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!

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!