A Big Scare!

Let me preface this by saying that Rebekah is fine, thanks to the wonderful medical equipment that we have been blessed with.

This evening we put Rebekah in bed around 7:30.  She was tired, but that is usually the case at bedtime.  We've been keeping her up in the afternoons instead of letting her take a nap.  It has worked really well, and she is actually tired at bedtime instead of playing in her bed for 2 or 3 hours after bedtime.  Rebekah seemed fine all day, and she rolled over and went to sleep almost immediately.

Drew and I were downstairs almost an hour later when Rebekah's sat monitor alarmed.  Drew went up to check on Rebekah, and we both assumed that she had just pulled the probe off, or that she had gotten twisted in the cord and it was loose.  When Drew called me to come upstairs just a minute later, I knew that the probe hadn't come off.

When I got upstairs, Rebekah's oxygen sats were 81% (she is normally 95%-100%).  As we stood there for a minute, she dropped to 80%, and then to 79%.  I started turning her oxygen up (it is normally at 1/2 liter when she sleeps), and I got up to 1 and 1/2 liters when her sats dropped again to 72%.

Drew had rolled Rebekah over onto her back and started shaking her to wake her up.  She was either very deeply asleep or unresponsive.  Either way, he couldn't wake her up.  He then sat her up and started lightly patting her cheeks.  Finally she woke up and her sats popped right back up to 100%.  The whole episode only lasted about five minutes, but it felt like we were watching time in slow motion.

After Rebekah's sats came back up, we let her roll over and go back to sleep.  We watched for a few minutes, and she seemed to be fine.  We will definitely be sleeping light tonight, and I plan to call cardiology first thing in the morning to let them know what happened.  This episode seems to confirm for us the need to have Rebekah evaluated by the sleep doctor.  Hopefully sooner rather than later!  I do plan on calling the after hours cardiology number if this happens again tonight.  Have any of you heart moms had something like this happen with your kiddos?

We thank you so much for your prayers.  This just reminds me that even when we think Rebekah is doing well, she is still a heart baby and always will be.  Really, there is never a time that we can relax and say she's out of the woods and doing fine.  Praise the Lord that we have medical technology available to us that can literally help to save Rebekah's life.

Nancy

Closer to answers?

First off, I have to say thank you all for your prayers for Rebekah's appointment this morning.  She did fantastic!  I was a bit concerned because I wasn't sure how long the appointment would take this morning, but Rebekah was as good as she possibly could have been!

To start with, Dr. L scheduled Rebekah for an echocardiogram.  We are so grateful that everything with Rebekah's heart looks great.  Her pulmonary hypertension remains stable (about where it was after surgery), her heart function looks good, and she is not retaining any fluid. 

Based on my description of Rebekah's symptoms, Dr. L thinks she is having bronchial spasms caused by micro-aspiration secondary to her vocal cord paralysis.  Do you want the English version now?  Dr. L thinks that despite thickening Rebekah's liquids, that she is aspirating very, very small amounts of liquid which is irritating her airways.  The irritation is causing the coughing and choking and breathing abnormalities. Since Dr. L didn't see anything cardiac related, he referred us upstairs to pulmonology.

Unfortunately, Rebekah's pulmonologist was not in the office today, but one of the other partners was able to work Rebekah in immediately.  He completely agreed with Dr. L's theory, so he made a couple of recommendations.  First, he wants us to restrict as much liquid as possible from Rebekah's diet.  That's not going to be fun at all!  Second, he wants Rebekah to have another swallow study done here in Greenville.  Two weeks ago when we discussed another swallow study with Rebekah's pediatrician, she wasn't choking nearly as much as she is now.  It seems like we are going rapidly in the wrong direction.  So he wants to get another look at Rebekah's swallowing and see what (if anything) has changed in the last few weeks.  The nurse was hopeful that we could get it scheduled for next week.  Finally, we left the office with prescriptions and samples for two inhaled medications.  This is our first experience with inhalers.  In the past when Rebekah has needed inhaled medications we have always used the nebulizer.  The inhalers are much faster than nebulizer treatments, so I'm hoping that Rebekah gets used to them pretty quickly.  She has what is called a spacer that holds the medication until she breathes it in.  It's a pretty ingenious little device.  I'll hopefully get a picture of it and how it works with Rebekah in a couple of days after she has had a little time to adjust to it.  She wasn't exactly thrilled with it tonight.  :)

Hopefully Rebekah will only need to use the inhalers for a few weeks until we can get the irritation in her airways calmed down.  She is taking Flovent in the morning and evening, and Xopenex as needed for uncontrollable coughing.  We gave Rebekah the first dose of Flovent after dinner, and she has so far been sleeping fairly well.  She has only woken up coughing twice, which is a definite improvement from last night.  We'll see how the rest of the evening progresses.

