Monday, August 20, 2012

A little lighter...A little quieter!

Bean is a little lighter and a LOT quieter sleeper now that her tonsils and adenoids are out.  She did pretty good over all.  That picture to the left is her pre-surgery after they had given her some Verced.  She gets mighty happy when the Verced kicks in!

The surgery went smoothly and we thought we were going to have the predicted 24 hour monitoring and release, but no such luck.  Her oxygen saturation was really poor post surgery even with receiving oxygen through a nasal cannula.  So, the first night they had to put an oxygen mask on her,which really ticked her off.  She woke up screaming and grabbing at the mask every 15-20 minutes throughout the night.  And the next day, she looked like this (with her new hammerhead shark puppet from Aunt Dawn):



During the day, she had to keep oxygen going through the cannula at a pretty high rate, but she didn't have to wear the mask, which was good.  She gradually started coughing more and clearing out some of what was in her lungs, but it was obvious we weren't getting out of the hospital in 24 hours!  She stayed on the cannula until this morning (surgery was Friday morning - so almost a full 48 hours of oxygen support was needed) and although she is still dipping down into the high 80s for oxygen while sleeping, she usually recovers back up into the 90s quickly and the ENT doctor said it was probably still much better than she was before, so he wasn't too worried about it. So, we are still here in the hospital for one more night for observation now that she doesn't have oxygen support - so far she has dipped into the 80s a few times, but has almost immediately recovered into the 90s (sometimes it takes a cough or two) each time.  So, we should be out early tomorrow morning (early in hospital time, as it seems like discharge always takes hours to complete) and back home in Chico tomorrow with a much quieter sleeper!

I am also hoping that her growth takes a jump now that she isn't having to work so hard every night in her sleep.  We shall see if that part actually comes to fruition.

Because of the heart valve issue (which seems to be working "beautifully" according to the transplant team last Wednesday), she will have her annual biopsy late (usually it takes place right around the heart birthday, but they are moving it out to March or April to give her a break after the heart valve surgery and this surgery) and then we will move to a once a year schedule to try to avoid any more accidental bumps - the less biopsies, the less chances for bumps.  I'm happy about that.  Even though she has had some issues with low-level rejection, her prograf numbers have been pretty predictive of the issues (good numbers = good biopsy results; bad numbers = worse biopsy results), so I think as long as we are on top of her prograf numbers, we should be okay.  It was a little low a few weeks ago, so we had it rechecked last week after an increased dosage and the numbers were back up in goal range and they did a draw yesterday here at the hospital and it was on the high side of goal range.  So, that is looking good.

Overall,  I'm really going to be focused on getting her on a better sleeping schedule now that her sleep should be better.  And in the interest of that, I will be trying to build a better schedule around the sleeping as well.  She's very good at remembering things, so I think if we had a basic outline of a day for her, she would remember it well from day-to-day and probably be happy to follow along.  Now, if only we can do the same!

Hope everyone reading this is doing well!  Thanks for following our story!

Thursday, August 16, 2012

Tonsils and Adenoids are Coming Out...

I am hoping that tomorrow's surgery will be Bean's last surgery for a long, long time and I hope that it makes her feel like she looks in this picture.  Tomorrow, we are scheduled to have her tonsils and adenoids removed because of her severe sleep apnea.  For those of you who have followed her story, you know that we were at the pre-op appointment for this very surgery when they discovered her tricuspid valve leakage and resulting fluid in her chest cavity, which started us down the road to the open heart surgery that she had in May.  She has now recovered from that surgery and yesterday she got a good report at her clinic visit and we are ready to move on the tonsillectomy.  I was shocked that they were able to get it scheduled only two days later, but happy to have the chance to get it done before my Fall semester begins and mine and my husband's work and travel kicks in to full gear!  It sometimes seems cruel to put her through yet another surgery, but there are so many reasons to get it done that I just have to go ahead and do it.

