2011 - Year of the Zero?

The year has been off to a busy start (what else kind of life is there?), but a good one.  Yesterday was Bean's first biopsy of 2011 and although the day was a long and totally frustrating one, the results were well worth it - a ZERO!!!  Its only her second zero since she got her transplant and we're very, very happy to have it.  But, it came after a long, long day.

Originally, we were scheduled for the first case in the Cath Lab (the picture on this page looks almost exactly like the one at Stanford).  But, five days ago they called to say that a baby had been born who was going to need to go in first thing in the morning - at only five days old.  So, we got pushed back from 8 a.m. to 11 a.m., which meant we could sleep in a little longer (originally, we would have to be there at 6:30 a.m., but now we had until 9:30 a.m.).  We arrived at 9:20 a.m., with Bean having not had a bottle or any food since around 10 p.m. the night before.  She doesn't really like juice or water much, so she had a very small amount of water that morning, but we were told to not give her anything after 8 a.m.  She was in pretty decent spirits until we got back to the pre-op examination room.  She has become more and more agitated each time and now she starts to get upset as soon as we get in the room.  She doesn't like being hooked up to the monitors (they will usually put her on a pulse-ox, take her blood pressure, listen to her heart and lungs and take her temp) so she just cries and fusses the whole time.  This nurse only made her do the pulse-ox because she was so agitated.  She tried to listen to her heart and lungs, but she was pretty much screaming the whole time.  We then went to the pre-op waiting room where there is a TV and some toys.  She was once again in pretty good spirits...then Nancy from the transplant team came and wanted to listen to her heart, etc. and she once again lost it.  But, Nancy has a Mickey Mouse watch that plays "Its a Small World After All" that Bean loves, so that distracted her enough to allow Nancy to listen.  She said she sounded good.  We once again returned to the waiting room.  We sat there for about 30 minutes before someone finally came and got us and took us to the pre-op prep room.

The pre-op prep room has a bunch of gurneys and any pre-op meds are given here and the anesthesia team comes and gets the patients from here to take them to their operating rooms.   So, we settled in here, trying to keep Bean's mind off of her "bah" (bottle) that she kept asking for all morning.  We watched some TV, we played with her puzzles, we looked at a book...but, she was obviously not the happiest person.  We waited a long while...the nurse finally came over and said that she had a call in to Mary (the cath lab manager/nurse) to see what was happening.  It was around noon when the nurse came with Bean's Versed (a drug that helps the patient to relax and supposedly allows them to forget what happens in the procedure).  She got loopy, she got very unbalanced, she hit her head on the crib gurney bars a couple of times, did some funny stuff...but, we continued to wait and wait (usually verced is given about 10-15 minutes before they come to get her).  The versed started to wear off about 45 minutes later and she started to get super agitated.  It was really stressful.  We found out about 40 minutes into the versed that the first case (the five day old baby) had taken longer than they thought and now they had an emergency case from the Third Floor PICU that needed to be done.

This is, of course, frustrating.  After all, you can't very well explain to a 23 month old why they are not being fed, why they are starting to feel overly tired and agitated and why they are going to have to continue to feel that way while being stuck in a crib gurney.  But, who do you get angry with?  The five day old who needed to have a heart cath?  The kid from the PICU who needed some emergency procedure (which, by the way, Bean was three times while in the hospital)?  The cath team, who obviously have a lot to deal with...much of it life and death situations?  There is no one to be angry with, no one to be mad at.  Only non-directed frustration with no chance of yelling at someone making you feel any better.  Bean finally fell asleep about an hour and 10 minutes after the Versed.  They came and got her about 2:15 or so and since she was sleeping, they didn't give her another dose of versed.  She woke up while being wheeled to the cath lab (which is a long trip down a hallway between the Children's Hospital and the main hospital), so I carried her the rest of the way.  We then gowned up and I took her in, put her on the table and held her while they put all the wires on her and put the mask on her - which she hates.  But, she falls asleep pretty fast after they start the anesthesia...thank goodness! On an interesting side note, they had "flavored" anesthesia, so the stuff coming through the mask smelled and I guess tasted like Caramel.  When she started to relax and stop crying, Bean tried to lick the mask!  :)

