Wednesday, November 23, 2011

Thankful Thursday: 3 West, Lucile Packard Children's Hospital

We're back.  We have been lucky enough to stay out of the hospital since January of 2010, which for a young heart transplant recipient, seems to be a minor miracle.  But, our hiatus is over and we are back on "3 West" - or as those in the PICU and CVICU know it, the "step down" unit.  We are in the room next to the room we were in when Bean came here post-transplant, and I had to catch myself from walking to that door instead of our current room the first night.  Because although it seems like a long time since our last visit, it also seems like it was just yesterday.  Some of you may already know why we're back here because you are facebook friends of mine, but for those of you who aren't, let me give you a quick fill-in:

Bean had her regularly scheduled biopsy Tuesday morning to check for rejection.  Everything seemed to go very well and we were discharged around 12:15 p.m. and headed out to the airport to pick up my husband, who was flying in from a business trip in Chicago.  By the time we had done that and been on the road for about 45 minutes, she threw up all over the back seat of the car.  We stopped quickly at the next exit (again, my sister Dawn took one for the team - it was her car and she had gotten up at 4:30 a.m. to help me out by driving and going to the biopsy with me...what a thanks that is we gave her...) and cleaned it all up and changed Bean's clothes and were back on the road.  We got to my parent's house about 25 minutes later and gave Bean some water and tried to calm her down.  I noticed then that she felt quite warm, so we took her temp and it was right around 101.5!  The discharge sheet for biopsies say to call them if they develop a fever over 101, so we called.  After a few calls between the heart center, the surgeon and the transplant team, we were told to head back in for overnight observation.  She threw up twice more before arriving at the hospital. Since then, we have found out she has pneumonia and we will be here until at least tomorrow.  So, our Thanksgiving 2011 is being spent in "3 West" of Lucile Packard Children's Hospital (LPCH).  We are very thankful for LPCH, but not very thankful to be spending Thanksgiving here!  The real kicker is that my JP (my husband) has gotten sick (cold) and can't come to the hospital now because this wing is full of immuno-compromised kids.  So, I am at the hospital with Bean solo today.  A good friend was so good as to bring by Thanksgiving dinner from Boston Market for me at lunch and the hospital has a special dinner for Thanksgiving tonight as well.   So, I'm well taken care of food-wise and it was great to socialize with someone who isn't two years old and whiny and sick!

"3 West" is an interesting place.  As I said before, it is the step down floor for the PICU and CVICU, so there are always a number of transplant patients - new recipients, those waiting for transplants and those like Bean who are in here a number of months/years post-transplant due to other complications.  There are also those with surgical heart repairs healing, lung and respiratory issues, and other medical issues.  There are very small babies all the way up to teens.  There are very vocal patients (not unusal to hear the belligerent screams of toddlers or preschoolers dealing with nursing visits, needle sticks, etc.) and very quiet patients.  There is constantly traffic through the halls as a lot of patients are told they have to walk around in order to get discharged.  Many are dragging IVs or carrying drainage tube containers or feeding tube bags.  Some are being towed around in red wagons by parents and still others are being carried by parents.  Many are wearing masks due to their immune systems being compromised.  I must say that most people look exhausted.  It is exhausting on this floor.  In the PICU and the CVICU, the nurses are assigned one, maybe two patients.  Here, they are typically covering two or three rooms and their job is to make sure that parents and caregivers are ready for what they will experience at home.  So, they encourage parents and caregivers to do the work - feedings, diaper changes, giving medicine, etc., but they are having to do a lot of training.  And there are sleeping couches in each room because unless you have a very good sleeper and/or feel comfortable with the possibility of them crying or being uncomfortable until the nurse checks on them (versus the nurse being in the room with them as in the CVICU or PICU), you really need to plan on being here overnight.  Its not a great place to sleep, but it is better than a chair.