For those unfamiliar with sleep apnea in children, here are some symptoms (I have identified the symptoms that Bean suffers by bolding them):

  • Snoring
  • Long pauses in breathing
  • Much tossing and turning in bed
  • Chronic mouth breathing
  • Night sweats
These symptoms can lead to some pretty big impacts, especially if it is let go for the long term.  Some of which we already see in Bean (again, I used bold to indicate the symptoms we have seen):

  • ADHD
  • Failure to thrive or lower growth rates
  • Sleep walking
  • Bed-wetting 
  • Hormonal and metabolic problems
So, we're hoping that getting the surgery now will stop any further cognitive impacts that may lead to ADHD in the future (and she may be a little hyperactive now, but its difficult to tell with a 3 year old).  We're also hoping it may get her growing faster and maybe even eating better.  Sleeping better will be a boon for all of us.  I am not looking forward to another surgery, but I am looking forward to improving her health!

The surgery is relatively easy and short (compared to open heart surgery, most are).  But, because of her health history, we will have to stay overnight in the Pediatric Intensive Care Unit.  I am hoping that all goes smoothly and it really is just a 24 hour stay.

The summer has been pretty good since she recovered from the surgery (I would say she started feeling "herself" around the end of June, beginning of July - it was a long recovery - more mental than physical I think).  She has gone to Monterey Bay Aquarium twice, went on a week long "camping" vacation in Chester, CA near Lake Almanor (we stayed in a cabin), and spent a lot of time at my parent's house, where she gets treated like a princess.  But, she is also looking forward to going back to "playschool" and seeing all her friends there!  Sorry I have been so bad about updating the blog.  I always say I want to make it a priority, but it always falls down the list.  Again, I will try to keep it updated more often!

Here are some pics from our summer adventures!

Playing in Chico's downtown fountains

Swinging at the park by Grandma and Grandpa's

Juniper Lake in Lassen National Park

Mom and Bean's feet

Bean's feet

Being a princess at Grandma and Grandpa's - literally!

Enjoying some fireworks on the 4th of July, with Daddy!

Spending some time with her favorite Uncle - Jeremy!

Enjoying the pool at Uncle Jeremy and Aunt Sydney's new house!

Warming up after the pool!

Under a turkey at Bravo Farms coming back home from Papa and Gigi's

Swimmin' with Aunt Dawn at the hotel at Monterey Bay Aquarium

Looking at a tiny, tiny starfish with Grandma at Monterey Bay Aquarium

Exhausted...

Playing in the sand at the park

Back to the downtown fountains...

Legos and Star Wars at Barnes and Noble...future Nerd Girl in action

Playing near the giant slip n slide at Chico's Family Night Out

On the slide at the park

Summer runnin' at the park

Spooning with Nosey

Tiny pool, big goggles!  A little swimming in the front yard.

Swimming with dino!

Tap dancing in a pincess dress.

On the boat in Lake Almanor with Gigi

Serious boating

And another summer comes to an end...



Sunday, June 17, 2012

Long Needed Update (may be long)...



I have started to post many times, but I got overwhelmed with all the information that I felt like I needed to share and stopped.  So, I'm going to try to make it through this post, even if it requires me to leave out some details.  If you have any questions, please feel free to email me or comment on the blog post and I will try to get back to you.  

So, let me try to start where details are necessary and move from there.  On March 28, I talked about her having the tonsillectomy scheduled, but as I discussed on March 27, the biopsy had a little snag and she ended up with an injured tricuspid valve.  Well, between the time of the biopsy and the time of the tonsillectomy, she had some health issues.  I got a case of the flu and I kind of thought she had caught it from me.  She didn't really run a fever much, but she was worn out, throwing up, seemed to be dragging.  But, she is three and can't explain how she is feeling much and she was still up and around like a toddler for the most part, so we didn't think much of it.  BUT...when we went in for the pre-surgery (tonsillectomy) check-up with the cardiology team, they did an echo and found that she had a significant amount of fluid around her lungs.  Not in her lungs, but around her lungs - its called a pleural effusion and they admitted her immediately.  She had to have a chest tube placed, she was put on lasix (a diuretic) to keep fluid from building up again and we were in the hospital for five days.  At that point, they spoke to me about the possibility of having to do surgery to repair the valve, but they weren't sure and when we got released they were going to "shop it around" to see what surgeons had to say about possible success, the likelihood of being able to do biopsies after the repair without ruining the repair, etc.  So, we went home without a tonsillectomy and on another medication (she was going home on Lasix).  The next week was frustrating for me because they wanted us to "watch for fluid build up" and I was worried we were going to miss it and constantly looking for signs of problems, etc. feeling like I should have noticed before we went for the pre-surgery check the first time.  But, the Lasix seemed to work and she seemingly was doing well.