I just had to show you this hilarious picture.  Rebekah held her foot out to Aaron and said "thiss," which means "kiss."  So Aaron very sweetly knelt down and kissed her foot.  It was very cute!  And, you can't see it in the picture, but Rebekah is rubbing Aaron's hair on the other side of his head.  :)

I just cannot describe to all of you how much the boys love their sister.  She is absolutely the light of our family, for sure!  We are so blessed to have been given such a special little girl.  Thank you all for praying for her, and please continue to pray that we find some definite reasons for the cough and choking Rebekah has.

Nancy

No Answers

If you read yesterday's post, you know that Rebekah is still struggling with coughing and choking at different, random times during the day.  This morning she also woke up breathing very heavily, as if she had just been running around playing for an extended period of time.  Several times yesterday and today Rebekah has also tapped the center of her chest and said "owie."

Rebekah did get an appointment this morning with her pediatrician.  He spent a great deal of time listening to her lungs from every conceivable angle.  And, he heard the same things that I had heard last night - very soft breath sounds in the right lung, and a strange two-part hiccuping sound in the left lung. Both of those things are distinctly different from Rebekah's normal.  So Rebekah earned a ticket to the hospital for an (outpatient) x-ray.  Unfortunately, the x-ray didn't show any change from the last x-ray Rebekah had at MUSC.

The good news in all of this is that Rebekah is maintaining her oxygen sats on her own, so she isn't needing any supplemental oxygen right now (other than what she was already on at night).  Rebekah also is not running a fever, nor does she have any other symptoms that would indicate she is "sick."  She is playing and running around with her brothers in spite of the coughing and breathing abnormalities.

Since Rebekah's pediatrician couldn't pinpoint a specific reason for her cough and other symptoms, he referred us back to Dr. L, Rebekah's cardiologist.  His office called this afternoon, and we have an appointment tomorrow morning with Dr. L.  We will see what tomorrow's visit brings!

Nancy

Getting Sick?

Thankfully the last couple of days have been pretty uneventful around here.  :)  Rebekah is completely enjoying being at home with her brothers and just being a toddler!  Aaron and Caleb and Rebekah painted pet rocks on Friday.  Rebekah's rock was red.  The rock wasn't the only thing that was red!!  :)  It is so much fun to see Rebekah feeling well enough to do projects with her brothers!

Rebekah has continued to have periods of coughing and choking over the last several days.  She has done well with thickened liquids, and the coughing doesn't seem to be during meals or when she is drinking liquids.  For a while, the coughing was mainly during the night and in the mornings when Rebekah first woke up.  However, now she is coughing when she cries, and off and on during the day.  I think we are headed to see the pediatrician in the morning to see what might be going on.  I'm hoping that this is not the result of an episode of aspiration sometime before we started using the thickener in Rebekah's drinks.

Friday night I had the pleasure of meeting with a group of heart moms from our local area.  Three hours flew by so quickly!  It was so encouraging to spend time talking with other moms whose children struggle with some of the same things that Rebekah does.  It was definitely worth the drive to get there!

While I was gone Friday night, Drew and the boys got out our Twister game.  The boys had so much fun playing.  I'm amazed at how twisted they were!  :)

Saturday was Aaron's birthday, so of course we had to make a birthday cake!  This little girl hasn't been into the chocolate at all, has she?!  :)  I love how innocent she looks - Who, me?!  She took great pleasure in sneaking her little finger into the frosting when she thought I wasn't looking.  In spite of her help, I thought Aaron's Angry Birds cake turned out pretty cute.

Our little Aaron-bear turned six years old this year.  Wow!  It's hard to believe our little peanut is this big.  He is such a good helper and adores his little sister.  We are so thankful he's a part of our family!!

This morning Rebekah had her vision check-up.  We are very blessed to have a pediatric ophthalmologist less than twenty minutes from us.  He was very pleased with Rebekah's eyes.  Her ptosis seemed a little better to him today, so we are grateful for that.  We will continue to see the eye doctor every six months indefinitely to continue to make sure that Rebekah's vision is not changing or worsening.

No, no, not another picture!  :)  Well, okay, maybe just one picture.  You can really see Rebekah's black eye now.  Hopefully it will start to fade in another couple of days.

Rebekah has been cleared by her cardiologist to resume therapy whenever we feel she is ready to start.  Rebekah's awesome EI will be coming to visit on Friday, and we will set up PT to start probably next week.  I'm just a little hesitant to push Rebekah too far, especially when she is having the choking and coughing.  We'll see what tomorrow's doctor's visit brings.

