Thursday, March 31, 2011

A day of pros and cons

Yesterday we took Claire back to Duke for some check ups and tests.  Needless to say the day was full of pros and full of cons.  The easiest way I know to write this post is by comparison posts.  So here we go:

#1 PRO:  Claire did GREAT on the ride up to Duke yesterday!  She slept from home to Julie's house, played with Aunt Julie and her animals, then rode nicely up to Duke. 
#1 CON:  It rained horribly on the drive up to Duke. 

#2 PRO:  When we walked into the lobby of the Children's Health Center, we saw one of Claire's NICU friends, Elizabeth and her family!  We haven't seen them since we left in January.  Elizabeth was there for some check ups and tests too! 
#2 CON:  No really con to this!  :)

#3 PRO:  We were called back quickly and were told we could go ahead and have the echo and ultrasound done together so we didn't have to go upstairs and then back downstairs for appointments.  We were thinking this would get us out of there earlier.  Claire did great for the echo, just wiggled a lot. 
#3 CON:  We ended up being at Duke for 5 hours.  Claire wouldn't be still for the echo so it took longer than normal.  They wanted to sedate her but I had just fed her.  So the next one she has in 6 weeks, she will have to be sedated.  At this echo, I had to hold a light wand thingy up for her to try to keep her occupied, but failed miserably.

#4 PRO:  We don't think they saw any leakage between the bovine patch they put in during heart surgery.
#4 CON:  The cardiologist DID say they think she has some left pulmonary stenosis that may have to be fixed.  Of course in my normal state, when someone tells me something "bad" I freeze up and tune out.  So I was unprepared to ask, "why?  when?  how?"  etc.  Of course, I didn't think of all of my many questions until we were on I-40 going home.  I tried calling her office and left a message and also emailed her late last night, but have not heard anything back.  We thought we were past the heart issues.  Why one more?  Why was it not fixed in her surgery?  Is it something that just happened?  Or has it been this way the whole time?  The procedure to fix it would be like inserting a balloon in the artery to "dilate" it.  How will this be done?  When?  I know she said it wouldn't require another open heart surgery.  Thank God.  I know she said it was past the part of the artery that the surgeon fixed.  It seems to be after the artery forks and one side goes to the right lung and the other side goes to the left lung.  So somewhere between the part of the artery that was fixed in her surgery and her left lung.  What side effects do I need to watch out for?  She said just eating habit changes.  Geez - that could be anything!  We are so dumbfounded once again.  I slept with my teeth clenched together all night.  S.T.R.E.S.S.

#5 PRO:  Claire slept through pretty much her entire ultrasound of her liver.  She did great!  She woke up for the ultrasound of her groin to look for the hernias, but just laid there contently. 
#5 CON:  The large cyst was measuring bigger.  I could tell from the measurements on the screen.  I think 2 weeks ago, it was measuring around 6x5x6 or something.  Now it's measuring 8x7x6 or close to that.  The small cysts seem to be still about 1 cm by 1 cm.  The big cyst on the right lobe and one small one on the left lobe are considered "complex" meaning they are made up of both fluid and solid structures.  We were unable to see the surgeon yesterday, so I have put a call into her to see if she can call and let me know what she thinks about the cysts and the current plan.  Also they did find 2 hernias on either side of Claire's groin.  They seemed small, but what do I know about inguinal hernias?!  Not much!  So this is something else I need to ask the surgeon since she would be the one that would fix them. 

#6 PRO:  Our FAVORITE doctor, Dr. Rachel, came by on her day off to visit with Claire!  We just love her!  She was waiting on us once the ultrasound was done!  She hung out with us and went to her cardiology appointment with us.  She even went with me and Claire during the EKG.  Dr. Rachel brought Claire the cutest pink puppy that is so soft!  I know Claire will love it.  I do!  We were able to sit and visit while waiting.  It was so nice.  We sure miss Dr. Rachel.  She is an excellent doctor.  Did I say that we love her?!  She also gave us some EXCELLENT news!!!!  Her fiance will be staying and working at Duke, so she will now be applying to do her fellowship at Duke.  What does this mean for us?  Well, she is going to be a pediatric cardiologist.  Yes!  So Claire can be her patient forever!!!  YAY!!!!!!!!!!!!!!!   This totally made our day!!!!!!  Dr. Rachel also told us about one of the cardiologist that Claire had seen and that she was also a geneticist.  That is good since we are now considering taking Claire to a geneticist.  Someone who is already familiar with Claire.  Shew!
#5 CON:  There is no con to this one!

#6 PRO:  By the time we got onto the Durham Freeway, Claire was asleep in the car.  She slept the entire ride home!!!  Even when we stopped at a drive through!   Usually her eyes pop open when the car stops at a stoplight.  She was so exhausted from the day that she was just out.  She even slept last night from 7:30 pm to 5 am!  Go Claire!!!
#6 CON:  It rained the whole way home too. 

*One more addition I forgot:

#7 PRO:  Claire has many nicknames:  Claire Bear, Claire Rose, Sugar Bear (pronounced "sugah"), just plain "Sugah", Sweet Girl, etc.  Usually the way I address her the majority of the time is "hey, sugah bear! with about 25 syllables in it.  She loves it.
#7 CON:  Claire does not know her real name.  Trent is about the only one who calls her by "Claire" as he just loves that name.  Our child will grow up not knowing her real name if I have much to do with it.  I need to work on that and start calling her Claire every now and then....

So that's the kind of day it was.  Up an down.  Back on the roller coaster.  We are so proud of Claire and how she did yesterday.  She is growing up so fast.  Now it's just sit and wait for the doctors to call us back.  I am a patient person, but it's very hard to wait. 


The Scott Family


  1. If they have to fix the hernia's it is a quick surgery. Layn had hernia's also after all his surgeries too. It was done as a day surgery and we were back home by mid afternoon. Don't worry it's all very fixable and an easy surgery, no pains meds afterwards, just Tylenol. By the next day Layn acted like he hadn't had anything done.

  2. Ok, I just typed a really long comment and then *poof* it disappeared when I clicked on post. Grrr...

    Anyway, what I originally said is that Rebekah has/had pulmonary stenosis. It is a narrowing of the pulmonary arteries (or artery if just one is affected) *usually* caused by an area of scar tissue. Rebekah's occurred at both ends of the conduit that was placed during her last open heart surgery. The procedure to "fix" it is a heart cath. Has Claire had one before? A catheter is threaded to her heart (usually from the groin area, but not always) and a small "balloon" is threaded through the catheter. When the balloon is in position in the narrowed area, it is slowly inflated to stretch the narrowing back to normal size. Much less invasive than open heart surgery!! For Rebekah, a heart cath is just one night in the hospital and we are back home the next day. The stenosis can come back if scar tissue builds up again, but it is a *relatively* easy fix.

    The things we were told to watch for in Rebekah were: lethargy, cyanosis (blue baby), and feeding difficulties. Our doctor described feeding difficulties like this. If Claire normally has a 4 oz. bottle, but is sweating profusely and can't catch her breath after drinking one or two ounces, that's a feeding difficulty! The doctors were monitoring her stenosis for several months and scheduled her cath before we ever noticed any of those things.

    Glad you were able to see some friends during your visit. That always makes the trip more fun!

  3. Thanks for the explanations of both procedures. It's kind of scary just not knowing. So now that I "know", it makes it seema little better. Nancy, Claire has not had the heart cath before. So I wasn't sure exactly how that would work! Nice to know that both are not long term stays in the hospital!!!!! Or so taxing on Claire.

  4. Claire is such a trooper. You could call her Claire sugah Bear but thats kind of long! :) Love you guys!