We went on like that for a few weeks, and then we got a call in early May that the surgeons had decided the surgery should be done.  I was deflated to say the least.  Another open heart surgery...this time on a toddler instead of an infant.  Needless to say, I was not looking forward to it.  We were lucky enough to have the surgery scheduled for after both Jason (husband) and I were off work for the summer, but we were less than thrilled.  So, in late May, we decided to do something fun before the surgery and we went with my sister to Monterey Bay Aquarium for a couple of days prior to the scheduled surgery.  It was a great trip, but the impending doom hung in the air...at least for me.

We got back just in time for the pre-op appointment, which was less than pleasant.  Bean threw a HUGE fit about the EKG and I think she could probably feel my anxiety, which made it all worse.  I felt like I was putting her through torture and had a bit of a breakdown.  Luckily, my in-laws came into town for the event and were there for moral support.  The doctor who came in to speak with us about the surgery was less than optimistic about the surgery.  He said that she may need a valve replacement instead of a valve repair, which would mean getting replacements every 3-5 years.  Sigh...We somehow got through the day, found a hotel room in the area so we could be at the hospital bright and early the next day and tried to settle down for the evening.

The next morning was actually much better than the pre-op day.  The lead surgeon seemed to be more optimistic than the assistant who spoke to us the day before and was pretty resolved that he would not do a valve replacement unless it was absolutely necessary.  So, we handed her off to the surgical nursing team and went to wait...and wait...we got a visit from the nurse liaison about four hours after handing her off that she had successfully been placed on bypass (it takes a while to get in when they have previous surgery scars to deal with and from the looks of it, they had some issues getting enough access for IVs, IJ lines and an arterial lines) and they had started the actual repair.  It was another couple of hours before the surgeon came in and said they were closing her up.  He said the surgery had taken longer because they had tried a number of repairs that did not work before they finally were able to get the "last chance" one to work.  This repair was not optimal, and post-surgery he was afraid it may have tightened up the valve too much, making it "stenotic" and told us they would have to watch pressures for a couple of days to see if it would require them going back in to change it with a Glenn surgery.  All I could think was that they may have to do another open heart surgery in a couple of days?!?!  How is that even possible?!?!  But, I nodded my head as if I understood and listened to the rest of what he had to say.  A while later, we were called up to the CVICU to see her  It was hard to see her on the vent again, but she was able to weaned off of it in about 24 hours and this is what she looked like after that:



Luckily, the pressures were fine and actually reversed direction within a couple of days, meaning that her valve is continuing to leak.  Not as bad as before (before it was measuring Moderate to Severe and was well on the Severe end of things - now it is measuring in the Mild to Moderate and is on the Moderate end of things), but still there.  Her recovery in the hospital went relatively smoothly.  One of the nurses in the CVICU (where they are one-on-one with nurses most of the time) noticed her coughing after she drank liquids and suggested we get a swallow study done.  So, that was performed and we discovered that she, in fact, does have a problem with swallowing liquids.  She aspirated extremely badly in the swallow study.  We have always noticed her coughing after drinking, but I just thought she was in a rush...but, turns out, she has a swallowing issue.  So, we now have to thicken her liquids other than Pediasure (which she still drinks with a bottle nipple so flow is controlled).  It has made a huge difference, and I must admit that I felt terrible when I found out that we had basically been waterboarding her with every glass of water or juice we had given her in the last two years.  :(  But, at least it was caught (thank goodness for an aware nurse willing to ask for the swallow study) and we can fix the problem now.