I love Rebekah's beautiful outfit here.  Strawberry shortcake scarf, hat and Great-Grammy's mittens.  Rebekah asks to put them on and then takes them off about 3,286 times each day.  I'm glad she loves all of her girly accessories!  :)

No autographs, please!  :)

I'll hopefully update sometime tomorrow after we find out what the doctor says.  Pray that it's nothing serious and Rebekah will be feeling better soon!

Nancy

Audiology, an injury and two big blessings!

All right, everyone, don't have a heart attack because I posted two days in a row!  :)  Don't get used to it, either!!  :)

I'll start with the blessings, since I'm excited to tell you all about them.  Then I'll get to the nitty-gritty stuff of today's appointment.  Over the Christmas season, we were given several gift cards and cash to be used for our family.  I won't embarrass those who gave, but you know who you are.  Thank you from the bottom of our hearts.  As you will see below, we combined the gifts to purchase a very, very much needed item in our home!

So after much research and deliberation, this is how we decided to use the money.  If you have been to our home in the last couple of years, you will know that our kitchen eat-in area housed a small kitchen table and a card table to seat all of our family.  We don't have a separate dining room, so to have guests over for a meal was always interesting!  :)  We certainly have not complained about our dining room seating (or lack thereof), but we felt like we really needed room for our entire family to sit at one table for meals!  We ended up purchasing two rectangular dining room tables that we have pushed together to form one large (almost) square table.  We have benches on three sides, and hope to get a set of two chairs in the near future.  This will give us seating for 10 as it is right now, or we can slide the two tables apart and seat 15 when we have guests!  Thank you to everyone who made this lovely addition to our home possible!

The other big blessing today is that we finally found thickener for Rebekah's drinks!!!  Our fantastic EI, Katherine, was such a huge help in finding out where we needed to look for it. I don't know why I didn't think to call her last week, but anyway, she got the information for me in about 20 minutes (or less!).  As it turns out, Walgreen's carries the Thick It product on their store shelves, so I simply walked in and purchased it.  Wow!! I tried some in Rebekah's milk this afternoon, but the directions on the package literally turned the milk to glue.  Ugh.  Rebekah took one sip and handed the cup back to me and asked for milk!  :)  So, I put in about half of the recommended amount of thickener, and it worked beautifully! She was able to drink her entire cup of milk at dinner tonight without choking once!!!  Thank you so much, Katherine, for all your help!! It was great to see you today, and we are all excited to see you next week!

 Yep, she's pointing to her first black eye!

Now for the injury.... It's a little hard to see in the picture above, but Rebekah is sporting her first black eye!  She was being such a big girl and helping me carry groceries into the house when she got tripped up and fell on a box of crackers.  Thankfully the corner of the box caught her just under the eye instead of in  her eye!  She cried and willingly held an ice pack on it for about two minutes, then she was off and playing again.  It's definitely going to be purple tomorrow!

The rest of the story will be interspersed with pictures of the kids helping Daddy put the tables together.  Even Rebekah wanted to help "hold" the table legs while Drew put the screws in.  She is such a good helper!!  The younger boys were all holding various pieces of hardware for Daddy, while Zac had his own job taking off the supports that were used in shipping.

Rebekah had a follow-up audiology appointment today.  She generally has follow-ups about every six months, and the last one was in early July, I believe.  I have to say, Rebekah did absolutely fantastic for her appointment today.  She was 100% cooperative, and I couldn't have asked her to try harder than she did.  The audiologist also noted, for the first time ever, that there was no fluid in either of Rebekah's ears, so we were able to get very, very accurate results at this appointment.

Oh, one quick rabbit trail, then I'll get back to the audiology appointment.  I gave the boys hair cuts on Monday, and Zac wanted his hair buzzed really short.  Poor Zac has such incredibly thick hair that I can't blame him.  Anyway, Rebekah realized that it felt fuzzy, so she is constantly asking to rub Zac's head - no joking!!  She is absolutely ecstatic when she is rubbing his hair!  Anyway, she now wants to rub all of her brother's heads, and they almost fight over which head of hair she's going to rub next.  Silly boys!

Okay, so for Rebekah's appointment today, her audiologist wanted to try a different type of testing to see if we could get a more accurate picture of Rebekah's hearing.  Typically they wait until kids are between the ages of three and four to do this type of testing, but Rebekah was being ultra-cooperative today, so the audiologist wanted to give it a try.  In the past, Rebekah and I would sit in the sound booth and sounds would come from different corners of the room.  The audiologist would judge Rebekah's hearing by whether or not she turned her head in the direction of the sound.  So you can see why it is not a clearly accurate type of testing.