We had not eaten at all that morning, thinking we would be able to grab something around 11 a.m. so both J and I were starving!  We went across the street to the California Cafe to eat.  We thought it would be 30-45 minutes before we would hear anything.  The phone rang about 25 minutes later and I must admit that my heart jumped a bit...why would they be calling so soon?  But, the woman who manages the surgery waiting room for the Children's Hospital, Pam, is wonderful and immediately said, "Everything is fine - she's fine, but the doctor wanted me to let you know she was done and all went well.  Take your time as she will be asleep for a little while."  So, we quickly finished our meals and headed back over and once again, we hurried up and waited.  We sat in the waiting room for about 15-20 minutes and then were called back to the recovery room.  Bean was still asleep (thankfully), but had woken up and already tried to rip out her IV (the reason I was thankful she was asleep - she REALLY hates to have IVs in).  Our nurse was awesome and Bean slept right up until just before the Echo person came.  We made her a bottle and she sucked it down while getting the echo done.  It was about the calmest echo for her I've seen since she got out of the hospital.  She usually wants to grab the person's hands and push the echo wand around and roll away from their exam.  But, she was so hungry she just laid there and ate! 

Once the echo was done and read, the nurse cleared us for release and took the IV out and disconnected all the tubes.  We got Bean dressed and headed out, approximately 8 hours after we arrived.  Sigh...but, we were able to get home to Chico by 11 p.m. and Bean slept great last night and has been great today.  Her neck (where they went in for the biopsy) looks great - just a little scratch mark where they went in and a slight bruise around it.  She went to playgroup today and had a great time!  And this afternoon we got the call that her biopsy was a zero.  It made our day!  Not that there is a big difference between a zero and a 1A, but it was beginning to feel like we were on a road of rejection and we weren't going to be able to get off.  So, now I feel like we've at least found an exit and are headed in the right direction. 

We have to go in for a clinic visit in six weeks, we have an endocrinologist visit around that same time to get her checked because of some breast tissue growth and her fontanel is still pretty open considering her age.  We'll have another biopsy in three months and if that is another zero we get to go four months without a biopsy!  Which will be just in time for her annual biopsy.  Crazy to think that two years since transplant is that close!  It has been a whirlwind of a year and a half.  I still feel like I'm just figuring out what I'm doing!  And I only sometimes feel like I'm figuring it out!

So, things are a bit less tense now.  We have hopefully figured out the right med levels and Bean's body is being more accepting of her heart.  I still will not feel completely comfortable until we get another zero, since she has had one a while back, but immediately went back to the 1A status with the next biopsy.  And although I know that the zero to 1A distinction is pretty small, it just feels better to have a zero! 

Bean and J are taking a road trip together to visit his parents tomorrow.  I will be at home, prepping for the new semester, trying to get the house cleaned up and organized for the new semester and doing a little bit of R&R before things really kick in with classes, tournament travel (almost every weekend for the months of February and March), and the Bean.  It will be nice to have a few days of time to clean without risk of it being made a mess seconds later, to work without dealing with "bah" requests, dirty diapers and just general necessary Bean entertainment, and being able to leave the house with just a purse!  But, I will miss her a ton (and J a little too).  I feel like I miss something precious every day I'm not around her.   She really is a bright spot in my life and I'm so very thankful to have her and to have her healthy! 

I know not everyone's 2011 is looking as good at this point.  My thoughts and prayers go out to those families who have children in the hospital currently.  Please do the same if you are lucky enough to have kids at home who are healthy!  Thanks for reading!

2010 Recap Carnival - First Lines of First Posts

I have been motivated to do a little recapping of 2010 - using the method introduced by Musings of a Housewife.  I am taking the first line or two from the first post in each month of 2010.  If I think its interesting enough, I will include a little additional information.  2010 here we come:

January:  While staying at the Ronald McDonald House this summer, we met a variety of families who had children with a variety of conditions, and none of them are easy to handle.  But, the ones that struck me as the most unfair were those children who had gone through cancer and all the corresponding harshness of chemotherapy, only to find out that the very same drug concoctions that had saved their precious lives had caused their hearts to enlarge and stop functioning correctly.

Modern medicine is fantastic in so many ways, but still has many drawbacks with all the side effects.  Its a scary proposition when you have a child on multiple drugs with multiple side effects.  I did read online from a doctor that one of the reasons they switched from single immunosuppressants to a combination of two or three immunosuppressants was to cut down on the side effects from high doses of the one - but just like with chemo medicine - there are great and necessary benefits, but also horrible and scary drawbacks.  Nothing is perfect...