We were in the hospital for eight days, which was actually not bad at all.  Since we've been home, Bean has really yet to become herself.  She is moody, often angry (which is not like her at all), not eating well, and often complains of pain and "being sick".  She has not been running a fever or vomiting, so I don't think anything is seriously wrong, but I do believe she has a lot of pain from coughing (she came home with some "junk" still in her lungs and she has been coughing ever since trying to get rid of it).  But, she is also a bit manipulative.  She uses the pain and feeling sick as an excuse to not do things she does not want to do or to try to guilt us into doing what she wants done.  Its an easy sell.  She's been through a lot.  Her bruises and incisions still are healing.  And I'm exhausted most of the time, so its easy to give in rather than fight the battles.

But, today, I have initiated a bit of a battle.  I told her that from now on if she complains of feeling sick, I will make her lay down.  And that we are back on our schedule for bottles, meaning she gets Pediasure at 10 a.m., 2 p.m. and 8 p.m. and must eat and/or drink water or juice in between.  This morning I told her if she did not eat because she didn't "feel good" than she could not go out and play in the sprinklers or drink a bottle or have a bottle because if she was too sick to eat, she needed to just lay down and rest.  I mostly did this because I figured it would snap her out of her not "feeling good" if she really felt okay and a little bit because I think she really does need to lay down and rest more often as she totally goes until she is completely worn out which adds to the moodiness.  And, you know what?  It worked.  She ate a great lunch of BBQ chicken, broccoli and a bread stick today!  First real meal she has had since the surgery.

So, after a long post, the short of it is that we are on the mend.  The summer has started off a little rough, but I am looking forward to making up for that with lots of activities and fun stuff as we find our new normal once again!

Thanks to everyone out there who kept us in their thoughts and prayers during this time.  I'm so glad its over and I'm glad she is doing better.  Fingers crossed the repair holds for a long, long time and we can go many, many more years without another open heart surgery!

Monday, April 9, 2012

H is for Heart Transplant: What a different three years can make...

This was Bean three years ago this month.  Its tough to look at that picture.  At that point, Easter 2009, we were still in the hospital in Sacramento and they weren't quite sure what was going on - just that her heart was five times the size it should be and she was not responding well to the IV meds they had her put her on.  We spent that Easter in that hospital room.  I still have a coffee cup and stuffed bunny they brought around for all the parents and kids in the ICU.  That week was probably one of the hardest of my life.  Everything was so unclear and it just didn't seem like anyone could tell us exactly what to expect.


This was Bean yesterday - Easter 2012.  What a difference three years and a heart transplant makes! Bean got her new heart about three months after the above picture was taken.  We are forever thankful for the family that saw past their own grief to donate their babies heart to our baby.  We have not heard back from the donor family and we may never hear back from them, but hopefully they took some solace in knowing that they saved a life...perhaps many lives (if the other organs found homes in other babies).

But, I thought some of you might be interested in our learning more about heart transplants.  So, that is the subject of the rest of this post.

A heart transplant is an open heart surgery where a diseased heart is removed and a healthy heart from a donor is sewn into place.  Heart transplantation is only about 50 years old, with the first one being performed in 1967.  The process has come a long way since then, and according to Wikipedia about 3500 heart transplants are performed annually worldwide in 2007.  Infant heart transplants are more rare and more recent.  According to the Loma Linda University website, where the first infant transplant was performed, the first infant heart transplant of a human heart was in 1985.  According to Medscape Reference 350-400 pediatric heart transplants (in children 18 or younger) are performed annually, so only about 10% of the total heart transplants done each year are in children under 18, let alone infants.  Because of the relative recency of heart transplantation in infants, the statistics on survival, complications, etc. is limited.  But, the survival rates for younger recipients seem to be better than older recipients, which maybe a reflection of their ability to adjust their immune response system better.