I never sleep really well when I'm here because there are constantly people in and out of the room or Bean wakes up and cries a bit, and I feel like I need to comfort her immediately (how horrible it must be to wake up in this room with an IV in your arm and now oxygen in your nose?).   So, I'm up and down all the time.  But, the nurses are usually very nice.  They try to be as quiet as possible when entering, doing their work ups and exiting.  The first night, the nurse brought me cookies.  They always ask what they can get for you.  So, although they are training you for dealing with the realities of your medical situation once you leave the hospital, they are very supportive and nice about it.  And with us, there really isn't any training going on, because we have our routines down for giving meds and I've dealt with just about all the possible things (keeping diapers for weighing, keeping track of liquid and food intake, where the extra blankets and pillows are located, what all the machines are and what the different alarms mean.  The only thing I had forgotten is how to disable the alarm on the IV machine, but that has now been refreshed!

Overall, LPCH is pretty good place to be if you have to be in a place like this. I'm thankful this Thanksgiving that we are lucky enough to have a team of doctors and nurses looking after Bean's health and although I would much rather be visiting my in-laws this week and eating too much for my own good and then eating more...I am happy that we have access and ability to have Bean here and to be sure that her health remains as good as it has been.  We hope to go another two years (or maybe even more) without an overnight stay in 3 West, but if it turns out that we have to be here again, we will accept that.   Taking care of Bean's health  is priority number one for me.  And this place seems to do it right.

We did get some great news today while sitting in this hospital room - the biopsy result was another zero!  That was two in a row now...for the first time since transplant!  This could mean that Bean's immune system will be weaker (since it is a sign that the anti-rejection drugs are suppressing her immune system a bit more effectively now).  Which means we will have to be a bit more vigilant when dealing with any health issues around our house.  But, we'll take that...and take the zeroes!

Hope everyone out there had a good Thanksgiving!  

Friday, November 18, 2011

Fantasy Land Friday - From Transplant to Triathlon

I originally came up with the idea of a Fantasy Land Friday post to identify all those things I wish, hope, yearn, and/or envision for my life. For instance, a clean house or a completed to-do list. Anyways, you get the idea. But, this first Fantasy Land Friday post will focus on something a bit different. I don't spend a ton of time thinking about Bean's long-term future. I don't know if that is normal or a result of fear or denial or just the result of my seeming inability to plan ahead for anything. I also think that its difficult at this point because she's only two and I don't know what her interests or talents are yet. But, I'm sure that part of it is fear of the future and what it will bring.  Because of that, I love stories like this one:

Transplant recipient in second Ironman - Sherwood Park News - Alberta, CA

There are a few things I love about his story.  First, his transplant was back in 1986, which is pretty early in the transplant history, so long-term survival was usually predicted to be shorter than today.  He says that they gave him 10 years, and now, almost 30 years later he is competing in Ironman triathlons!  The second thing I love about his story is his willingness to be a "guinea pig" so-to-speak for figuring out the amount of stress a transplanted heart can take.  I would love for Bean to do sports - not necessarily Ironmans, but some kind of sport and if she decides she wants to do a sport seriously, I would love for her to have confidence in being able to do that.  The last thing that stood out for me was his recognition that many recipients never get the chance to meet their donor family.  The media typically covers stories that include both the recipients and the donor families.  Everyone asks about the donor...and its strange to know absolutely nothing...and hard to explain, but totally understandable from my perspective.  But, perhaps at some point in the future, we will come to know more even if we never meet the donor family.  And even if we never know more, I will always hold that family and their angel donor in my heart.  And I will try to make sure that Bean does the same.  I could not help but think that a boys suicide 30 years ago has given this man a chance to do amazing things and something that seemed hopeless and senseless has become something so full of hope and so meaningful.

So, here is something inspirational that I will definitely have Bean read in the future.  Its a great story - hope you enjoy it as much as I did!

Thursday, November 17, 2011

Thankful Thursdays - Aunt Dawn

Taking Starfish and "Bat Ray" out for a stroll.
Above is Bean, last weekend, with the stroller she conned my sister into buying for her while looking for shoes and the rubber starfish and manta ray they got at Michael's.  My sister, Dawn, was taking care of her so I could travel south for a speech and debate tournament.  She was supposed to be going with me, via car, but we had a rather traumatic end to that idea - which included Bean being locked in a car for about a 1/2 hour, having to be removed by AAA coming to pop the lock.  Embarrassing, yes.  Not as scary as it might sound because Bean loves to drive the car, so she spent most of the 1/2 hour doing just that, snacking on yogurt snacks she pulled out of a bag I had packed for her, etc.  She got a little upset towards the end, but overall she handled it relatively well.  I, on the other hand, had a slight breakdown after we got her out and decided I couldn't really deal with the drive to Southern California.  So, my sister volunteered to keep her for the weekend.  

