Not So Wordless Wednesday - Day of Doctors

Today was a long day of doctors and nurses at Lucile Packard Children's Hospital for us.  We started the day by getting up at 5:45 a.m., leaving my parent's house at 6:15 a.m., arriving at the heart clinic at 7:40 a.m....and then we waited a few minutes:

Bean was still in her jammies and she actually did much better today than her last few appointments.  She hardly cried at all upon arrival to the hospital (a few whines of "no hospital...no hospital" was about it) and she let herself be weighed (26.4 lbs.) and measured (34.5 in.) and pulse oxed and blood pressured with minimal complaint!  She was even good for the echo and although she did not want the nurse or doctor to "listen to heart," she offered up her ears happily for a viewing and finally allowed them to look in her mouth (for a very short time) and use the stethoscope to listen to her heart and lungs.  I was very happy with how things went for the heart clinic appointment.  Everything looked good other than her prograf level being a little low, so we've gone up on the dosage and we'll check it again in a week or so.  But, all her numbers looked good.

We had a three and a half hour wait between the heart clinic appointment and the ENT appointment, so we went to breakfast at one of our favorite spots - Hobee's.  It was so good.  They brought Bean a little fruit "face" to start the meal (I should have taken a picture, but didn't think of it), with banana and grape eyes, a strawberry nose, whipped cream cheeks and a cantelope mouth.  Bean ate it happily and had some toast as well.  Both Jason and I enjoyed their famous Blueberry Coffee Cake with our breakfasts and left happily full.  We walked around the shopping area once and then got back in the car to see if Bean would go to sleep.  Unfortunately, she was pretty wide awake and really wanted to go to a park.  I remembered a park we had visited a couple of times with Bella when she was in the hospital and we headed over there.  We ended up playing there for about 40 minutes and it truly made Bean's day.  She learned how to climb...and climb she did:

She had to work hard at it because her legs are really far too short to function well on most playground climbing equipment, but she followed instructions, kept trying when things went wrong and she made it to the top a couple of times!  She is not scared of much, but is relatively safe-minded in that she stops when out of her league and will take help when she really needs it.  But, when Jason tried to help her before she really needed it, she responded, "No Daddy.  I strong enough to do it."  It was very cute.  When we left there, we still had about an hour to kill, so we went across to the mall, got some Starbucks and walked around there for about 30 minutes.  After that we headed over to ENT.

The ENT appointment was pretty easy.  They think her tonsils look fine, but with her snoring, mouth breathing and the anesthesiologist saying she had large adenoids, they think it warrants a sleep study.  So, we will have to go over for an overnight stay, with Bean hooked up to a bunch of monitors for the night.  I'm not sure how that will go, but we shall see.  They will monitor all of her activity - breathing, brain activity, and a bunch of other stuff while she sleeps and then decide if there is enough of an issue to warrant taking out her adenoids or if we can wait it out a bit longer.  She is breathing so much better at night now than she was 6-8 weeks ago that I feel a little ridiculous now, but she does still snore every once in a while and she is definitely a big mouth breather right now.

Bean slept all the way to my parents' house!  She was exhausted.  But, I am so happy with her behavior.  I am hoping that we have passed the point where she cries and cries when going to the doctor!

Wordless Wednesday - Bean, Bat Ray, Bella and DaDa

I have neglected all of you lately, I know.  But, I have a new blog that is not Bean-related over at Make It a Girl's World if you would like to check it out.  I will continue to post Bean-related information here though and today, I am participating in the Wordless Wednesday meme.  Enjoy!

Meet Me On Monday

I spend most of the blog posts on here talking about Bean.  But, I decided to join in a little blog hop meme - "Meet Me on Monday," and write about myself instead.  I don't know if I will participate every Monday, but I have seen it a few times and thought the questions were kind of fun.  So, here goes:

1.  Tomorrow I'm going to _____________________.

Give my second final, among other things.  I have office hours at 5 p.m., but I need to get some grocery shopping done. I would like to make some cookies.  Bean has therapy...one of her last sessions, which I'm very sad about.  I also need to do some more cleaning around the house - the place has been a disaster pretty much since we brought our Christmas tree home and displaced a whole bunch of stuff for which I still have not found places.  I also have found some really cute Christmas crafts to do with Bean, but that may have to wait for later in the week...


2.  Pudding or Jello?  Definitely jello.  I like pudding okay, but jello is just better!


3.  What book are you currently reading?  I'm actually reading two.  The first was a book club book from about six months ago that I finally started and really like so far.  It's called "Angry Housewives Eating Bon-Bons" and the title does not do it justice.  It is about a book club in the early 60s and the lives of the women are fascinating and I love the book choices within the book.  The other I just started and is called "The Plato Papers" and is very strange but intriguing.  Somewhat post-apocalypse, somewhat philosophical, and sometimes kind of funny.  Hopefully I will finish them both before the year ends!  My book total for 2011 was pretty disappointing.  I would really like to read and finish more books!


4.  What is the first concert you went to see?  My dear sister (Aunt Dawn from a previous post) took me to see Bruce Springsteen on his Born in the USA tour.  I must have been a sophomore or junior in high school. Our seats were far, far away, but I still thought it was awesome.  


5.  What is your current weather?  To me, its cold, cold, cold.  But someone told me today that they were visiting family in New Mexico last year and it was 26 below zero!  What?  Its in the 30s at night here and gets into the low 50s at points during most days.  But, I lived in California my whole life, so I think its cold!  So far, not much rain though - which is a little unusual.


So, there you have it!  If you would like to participate in the blog hop, you can go to Never Growing Old's blog and get the link up information!

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!  

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!