February: Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects.  The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!

This post reminds me that I need to get on writing letters to city and county officials about declaring a CHD recognition day in February.  Good reminder...

March: Today I have a special blog entry!  I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna.  The book is about a little boy Jimmy who finds a special shell at the beach and brings it home.  Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!

An awesome book that Bean loves looking at, even though she is not patient enough yet to let me read it to her in totality.

April: This was posted on one of the listservs I am a member of and I thought it was cute.  Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:

The post was a job advertisement for a parent - very cute and very true to life!

May: So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".

'Nuf said!


June: We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!

Only zero since the transplant, so I will relish it a bit.  It doesn't seem like it was that long ago, but it also seems like it was forever ago.  I distinctly remember thinking that we had it all figured out and would have zeroes from there on out...but, no.  Its been the only one.

July: I didn't write a thing in July.  That is kind of sad.  I wasn't even working as an excuse.  Oh well...

August:  And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule! 

And there is my excuse for the lack of posting in July and no posts until the middle of August.  The "bleh" is referring to Bean's annual cath which was scheduled for the next day.

September: Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!

October:  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.

A post about health care and some things that were unknown to me prior to reading this doctor's blog post.

November: Just thought I would share a few of our highlights from Halloween!  We celebrated the whole weekend, with Bean's Grandma and Grandpa from Bakersfield in town.

That was a GREAT weekend.  I really enjoyed Halloween this year!

December:  I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry.

And ending on a worrying note...appropriate I guess.  Its always there...underlying everything.  But, there is also a ton of good in these blog posts.

The year ahead - who knows what it holds?  I hope to blog more regularly here and definitely don't want to have a month with NO posts next year!  But, we shall see!  I wish you all a Happy New Year!

For 2011: Recognitions, not Resolutions!

It is already 2011 on the East Coast as I write this.  I have been rather resolute in not making resolutions this year.  They seem to serve as nothing but reminders of how much I DON'T accomplish in a new year.  So, instead, I'm going to be doing recognitions for myself.  I know I do accomplish things (even if they are often mundane things), but they never seem to be the things that I set out to accomplish.  To avoid all that guilt and disappointment, I will be doing some daily recognitions - reflecting on what I've accomplished each day.  Basically, I'll be giving myself some credit! 

This year has been hard on me, especially the last two or three months of it.  I can't point to any specific reason why - there were no hospitalizations for Bean (thank God), there were no tragedies amongst family or friends to speak of, there was just a lot of STUFF.  Stuff to deal with, stuff to do, stuff forgotten, stuff that seemed to take up every waking hour of my days and often seep into my sleep at night.  I think some of it probably has to do with a constant underlying state of anxiety in my life.  Anxiety about Bean, anxiety about work, anxiety about finances, anxiety about my anxiety.   It really starts to get exhausting after a while.  In addition, I have heard of "mommy-brain" before, but I think I have a really, really bad case of it.  I literally can't remember things from one minute to the next...and it isn't just when my mind is on other things - it happens all the time.  I started to keep a list of things I needed to do, but I would literally forget where I put the list!  How sad is that?  So, I was feeling overwhelmed, disappointed in myself and just not seeing what I could "resolve" to do to fix all of it.  So, instead, I'm just going to resolve one thing - recognize the things I accomplish each day.  Some of them are sure to be tedious - I give Bean her meds each day, I change diapers, I get her dressed and redressed, I pick up her messes, I take her places, I play with her, I sing with her, I read to her.  I also do a few other things pretty regularly.  I get groceries, I do laundry, I sometimes even cook a meal here and there.  I grade papers, I prep for classes, I go to meetings, I do paperwork (lots and lots of paperwork it seems), I chat with students, I go to speech and debate tournaments, I may even do some research for speech and debate every once in a while (though not very often anymore it seems).  I feed the dog and cat, I scoop the cat box, I clean the house (or at least parts of it that people will see), and sometimes I even do some decluttering. 

