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's story and hopefully inspiring some awareness about organ donation, but I stopped writing here when things calmed down a bit in Bean's life (and consequently my own).  Obviously, this was a bit of a coping mechanism with me early on and I felt like I didn't have much to say if I wasn't writing about medical procedures or milestones or such.  But, I've recently realized in being in some online groups for pediatric heart transplants that it is equally (maybe more so) important to mark those "normal" times.  Times when we go years without hospital stays (knock on wood).  Times when she runs 5Ks with Girls on the Run for multiple years.  Times when although she is taking medication twice a day still, it is easily transportable and doesn't change much over time.  These are the good times.  And they should be marked and remembered.  And they should be here for those who are just starting this long and scary process that often left me in a state of doubt. 

I don't have any doubts anymore.  We absolutely did the right thing.  Despite the fact that she has a leaky valve due to a catheter running into her tricuspid valve during one of the biopsies.  Despite the fact she has a pacemaker because her heart started some irregular beats a few years ago (perhaps because of that leaky valve).  Despite the days, weeks, really months we've spent in a hospital room, she is healthy and happy and absolutely amazing.  Like I said, she does 5Ks with Girls on the Run.  She does gymnastics and loves it.  She is an active Girl Scout and is in 4H.  She has tons of friends and no real restrictions.  She doesn't even get sick when we get sick nowadays!  She is the healthiest immune-compromised person I know (I don't know a ton of them, but she is healthier than a lot of the non-immune-compromised people I know).

I, on the other hand, am a bit of a basketcase.  I have realized only recently that I have been in a sort of PTSD fog for the last 10 years.  I was in survival mode and although I've made it through and even thrived for some of it, I can't remember much of it and often lack a total awareness of what I'm feeling and experiencing in life.  It is a strange feeling, moving through life without really experiencing it fully.  I just feel a little lost.  Sometimes it isn't as strong as other times, but it is always there.  That feeling of not really knowing what is happening or what will happen next.  And we've been on a relatively straight road for the past few years, but it is still there.  Every time she looks a little pale.  Every time we go to the heart clinic for an appointment.  Every time something happens that brings a bit of the unknown with it, I am in that slightly panicked but can't bear to feel the panic state.  Which makes no sense, but its the only way I can describe it.

So, for those parents out there who are looking at the beginning of this road and wondering where it leads, it leads to amazing things.  It is not an easy road.  There are constant worries and concerns (recently it has been measles scares since she can't be vaccinated for that), but there are also constant joys and celebrations. 

So, I'm back.  I'm back to record the good, the mundane (which is good for us in transplant land), and the struggles (because they are still there, just smaller and much more manageable).  Hope some of you rejoin me! 

"C" is for Catheterization

I can't believe I've already fallen behind in the A to Z Challenge. I guess that is why it is called a challenge though.  So, I will be playing a bit of catch up over the next couple of days.

"C" is for Catheterization - specifically Heart Catheterization.  Which is actually what my daughter had on Wednesday, the day this was supposed to be posted.  For those unfamiliar, heart transplants are monitored for rejection in a number of different ways, some more invasive than others.  Once a year, a heart transplant recipient receives what is called an annual exam, which includes a biopsy testing for cellular rejection, testing of the arteries for any hardening, and testing pressures on both sides of the heart.

With older children and adults, they can use a local anesthetic, but with smaller children who can not really follow instructions or stay still, they use full anesthesia.  So, it is a surgery, but the incision is very small - more like a scratch than an incision.  I thought I might share our day of the "cath". 

This Wednesday, we arrived at the hospital around 7 a.m., went to the Ford Surgery Center to get checked in, all the vitals taken, etc.  We were then taken to the pre-op holding area, where Bean was given a pre-op medication to help her relax and forget any trauma that happens in the pre-op time.  We then walk down the hall from Lucile Packard to the Stanford Hospital side where the cath labs are located.  (In the new hospital that is being built I think LPCH will have their own surgery areas and cath labs, but right now, everything goes down to the Stanford side).  I had to dress in some ridiculous looking sterile garb to walk down the hall and into the surgery room with her and then we laid her on the operating table and as they tried to put the anesthesia mask on her she freaked out and started bucking like a wild animal, screaming, and crying.  It took three of us to hold her while the anesthesiologist held the mask over her mouth and nose and we waited until it took effect.  This is typical and she never talks about it, so I imagine she forgets it afterwards.  She talked about me being dressed in the "nursing" clothes after and walking down the hallway, but said nothing of the anesthesia mask.  So, that is a a relief to know that she doesn't really remember it at all.

We then go back down the hall to the LPCH waiting room and wait.  The typical cath is anywhere from 30 minutes to an hour, but the annuals sometimes take a bit longer.  We grabbed some breakfast then sat and watched TV, did some computer work, and chatted with my in-laws who were nice enough to drive up from Bakersfield for the procedure.  In about an hour and a half (they don't start immediately because they have to get an IV placed, take some blood for labs, etc. before starting, so this was actually pretty good time) we were told they were done and she was coming back to the PACU (post-op recovery).  The doctor came in and told us that everything looked good and she did well and we waited another 15-20 minutes to be called back to the PACU to see her.