Bean received her heart at Lucille Packard Children's Hospital and according to their heart transplant page they lead the nation in survival rates for one- and five-year outcomes and they have the largest group of child recipients who have survived longer than 25 years with a heart transplant!  Pretty good statistics.

Bean is currently on a drug regimen that requires us to administer a number of medications every morning and every evening.  She started out post-transplant on about 13 medications, but has been weaned off of all but five of them!  She will probably be on these five for the rest of her life.  She takes two immuno-suppressants, one blood pressure medicine, one anti-statin (lipitor) and fluoride because our water does not have fluoride in it.  All of them other than fluoride are liquid and are taken with a syringe - we draw up a measured amount and she takes it in her mouth.  The fluoride is a chewable.  She will, at some point, be able to switch over to pills, but for now, it is liquid and she has adjusted to taking them just fine.  Other than that, we have to get blood draws done to check her immuno-suppressant levels every once in a while.  We have to drive about 4 hours to get to Stanford for clinic appointments and biopsies to check for rejection about every three to six weeks.  Overall, her life is not that much different than any other three year old.  But, she is at risk of getting sick easier and staying sick longer, she obviously has ongoing medical appointments that others would not have to deal with and she suffers from some side effects of her medicine like diarrhea and stomach issues.

Overall, I can not think of a better outcome than we've had, considering how very sick she was as a baby.  I am so thankful that heart transplants have become as successful as they have for infant recipients and I'm thankful she was able to get a heart when she most needed one.  And we will continue to do our best to be one of the positive statistical results of heart transplantation!

Saturday, April 7, 2012

G is for Gorgeous Day! (and Gigantic bubbles)

Today is an Instagram day.  I've just discovered it and I am absolutely loving it.  It was a beautiful day in our hometown today.  The sun was out, but it wasn't too hot.  It wasn't too windy.  And we enjoyed some outdoor fun.  This morning we went for a walk and found that someone's sprinkler system was malfunctioning and had created the best puddle.  So, we came home, donned the rain boots and went back for some splashing.  Even Bella, our dog, got in on the fun!


Later in the afternoon/evening, we got out one of Gigi and Papa's Easter gifts - a giant bubble making wand! It worked really, really well and we all had a lot of fun making gigantic bubbles in our front yard.  It took Bean a few tries, but she finally got the technique (lay the wand completely flat and then pick it up very slowly) and she got some HUGE bubbles on her own:


This evening, we decorated some eggs.  I used the idea from Wildink Press to bake the eggs in the oven rather than boil them and it was so easy!  I mixed up some vinegar, water and food coloring and then we decorated them with colored markers and glitter glue pens.  They aren't exactly museum-quality pieces, but Bean had a blast!


That's it for this gorgeous day!  We enjoyed all parts of it and are looking forward to fun visit to Grandma and Grandpa's house tomorrow and maybe even a visit from the Easter Bunny tonight (although the basket has yet to be built...better be getting on that soon...its getting late!).

Wishing you all a very Happy Easter and a great week ahead!

Friday, April 6, 2012

"Egg"cellent Easter Egg Hunt and Family Fun

Well, I've missed a few letters/days in the A to Z adventure, so I'm just jumping right in with "E" (yesterday's letter) and "F" (today's letter).  Not exactly what the monthly meme was designed to do, but I will have to go with it.

My local Chico Mothers Club had an egg hunt this week and we had great fun.  This was the first large character that Bean has been willing to actually touch and sit on their lap!  Usually she is really excited to see them until she gets up close and then she gets scared.  But, she climbed right up for the picture, although as you can probably see from the picture, she was not exactly confident in her decision.  She had fun with the Easter Bunny, but really liked the pre-bunny activities - playing in the park:

and of course, the egg hunt (not a challenging one because there were only 4 and younger there, but they had a blast):



The day was particularly special because Bean's "Gigi" and "Papa" were here for a visit!  So, we all got some special Family Fun time Easter-style.  The day was gorgeous.  The river was running fast after all the rain, but the sky was nearly cloudless for the egg hunt:


She spent time with Papa and Daddy...