So, if I do all those things, why do I feel like I don't accomplish anything?  Part of it is that I think our society thinks in terms of what I would call "big ticket items".  I could tell when people asked what Bean got for Christmas from us that they were a little disappointed in our answers.  Since she doesn't really "get" Christmas yet and we knew that the grandparents would be doing some purchasing on her behalf, we went pretty small this Christmas for her.  I bought a lot of things at the $1 store for her to open (because at her age, this really is more than half the joy) and some Christmas PJs and a thrift store purchase of a Disney wordbook (she is currently infatuated with the Mickey Mouse Clubhouse on Disney Channel - all things Mickey warrant a big smile and possibly a Hot-Dog dance).  She was thrilled with all of them, but some who asked what she got seemed a little let down.  I'm sure they didn't mean to sound that way and in the end with all the relatives and friends, she ended up with a lot of great gifts (a number of Leap Frog items, including a Leaptop so she can sit on her laptop like Mommy and Dada!) and stuff to last her a year, even though she has a birthday coming up in less than two months!!!  Anyways, that was a long way of saying that we have come to expect big ticket items and only those are meaningful or memorable in a lot of instances.  And I feel like my life's accomplishments are not filled with big ticket items - its filled with a lot of little $1 store items - they fill up a basket cheaply and quickly, but their effects often don't last long.  By the end of a day, I don't feel like I've done much - sometime even at the end of the week, I can't find anything really memorable or meaningful that I've accomplished.  But, when I think about it, my giving Bean her meds, as mundane as that may seem, is actually a life-saving action.  Getting her blood draws (on a weekly basis this month) is keeping her healthy.  That's a pretty big ticket item!  And my doing the paperwork at school means that over 25 students get to travel to tournaments and experience competitive speech and debate.  That is pretty meaningful for some of them.  It doesn't seem like the paperwork matters, but what it is tied to definitely matters.  And although cleaning and doing laundry isn't very sexy and grading papers isn't exactly life-changing, it all adds up in the end.  I would like my focus this coming year to be one in which I recognize these accomplishments and give myself (and others like me who are doing these things) some credit.

If you would like to join me in this effort, please do!  You can comment on this post letting me know you are "in" - and you can start doing your daily recognitions tomorrow.  I may even try to put together a "button" for those taking part.  I won't be laundry listing my little $1 store accomplishments each day on this blog.  I will probably start some kind of "Recognition Journal" and this blog will serve as a place to share any big ticket items that arise as well as a place for reflection and encouraging others to recognize their accomplishments as well.

So, 2011 will begin for me with a messy house, a new class prep for next semester and grades to enter for the Fall semester.  But, those are all just things that will serve as possibilities for recognitions now - they are opportunities rather than disappointments!  Its all in our frame of mind...right?

A Very Merry Christmas...

Well, maybe this picture is not the best representation of a Very Merry Christmas...but, really it is.  Bean freaked out a bit for her Santa visit - to be fair to her, we had to wake her up from a deep sleep to get the picture.  But, at least we have one this year.  Last year, we missed out on Santa because of her immunity system.  This year, we felt much more comfortable since she's been really healthy and we went to a relatively small-scale Santa for the visit (no mall - just a light show that Orland, CA does every year called Avenue of Lights - it was great). 

I must admit that the last few months have been a little overwhelming for me.  I just haven't been able to get a handle on things - grading, class prep, housecleaning, appointments for Bean, etc.  It just all seemed to kind of pile up and I could never dig myself out.  So, I was very happy to see the semester end if for no other reason that it would give me some time to get caught up and maybe even relax a bit.  The relax part has not really hit yet because we had so much to do for Christmas prep - getting a tree, shopping, decorating the house, etc. - which was fun and turned out really well, but has still created a long list of to-dos since school ended. 

The last month has been pretty good for Bean medicine-wise.  She is now down to only four medicines in the a.m.!  That's right - only four!  I believe we started out with nine and we were still at seven up to a few weeks ago.  But, she is no longer on the Predinisone, which meant she could come off the Pepcid (which she took because Prednisone often causes stomach problems), and she has stopped taking Lasix!  It seems like something is missing each morning now, but what a relief to see her come off of some of the meds.  So, our drug regimen is now:

8 a.m. - Prograf, Cellcept, Diltiazem and Magonate
2 p.m. - Diltiazem, Magonate and Lipitor
8 p.m. - Prograf, Cellcept, Diltiazem Magonate, Septra

Pretty simple compared to where we began just over a year ago!  We are still playing with the Prograf levels and she is currently getting weekly blood tests to try to get the level where it should be - we've gone up, we've gone down, back up again one time a day, back down again.  Hopefully we can get it figured out..but, until then, we just have to get blood tests and change the amounts.  In addition, we are on a break from her Periactin, seeing if cycling off of it and coming back to it next week might jump start her appetite again.  We'll see...

