name!

It was a quick visit, but Bean loved picking out a pumpkin her size and she now knows what a pumpkin is and likes to go get hers when we ask for it.  She did try eating it, so there is a small bite mark in it now, but luckily I had washed it when we got home just in case she decided it might taste good. 

Of course, the most fun part of Halloween is dressing up!  Last year we couldn't really get out much because she was still on heavy doses of predinisone and other anti-rejection medicines.  This year, we are a little less afraid to wonder out into public (although flu season will always be a scary time of year for us), so I have a few Halloween celebrations on my schedule for us to attend - most of them through the Chico Mothers' Club.  It should be great fun and we'll have a lot more pics this year.  Last year, we did dress her up for Halloween and she helped us hand out candy to people who came to the door.  She was a cute little flower:

 Those eyebrows and cheeks were really something - getting off the cyclosporin has really brought them into proportion with her face now - but the puffy cheeks looked great with the flower costume! 

This year, she will be going as a cow!  She has the moo down (it was the first animal noise she learned - she now knows a whole lot of them - more animal noises than words), and I can dress up as a farmer!  :)  She is walking like a champ and loves to carry bags, so she is ready to roll for this Halloween! 

So, I'm going to try to get our Halloween decorations up tomorrow and start getting more in the spirit of the season. It isn't easy because it is still summer weather here and doesn't seem like October at all.  But, we'll make it work! 

How are you all celebrating Halloween?  Tell me about it and link to your blogs in the comments!

Doctors & Hospitals - Resource for Parents

Doctors & Hospitals

The link above will lead you to a great resource! For those who are unfortunate enough to be looking forward to hospital stays and/or multiple doctor visits, there is some great advice. There is also good advice for those who have a young child taking medicines (how to get them to take it, etc.) and the administrative things you need to consider for health care of a child. I HIGHLY recommend this as a bookmark for anyone as you never know when you will need the information and it will make you feel better to have it when you need it! I subscribe to the Kids Health newsletter and although a lot of the information is for children much older than Bean, I have found a number of things in it to be very useful.

Perspective on Health Care - Primary Care Physician

Health care is obviously a big concern to me and my family.  We no longer have the option to be unaware or nonchalant about that part of our lives.  I have been through a lot of workplaces in my lifetime and I don't ever remember even checking to see what the health insurance was, let alone what the co-pays were or prescription coverage.  As long as there was some kind of health care, I was fine with it.  But now, I have to be concerned.  I went to our benefits fair for the first time this year, just to ask whether any changes were happening to our health coverage and if so, what they were.  (Luckily, there were none - we're paying more each month, but considering I was on furlough for the entire year last year, my take home is still more than it has been, so we'll take it.)  I've never been to a benefits fair for any reason other than getting free stuff before!  So, I follow the health care discussions and try to figure out how new laws may change things for us.  And I am definitely someone who has concern over the high cost of health care.  But, I think its interesting to hear different perspectives on the issue.  My debate team did a panel presentation on health care a few semesters ago, and I remember someone in the audience introducing himself as a local doctor and discussing how the health care issue was making him struggle as a physician - I had never thought of things from the doctor's perspective prior to that.  After all, I had fallen for the urban myth that all doctors were rich and they were part of the problem, not the solution, for cost in health care.  But, that night changed my view.  As I was reading through a medical newsletter I receive, my eye landed on a similar story and I thought I would share it with you - just in case you are still believing the myth of he rich doctor overcharging for services...


The blog post, simply titled, "Caring" was written by Dr. Rob, a primary care physician in the Southeastern U.S.  He writes of his experience as a physician, adjusting to the new "patient-centered" health care (of which he is a fan), but he also writes of his challenges:

So why is it, then, that those of us who try to be patient-centered in our care end up getting penalized?  If the days of the doctor-god are over, then why are we still paying premium dollar for those huge egos?  Why do we pay more for technology than humanity?  When I face the continued threat of declining reimbursement (don't forget, the next SGR battle will be over a 30% drop in Medicare reimbursement) I feel angry.  I am the point of care, not cost.  I am cheap. I spend my day trying to keep people well, trying to find cheaper medications for them, trying to avoid expensive procedures and consultants.  How am I rewarded for fighting the tide of spending?  With increased expectations, increased fear of the future, and decreased pay.  I see the gratefulness of my patients, and that keeps me from fleeing altogether; but I also face the callous cuts by CMS, the increased micro-management by the insurance industry, and accusations of being a "greedy doctor" for not wanting my pay cut.

 First off, this is not the first time that I have heard of primary care physicians getting major cuts in the amounts they are reimbursed from both the government and insurance companies.  But he talks of other things that I was not so aware of and that make me kind of sad:

 In the past few weeks I have done three "mobility evaluations" for people who are trying to get scooters.  They have done this in response to the commercials or direct phone calls from the companies that provide these devices.  Beyond that, I have seen a huge increase in the number of ludicrous requests by these companies who prey on innocent and ignorant patients.  They are leeches.  They are bloodletters removing the life-essence from a dying patient.  Yet their presence is growing.

We all laugh at those commercials where the person is cruising around the lake on their scooter, but I didn't realize the implications of those commercials.  I had never thought beyond the ludicrous commercials to the ludicrous requests they may be causing.  He goes on to discuss the complexities now involved in prescribing medicine - something I can definitely related to when looking at the costs on our monthly medication bill (thankfully, we only pay a $5 or $15 copay for Bean's medicines, but I see the actual cost charged to the insurance company as well - and for some of them, wow...).  He closes his post with a plea:

We have a bunch of hands being plunged into the coffers of healthcare, and yet we are penalizing those who are too busy caring for patients to do so.  I honestly get depressed when I see all of the waste around me and yet face huge cuts to my reimbursement.  It shows people don't understand.  It shows people don't care.  Do you want doctors who care?  Then put your money where your mouth is.  Stop rewarding the parasites.  Stop throwing money at the turnstiles.  Stop rewarding the spenders.
There are some of us who still care, but it's getting harder to stay that way.

I know that there are lots of problems with health care.  I know that we have been the lucky ones - getting the emergency and long term care that Bean needed so desperately when she needed it without problem and without much cost (comparatively speaking to the total cost) to us.  But, I also realize that doctors are so important to us.  I respect them and I am indebted to them.  I do not want them unfairly vilified or unable to maintain their practices due to a flawed system.  So, I thought it important that I share this story and hopefully raise awareness about the struggles of our primary care physicians and pediatricians who are the first line of defense in maintaining our good health.  Let's figure out a way to reward those who care and make this system better for everyone involved - the patient, the doctor, and those who work in the health care industry.