Dawn has been a lifesaver this year.  With my travel schedule often colliding with Jason's travel schedule, and Bean being at an age where hanging out at a speech and debate tournament all weekend is not all that exciting, there has been a number of weekends where we needed someone to watch the Bean.  And it makes it nice that Bean loves Aunt Dawn - they go to the park, lots of walks and she usually gets to go see Grandma and Grandpa (my parents) while visiting her, they've gone to the zoo, the insect museum at UC Davis, and lots and lots of parks.  I realize that Bean is not an easy child to take care of - she takes multiple medicines multiple times every day (she is much better at this - she often gives them to herself with a little help now), for a while she was snoring like a chainsaw during the night (this has also gotten better - we now think she had a bit of a respiratory infection because once she got on antibiotics, she is sleeping so quietly we often have to check to make sure she is breathing regularly), she is about as belligerent as they come (she is in that stage where she says no to everything - and she has now taken to throwing things when she gets frustrated).  But, Dawn has never complained.  She always says she is good.  She never says anything about her not sleeping well or hogging the bed or kicking her while she is sleeping.  She deals with the fact that I am often an organizational mess and forget a coat or the right shoes or pajamas.  And she never asks me for anything in return.  Its really something that I don't take for granted.  It makes my life so much easier than it would be if I had to take her with me to all these places or find child care for a whole weekend.  

So, today, in honor of what I will call Thankful Thursday, I would like to thank my sister for all she does and all the love she showers on Bean.   As Thanksgiving approaches, I have been thinking about the many, many, many things I have to be thankful for, but this one really jumped out at me as I looked at the picture of Bean above.  So confident, so happy...with the stroller, starfish and bat ray that Aunt Dawn got for her while spending a weekend taking care of her to make my life easier.  Thanks doesn't go unnoticed!

Monday, November 14, 2011

Life is hard....dinner shouldn't be! (Review)

I am constantly struggling with time.  Time to get my work done.  Time to spend with Bean.  Time to do things that I like to do.  Heck, some weeks, I struggle to find time to take a shower!  Because of that, and a little bit of being intimidated by cooking, I am a huge fan of convenience foods.  I often teach classes in the evening or even late into the night and having something quick to fix when I get home is a great benefit.  So, I was excited when I was asked by SocialMoms to test out a new Smart Ones product from Weight Watchers and blog a review! 

I've eaten Smart Ones boxed meals off and on for a while, so I was surprised when I saw the packaging.  The new Smart Ones Satisfying Selections come in a steam-in bag.  Its a pretty large size (see the 30% larger serving note on the packaging) and although the varieties are currently a little limited (there are five varieties available), all of them sounded delicious to me.  I received coupons for two free bags and I chose the Ziti with Meatballs & Cheese and the Chicken Teriyaki Stir Fry.  I was excited to try the Ziti as the picture looked cheesy and had numerous meatballs.  The ease with which I was able to heat it up in the microwave was GREAT!  There was no stopping in the middle, lifting the plastic cover, stirring the product and placing it back in the microwave, only to find that I didn't stir enough so the middle was cold and the outsides were burnt on to the edges.  Instead, you just place the bag in the microwave with the steam side up and start it, not having to stop until its finished.  No stirring.  No dealing with unevenly cooked food.  Just place the bag in the oven and let it steam!  It was, by far, the easiest cooking of a frozen meal I've done.  And I've cooked my share of frozen meals!

Now, I don't know about you, but often the pictures on the packaging for frozen foods are about as close to reality as the shows I watch with Bean on the Sprout network!  They look so appealing when you pull it out of the freezer, but once the box is removed, all appeal is lost.  That was not the case with the Smart Ones Satisfying Selections.  The ziti came out looking like fresh pasta, there were tons of meatballs and the cheese was plentiful as well!  And the taste was very good as well.  I have to admit that I was starving when I made it, which I suppose could influence my opinion of the meal.  But, the meatballs were tastily seasoned, the noodles were soft and fresh and the cheese was plentiful.  It wasn't the best ziti I've ever had, but it is definitely the best tasting frozen food pasta entree I've had.  And again, I've had my share of frozen meals!