She has not grown as much as I had hoped.  She is still wearing mostly 9 MO size clothes and still fits in some of her 6 MO pants.  I am hoping she will be at least in 12 MO clothes by the time she turns two, but we shall see.  We have an appointment with the endocrinologist at Lucille Packard in February as well - to get her checked out for growth and make sure everything is okay in that department.  She also has a biopsy in January.  So, not much of a break in the medical department for us, but at least I'm not teaching for the month of January, so its easier to schedule travel, etc. 

We're excited to have Christmas at my parents tomorrow - Bean still doesn't really get the whole Christmas thing, but she loves tearing into paper and says a great "Wwwwoooowww" when she sees new things in a box or bag, so it should be fun.  I will have some video rolling and will hopefully post something for you in the next week. 

I hope everyone out there has a great Christmas and gets all the gifts they need and want.  My thoughts and prayers will be going out to our donor family this holiday season - it must be a devastating time of year.  I hope they can take some comfort in knowing that they have given this family the only Christmas gift that they would ever need - the health of our daughter.  We love all the other gifts, but this is truly more than we could ever ask for or expect and it came from a stranger.  Please remember that and send a good thought/prayer out to all the donor families who must deal with their loss this holiday season.  And if you have not already, please consider becoming a donor and giving the most amazing gift out there...the gift of life.

Merry Christmas and to all a good night!

Sue, Jason and the Bean...

NIH Research Improving Hopes for Infants and Toddlers on Transplant List

This is a good informative article on how CHD's and small children waiting for transplants are driving research in new Ventricular Assist Devices (VADs) that will work for smaller children. Bean was once a candidate for having to go on the Berlin Heart, a VAD that is not fully approved by the FDA, but is often given a "compassion" waiver to be used on smaller children because there are no alternatives in the U.S. at this point. Luckily, Bean improved before that happened - but other children need options available and this research is a hopeful look at some options. There are some links at the bottom for more information on the NIH program for devices as well as NIH information on CHDs.

Heart Pumps For Kids - Health News Story - WSOC Charlotte

The Giving Spirit...

This story from GA really touched my heart for a number of reasons. First, I am pretty sure that Bean's donor heart came from a child who had contracted meningitis (from the post-transplant infectious disease follow-ups). Second, the fact that a family could lose a child, make the difficult decision to give the organs to allow others to live, and then continue to give each year through these stuffed animal deliveries is a testament to the amazing capabilities for giving that is part of the human spirit!

As we enter this season of giving, this serves as a reminder of the truly meaningful gifts that we and others are given daily that we not always remember - healthy children, homes with warmth and love, family and friends who support us, and strangers like the Wildes who give to others not because they know and love them personally, but because they are empathetic to their situation and see a need.

Smart pill technology for transplant recipients

I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry. I have a seen a few conversations about rebellious teens who refuse to take their medications and parents wondering how to be sure they have on a daily basis. I actually have a student whose friend just had to get her second heart transplant primarily because she decided she didn't want to take her meds for a while during her teen years. I hope we never have to go through it, but I am given hope by this article on a new technology that allows doctors to know when patients have or have not taken their meds:

amednews: Smart pill technology on Novartis radar :: Nov. 23, 2010 ... American Medical News

The article introduces the dissolvable microchip that is in the drug - when the pill dissolves in the stomach, the chip sends a message to alert those who need to know that the pill has been taken and digested. I'm sure there are parents out there on some of the lists I am on who would love to have an email each day that lets them know the pill has been taken! Just a sense of relief if nothing else.

Novartis is planning to introduce it in their transplant medication (it didn't seem to list the medication in this article), and then future applications may be used in cancer and cardiovascular drugs. Technology is sometimes scary, sometimes amazing, but I must say that I am so very thankful there are people out there doing research in how to use tech effectively in health care - obviously, Bean's life depended on a lot of that technology (and will continue to for the rest of her life). It gives me a brighter hope for the future and alleviates some of that future worry I try to avoid!