Each time in the PACU is different.  Sometimes she is still asleep.  Often she is crying, but pretty out of it.  This time, she was in the middle of the post-op Echocardiogram and she was crying pretty hard and fighting the echo tech with all she had.  She was rolling away, trying to grab her arm and move it, kicking her legs.  And she was still pretty out of it.  The echo doesn't bother her much anymore when she isn't post-op, but the nurse a few times ago told me that some of the kids have a reaction to the anesthesia that makes them really angry and emotional.  I think she is one of those kids.  Because even when the echo tech finished and left and I was able to hold her and rock her, she was not very comforted.  After about a half hour of crying, trying to get her to take a popsicle or water or juice, trying to convince her to keep her leg straight and still so the entry sight would not bleed, and just general misery, we were told we were moving up to the Short Stay.  This usually happens only after the annuals because they have to put them under deeper and longer and it takes them longer to be completely recovered from the anesthesia and they want to make sure there is no bleeding at the sights.  For other, shorter caths, we're usually able to stay in the PACU and leave after an hour and a half or so recovery.  But, for this one, it is a four hour recovery.  So, they send us to the Short Stay where there are shared rooms and not a nurse assigned to every bed.  She was angry and miserable for about another hour or hour and a half and then she got hungry, so we ordered food for her and she ate and started to feel better.  It was a lot of sitting, trying to calm her down, make her comfortable and dealing with our own hunger and exhaustion.  We got lunch from a local Jack in the Box, ate in the lobby and by that time, they were releasing her.  It was 2:30 p.m.  So, we had been there for 7 1/2 hours and we were now going to have to drive back home, which is a 3 1/2 hour drive!

It was an exhausting and long day, but we received nothing but good news and the next day we were given the news that she had a zero in rejection!  So, all in all, it is worth it to know that she is doing well and her heart is doing well.  But, the catheterizations have become a new level of stress because of the heart valve damage that happened last year.  You can read about that and the aftermath of it here.  But, all went well, and I'm feeling better about things now.  It is good to know that there is no rejection. Even when she seems perfectly healthy, it is sometimes a worry.  So, the catheterizations and biopsies are really the only way to get a guarantee that no rejection is happening in there.

B is for Blue and Green Day - April 19

Today is "B" and I thought I would share some information about the annual "Blue & Green Day," which falls on April 19 this year.  On this day, people are encouraged to don their blue and green to bring awareness to organ donation.  According to the website, the purpose of the day is to "give HOPE to the more than 117,000 people on the organ transplant waiting list; HONOR organ, eye and tissue donors; REMEMBER those that died waiting for their second chance at life; and CELEBRATE the
patients who received the gift of life through transplantation."  So, on April 19, I will be wearing my Donate Life shirt, carrying my Donate Life bag!  I will be honoring not only Bean's donor but all those donors and their amazing families.  I will be celebrating Bean's transplant and the life she received.  And, I will do my best to remember all those who are not able to receive their needed organs while also holding out hope for all those still waiting.

If you have not already registered as an organ donor, please do so here!  There is no greater gift than this - I speak from experience.  And I hope you will consider donning some blue and green on April 19 and sharing my story if you don't have your own to share! 

Blogging A to Z in April - A is for April Being Donate Life Month

Well, it has been a while since I blogged here at A Second Heart!  Bean has been doing well (check her out in that picture in the blog header - taken this past week) and I guess I didn't know how to reenter blogging here while lacking the exigence of her illness.  But, I've decided that the Blogging from A to Z and Donate Life Month are the perfect means for making the comeback to posting.  And I realize that I don't need to have it be medically related every time I post, although I have chosen Organ Donation and Transplant for the theme of my A to Z month, so it will continue to be somewhat medically related at least for a little while. 

According to their website, the Blogging A to Z Challenge is:

 Using this premise, you would start beginning April First with a topic themed on something with the letterA, then on April second another topic with the letter B as the theme, and so on until you finish on April thirtieth with the theme based on the letter Z.  It doesn't even have to be a word--it can be a proper noun, the letter used as a symbol, or the letter itself.  The theme of the day is the letter scheduled for that day.

So, I am starting today with A.  I thought of using Allomap or Anti-rejection Medication (that may still come up under "I" for immune-suppression), but then I saw that April is Donate Life Month and so I decided that was the perfect first post for this theme!

Donate Life Month is an effort to increase registered donors so the 115,000 men, women and children awaiting organs will have a better chance of finding a match.  There is even a Presidential Proclamation for the month!  So, in honor of that and in the hopes to give back a little for the miracle we have received for my daughter, I will be blogging about Organ Donation and Transplant this April! 

Looking ahead, I will be telling you about Blue and Green Day (April 19), Cardiac Catheterization (on the day that Bean is receiving her first one since that fateful day last year when they bumped her valve during one), Donors and their families, and that will be just the beginning of this week!  I look forward to catching up with those of you who have been wondering how we are doing, spreading the word about organ donation and providing some information about transplant and the aftercare involved with it.  I hope you will join me this month!

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!

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...

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!