I had the Chicken Teriyaki Stir Fry the next day for lunch.  It was also tasty, although not quite as good as the ziti.  The flavor was not quite as good, but the chicken was plentiful (increased protein portion is one of the perks of these selections), the noodles seemed fresh and evenly cooked and there were quite a few veggies in the mix.  I just found the sauce to be a little lacking in taste.  

I have lost about 14 pounds since the beginning of Summer (thanks Hungry Girl) and I was also excited to have new options in the frozen dinner area.  It seems lately that the boxed varieties have shrinking entrees and just are often not that satisfying.  But, these meals are definitely larger (30% larger) and more filling than the boxed varieties I've had lately.  I had a slice of bread with the ziti for a late dinner and it was enough for me to not feel hungry.  The teriyaki at lunch was a pretty perfect lunch portion as well.  For those of you on Weight Watchers, the teriyaki chicken is a 9 point meal and the ziti is a 10 point meal.  Not bad for pasta dishes!  Especially the ziti, which I thought was quite cheesy.  

I would definitely suggest that anyone looking for a good frozen meal that won't kill you in calories to check out the Smart Ones Satisfying Selections! 

This post is part of a SocialMoms product evaluation, for which I’ve been
selected. I’ve been compensated for my time with 6,000 My SocialMoms Rewards
Points. The opinions expressed in this post are mine and don’t necessarily reflect the
opinions of SocialMoms or Heinz.

Thursday, November 3, 2011

Happy Halloween Week!

This is coming a bit late, so I'll call it Halloween Week.  I feel like a broken record sometimes, but I've had such a busy couple of months that I am feeling constantly buried.  Too much travel for work means no weekends at home to get caught up with things...a wicked, nasty case of strep throat followed up by a chest cold has not helped things...and seemingly a ton of things to get do get done in our personal lives.  Its all a bit much sometimes.  But, I seem to have been able to fight off the latest cold and Bean has amazingly not caught any of the bugs that have been moving through my classes, team and our home!  Thank goodness.  

As you can see from the picture, Bean went as a purple butterfly for Halloween this year.  She refused to wear her antennae, so she looked more like a ballerina with wings, but it wasn't worth the fight.  She loved trick or treating, saying "more candy" after we left each house.  It helped that we don't have many trick or treaters in our neighborhood so people were more than happy to give her multiple pieces of candy.  She doesn't really eat the candy, so I'm not sure why she was so demanding of more, but she loves to dump out her bag and look at all the different kinds of candy she has. And the pile is slowly disappearing, thanks to those of us around the house who would rather eat than look at it!  :)  

Bean is very much into Music Together class right now.  We dressed up at the last class and the kids were all very cute.  Here is Bean during the instrument play part of the class:

We missed out on the downtown Treat Street festivities because she fell asleep on the way there and proceeded to nap for two hours.  Oh well...maybe next year.  She also refused to have her picture taken with the extremely cute backdrop the Chico Mothers Club had at the Halloween Party.  Sad, but true.  

I can't believe it is November already.  I have the Great Debate all day tomorrow at City Council Chambers, we go to Northridge next weekend for our last tournament of the semester, and then the Rookie Tournament and Nervous Novice Tournament on campus the first weekend of December.  I'm exhausted thinking about it, but such is life.  

I am looking forward to the week off for Thanksgiving, but Bean will have her biopsy at Stanford on Tuesday of that week, so it won't be a total week of peace.  Hopefully things go smoothly for the biopsy and she isn't too upset by the whole experience.  We still haven't settled on a plan for Thanksgiving and Christmas and where we'll be and for how long...another challenge to figure out in the coming weeks!  

I hope all of you had a fantastic week, whether celebrating Halloween or just getting ready for the coming holidays!  Its just starting to get cold (and maybe even some rain) here.  I'm ready for the season change - looking forward to dressing warm, watching all the leaves turn, and even some rain!  I'm sure I will be complaining about it in a few weeks, but for now, the change sounds good!

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...