Prep and Recovery

Sorry it has taken me a few days to post.  I've had ocular migraines (flashing lights, nausea, migraines, light sensitivity etc.) and felt sick every time I lifted my head let alone looked at a computer.  The optometrist said it can be brought on by stress, dehydration, and low blood sugar.  Check, Check, and Check.  I've spent some time away from the hospital and gotten extra sleep.  I'm doing much better now (I hope!).  


Quick Update:  We've had a few ups and downs but now Caroline is doing great! Yes it is a long post again...I just can't help it!  


Also, thank you for the outpouring of support we have received.  I haven't had a chance to respond to most of it but it does not go unnoticed!  THANK YOU :)

Prepping for Surgery
I didn't have a chance before to share about the days leading up to surgery, so here you go!

Leading up to the surgery Caroline had a chest x-ray, an EKG, and a second echo cardiogram (echo).  It was actually a pretty scary time for us.  There were a lot of questions about what type of surgery to do, when it would be, and how risky it was.   


The doctors were initially confused as to why Caroline was in such bad heart failure (ugh I hate that.  My daughter was in heart failure).  The bottom part of the hole didn't look very big initially so she should have been doing better.  Well upon closer inspection, which included bringing in the head of pediatric cardiology and having him perform the echo, they found the bottom part of the hole (the VSD or ventricular septum defect) was actually quite big and uniquely/unusually shaped.  No one wants to hear that going into surgery.  They also weren't sure whether it was in a place that they could safely reach in the heart or if there was enough stuff there for them to attach the patch to.  It was a hairy couple of days for us as they figured that out.  


We also didn't know when surgery would be.  We didn't find out until noon the day before that she would have surgery they next day!  We didn't believe it until the surgeon came in and did his pre-op discussion with us.  That in and of itself is nerve racking.  You have to hear about all the things that could go wrong.  She could come out still on the heart lung machine.  She could still have her chest open if her heart is super swollen.  He could not be able to fix something.  Scary stuff.


What made it easier for us was Phil and I made some plans before hand.  A few days before surgery we left the hospital for awhile and tackled the hard stuff.  What if we loose her?  What would we do?  We were reassured that we still had one another.  We had been there before and we could survive it again.  We made funeral decisions, cremation/burial decisions, and travel decisions (we were going to go on another trip to Europe.  We found that after loosing Emily planning a trip was a good distraction).  The decision that helped me come to peace with everything the most was also what took the most strength to verbalize later to the doctors.  Without question we knew that if we lost her we wanted her to be an organ donor.  If in our pain we could give hope and happiness to another family then it would make loosing Caroline a little bit easier.  The doctors actually never asked us about this.  Before they took her to the OR we brought it up.  It was the last thing we discussed before they wheeled her off.  We knew that if she were to die then they would need to take measures to preserve her organs.  I would have been mad if we weren't able to help someone simply because we were too scared to mention the possibility of loosing her.  We made it clear that we wanted them to do everything in their power to save her but if they couldn't, then we wanted them to preserve her so that she could help others.  I kept imagining being a parent who has been told that their infant needs a transplant and how horrible it must feel that in one child's death their child would gain life.  I don't want anyone to ever have to loose a child.  We know that all too well.  The idea of being that hope for another family and taking that pain away from someone else, it filled me with joy.  Almost like there would be a purpose to her loss.  Obviously we were hoping it wouldn't come to that.  It is just what gave us peace as we entered her surgery.  


Besides all the anxiety and decision making, we also spent a lot of time playing with Caroline.  Phew!  We were all worn out!

Look who fell asleep like this on ReRa's lap!

All snuggled up with her new favorite toy, the kitty/blanket

Mommy where are your glasses?

Fell asleep playing

I love getting extra ECHO Cardiograms!  Look I'm even helping!

Miss Chelsea my teacher is helping me lay on my side and play with toys.
Mommy and daddy have learned so much already from miss Chelsea!

A visiting dog or a small horse?

Chaplain Jason

It's okay Mommy.  Surgery will go great tomorrow!

Recovery


Friday 7/13---Caroline was very swollen on Friday.  They said that this day, the second day is when you are the most swollen.  You could really see the swelling in her face.  When we walked in Friday morning we also found out that they had turned the pacing wires on.  They always leave pacing wires on the heart (under the skin directly on the heart) in case they need to use them.  Well Caroline needed them used.  She was having irregular heartbeats Thursday night that were coming and going and then they stayed longer.  So they plugged her into the pacer and turned it on.  They said it was because her heart was swollen due to the surgery.  Once again, very normal.  We weren't worried about it because she came out of surgery with a regular heartbeat.  If she continued to need the pacing wires 11 days after surgery then she would have to have a second surgery to put in a permanent pacer.  She was on the ventilator still this day.


Saturday 7/14---They were able to turn the pacing wires off!  Both Caroline's heart and whole body were much less swollen!   Our biggest problem was her high activity level.  One of her nurses nicknamed her a "wild child".  She was thrashing around a ton! They had her arms tied down slightly because she tried to pull her ventilator out the first night.  She could still move her arms, just not enough to get to her tubes.    They had to keep her sedated too because of the thrashing.  Too much thrashing = more bleeding from her chest tube.  It was REALLY hard to see her thrashing those first few days.  We were just so worried that all that thrashing was going to cause her harm.  She also looked like she was uncomfortable or in pain when she was thrashing.  Probably so, I mean she did just have heart surgery.  To make it worse, every time she thrashed her monitors started going crazy.  When this happened that first night after surgery they brought in the ekg machine to make sure everything was okay.  Because of all the thrashing she had to be heavily sedated.  While heavily sedated she had to be on the ventilator.  They started slowly weaning her off the sedation on Saturday so that she breathed more on her own.  She needed to be more awake when they took the ventilator out so that she would want to breathe on her own. 
 