And some with Gigi...


And some time by herself just enjoying the great outdoors...


All in all, it was a great day, especially after the last few weeks of illnesses, doctor and hospital visits, bad weather and just plain miserableness!  We were also able to enjoy the first of our Thursday Night Markets here in Chico.  We will celebrate Easter at her other Grandma and Grandpa's on Sunday with her favorite Aunt and hopefully her cousins.

I'm really happy to have had this time as her Dad is leaving again on Wednesday for work and then when he comes back we will be straight into the tonsillectomy/adenoidectomy, which will obviously have some recovery time (and a night in the hospital again) and some anxiety for all of us.  But, if it helps her sleeping become more consistent and restful (and possibly even give her a better appetite) and keeps all the ear infections at bay, it will be more than worth all of the hassle!  Fingers crossed.

For now, I leave you with the Bean readying herself for her day out...I think the smile says it all!



Hope you have a very Happy Easter or Passover or just a great weekend!  

Sunday, April 1, 2012

A is for Allomap Molecular Expression Testing

I have decided to participate in the Blogging from A to Z Challenge and since I have recently realized how much I DON'T know about heart function, heart diagnostics, etc. I have decided to use a theme of heart disease and  make it to treatment.  I will try not to boring and dry, and hopefully someone reading will find it somewhat helpful.

With our recent problems in the areas of biopsies  and the fact that she has only one access point for biopsies (as opposed to four), I've had a lot of people asking me about alternatives to biopsy.  One such alternative is the recent AlloMap Molecular Expression Testing - or the blood test for rejection.  Bean is not eligible for this alternative - one has to be at least 15 years of age.  So, she has a long ways to go.  But, I thought for those curious about this, I would share the facts as I know them.

Approved by the FDA in 2008, the test is designed to provide an alternative to invasive endomyocardial biopsy (what Bean gets) for those patients who are stable and asymptomatic.  The test only predicts probability of moderate/severe acute cellular rejection.  This is only one type of rejection.  The others are antibody-mediated rejection (AMR) and cardiac allograft vasculopathy (CAV).  The test can be used in conjunction with other clinical assessments (echocardiograms, EKGs and examinations) to judge whether an invasive biopsy is needed (negative numbers would be followed by a biopsy for more exact information).

The preliminary results of clinical comparisons between the AlloMap and biopsies is pretty impressive.  Over a four year period, from 2005 to 2009, the test was used on 602 patients in 13 transplant centers and results showed there was no inferior results when compared to biopsy for clinical outcome.  Now, all that technical language simply means that those having regular biopsies were no more likely to suffer acute rejection than those receiving the AlloMap instead.  Which is good news, but doesn't mean that this test does away with biopsies (because the way a patient is found to be stable and asymptomatic is through routine biopsies following the transplant - all the test subjects were at least six months post-transplant).  But, it will save individuals a lot of invasive procedures if they are doing well clinically and have no signs of rejection or other problems with the heart.

I would assume (although I don't know for sure) that there would still be a need for annual biopsies because it is during these that they test the elasticity of the arteries and other issues that are known to cause issues for recipients.  But, only having to have biopsies once a year instead of three times a year would be a very welcome change for us right now.  But, again, we aren't even in the running for this choice.  And I don't know if Bean's history of rejection (two 3s in the first year and a number of 1As post-transplant) would disqualify her as a candidate or not.  But, I guess I don't have to worry about that for at least 12 years.  I have spoken to a few people who are using this technique.  Some of them love it.  Some of them feel a little trepidation at trusting the results as much as they would a biopsy's result.

Anything that provides transplant recipients and their doctors more choices in treatment and evaluation seems like a welcome thing to me.  So, I hope that AlloMap continues to be successful and improve and maybe even gets approved for younger recipients so kids under 15 do not have to suffer so many of these invasive procedures!

So, that's today's A topic - AlloMap Molecular Expression Testing.  The information presented here came from the product's website and/or the wikipedia page for the product.