Sunday 7/15---They took her off the ventilator!  They changed her to the CPAP (see picture below).  This is a step down from the ventilator.  She was not as sedated because she needs to be awake in order to breathe.  Her cry was very hoarse this day because her throat was swollen after having the ventilator down her throat for a few days.  Her arms are no longer tied down :)  She was much happier once the ventilator was out.  Part way through the day she switched to a high flow nasal cannula (see picture below) which is a step down from the CPAP.  She got to eat a very little bit on Sunday.  When she came off of the CPAP she was showing some signs of difficulty breathing.   

Monday 7/16---When we came in on Monday Caroline was back on the CPAP.  We weren't totally surprised.  She was having mild chest retractions on Sunday when she was just on the nasal cannula.  Caroline's morning chest x-ray (she gets an x-ray EVERY morning) showed some pockets of her lungs had collapsed which is normal after a major surgery like she had.  There was also fluid in her lungs which is something we have been battling since surgery.  Just another side effect of a major surgery.  That in conjunction with the cardiologist's clinical evaluation (looking at Caroline and her stats)  made her order an echo to see what was going on.    The cardiologist on the floor this week was the cardiologist working with the surgeon last week (they all switch around each week) so she has LOTS of knowledge of Caroline's heart.  I mean she saw it up close and personal!  She wanted to see what it looked like a few days after surgery compared to how she and the surgeon left it at the end of surgery last week.  Caroline's stats, x-ray, and appearance were all saying that something wasn't quite right.  The echo showed that due to the collapsed pockets in her lungs her heart was working harder.  So much so that the right ventricle (which had previously been doing great!) was having trouble pumping, the tricuspid valve (valve on the right side) was now leaking some (remember no leakage in that valve when she came out of surgery) and the mitral valve (valve on the left side) went from mild+ to moderate leakage.  They also noticed a small hole in her ventricular septum (bottom part of the wall separating the left and right of the heart.)  This was very scary to hear.  It felt as if they were saying that our child's heart was failing...which was NOT the case.  Her heart was just not ready/strong enough to pump without some assistance.   They gave her medicine to help her heart pump, upped her medicine that makes her pee to get the fluid off her lungs, and changed back to the CPAP with the chance of going back on the ventilator.  The CPAP was supposed to help 'pop' open the collapsed portions of her lungs.  The hope was that doing all this would take some of the work off of her heart and the symptoms we saw on the echo would decrease.  


Tuesday 7/17---Caroline is a peeing machine!  She was on CPAP all day on Tuesday.  We saw a big change this day in Caroline.  She was breathing better and peeing all that extra fluid off.  It was great!  They took out her chest tube and the pacing wires on her heart this day! 


Wednesday 7/18---Caroline is just on a nasal cannula!  Almost just on room air and breathing comfortably!  By evening on this day Caroline had peed so much that her eyes were sunken in and part of her skull (the fontanel) was sunken in.  Basically she was dehydrated from all the peeing she was doing.  They decreased her peeing medicine and upped her fluids.  She started looking  a bit better by late that evening.   


Thursday 7/19---Her chest x-ray looks good.  Not too much fluid on her lungs and not very many areas of her lungs that are still collapsed.  I'm hoping that we can try a bottle today too.  She has been getting fed through an NG tube the past couple of days.  She is probably staying in the PICU today as we continue to figure out her fluid levels.  Maybe we will go to the regular pediatrics unit by the weekend???  Who knows.


We have learned that with all this you kinda go one step forward, two steps back.  This was not just some simple surgery she had.  It is a balance game we are playing.  How much medicine does she need versus weaning her off of it.  If you get upset about one day, one event, you go crazy.  You just have to take each day as it comes.  I'm not going to update the blog every day about every little up and down.  You have to look at things over multiple days, not just one x-ray or blood draw.  We've actually had multiple cardiologists and the surgeon admit since the surgery that they were nervous going into the OR.  Great.  At least she is doing better than they expected.  


We still don't know the long term prognosis of her heart.  She hasn't had another echo to know if she is doing better.  She will have another echo in a few days.  The doctors think her heart isn't working as hard because she is showing no symptoms (unlike Monday when she was showing tons of symptoms).  We are hopeful that she has gone back to what is was like coming out of surgery.  The reality is that there is a high chance she will have to have a mitral valve replacement in the future.  It was just so abnormally shaped and small that it may not hold up well long term.  That would be years from now though (hopefully!).  People live with leaky valves all the time.  It doesn't matter how much her valves are leaking but how the leakiness affects her.  Right now if they are leaking she is doing great!


Phil and I are doing well.  We have taken the past couple of days to relax and get out of the hospital a bit.  On Friday we went to two wineries that we like  here in Charlottesville.  On Saturday we took our parents to the Downtown Mall and had Christian's Pizza (if you went to UVA then you know how awesome their pizza is).  We've gone out to a couple of nice dinners too. It has been good to get out, relax, and let the doctors and nurses do their job.  Once Caroline is back on the regular pediatric unit I will be sleeping at the hospital again.   


Wow I just realized...we are one week post-op!  Wahoo! 


Love,
Megan

Ventilator and swollen

Still on the ventilator and swollen

CPAP

Stuff from home
Zach, Goodnight book, Harry Potter, basket of blankets

Not feeling good on Monday on just a nasal canula.
She went back on CPAP after this

Hello baby girl!
Breathing great on just a nasal canula on Tuesday!