Today the audiologist put something like ear buds in Rebekah's ears and was able to speak or play a sound in each specific ear separately.  Then based on whether or not Rebekah responded to the voice or sound, we were able to get a more clear picture of her hearing.

I'm not entirely sure of what the numbers mean, or what they are measuring, but the audiologist told me that a range from 0-15 was normal hearing.  Rebekah scored 10 in her left ear. Yippee!!  Her audiologist also told me that if one ear is stronger than another, the left ear is definitely the best one to be stronger because it has more to do with language.  (I'm sure there is a much more technical reason, but that's the short version that I got!  :)  Rebekah's right ear scored at 30, which is considered mild hearing loss.  The audiologist then did a different type of test with a headband-type thing that fastened behind Rebekah's right ear and measured the vibrations of her inner ear.  It appears that Rebekah's inner ear is working fine, but the middle ear is not sending the sounds all the way through so the inner ear can "hear" them.   The audiologist said that a hearing aide would definitely correct the middle ear dysfunction so that Rebekah can hear clearly in both ears.  I think I mentioned after one of Rebekah's previous audiology appointments that if she needed a hearing aide, it would probably only be through elementary school while listening skills are so vitally important.  We would like for Rebekah to have every opportunity possible to do her very best when she begins school, and even now as she is starting to imitate some of the letters and sounds with her brothers.

So the plan is to have another audiology appointment at the end of March.  We are pretty certain that we got accurate results today, but the audiologist wants to have two similar results before we order a hearing aide for Rebekah.  Assuming that the results in March are similar to the ones we got today, the audiologist will be recommending a hearing aide for Rebekah's right ear.  I'm voting for pink!  :)  If the results in March are better than today, then Rebekah will continue to have follow-up visits for a few more years to monitor her hearing.

I'm not sure why Justin looks so grumpy in this picture.  I think I may have caught him starting to talk.  He was begging to have his picture taken with Rebekah.  You can tell our kids are just so camera-shy!  :)

We are hoping for an uneventful, relaxing weekend around here.  Hopefully no injuries and no emergencies!! :)  Thank you all for your love and prayers!

Nancy

January!

Hi!  Here's the long-awaited update, and I have no excuse except that I've been busy enjoying being at home with all my family in the same place!  :)

Drew, Rebekah and I did make it to North Carolina to be with the boys and grandparents for Christmas.  The boys were thrilled to see their baby sister!  We arrived right at lunch time on Christmas Eve, and had barely carried our luggage inside when Rebekah fell and hit her head on an end table.  It bled, and bled, and bled.  We ended up taking her to an urgent care center where they put two staples in her head.  That was not a fun experience, but it was better than stitches!  I never could get her to hold still enough for a picture of the damage, but trust me, there are two staples under that big red bow!  Our pediatrician took them out last week in his office, and Rebekah didn't even cry!

 This was an attempt at getting a good 
Christmas picture of the kids together.

It was good except for Caleb deciding to
 pinch his nose with his fingers.

There's always one in every bunch!

So we had a very enjoyable time with friends and family for Christmas, and even took Rebekah to church at Beacon Baptist to see our friends there.

 Not sure what they are all looking at, 
but clearly I lost their interest! :)

Caleb, Justin, Rebekah, Zachary, and Aaron

 Is one out of five looking at the camera a bad record?!

 Aaron and Caleb

Rebekah had her second post-surgery follow up appointment with Dr. Lucas yesterday.  He is quite pleased with how Rebekah is doing from a cardiac standpoint!  Her heart function is looking great, and her pressures are staying about where they were when she came out of surgery.  Overall we couldn't be more pleased with how she is doing!

 Another attempt at getting a picture of all the kids. 

Zac decided he was tired and went to change clothes 

before I had a chance to drag him into the picture! :)

As far as a non-cardiac standpoint, Rebekah has a few hiccups we've been working through.  And, yes, she has been getting hiccups quite frequently - three or four times a day! They are so cute with her squeaky little voice!  :)

The biggest obstacle we are working on right now is getting a thickener for Rebekah's drinks. If you remember, Rebekah passed the swallow study at MUSC, but had a delayed swallow that they felt has always been unique to her.  Well, since we've been home, she has been choking and coughing with almost every liquid we have tried to give her.  Water, apple juice, grape juice, soda, and usually milk will all make her choke and cough unless she takes very, very tiny sips.  And it's almost impossible to reason with a 2 and 1/2 year old and make her understand that she needs to take very tiny sips.

 Justin, Rebekah and Aaron

After talking with Rebekah's pediatrician, we have decided that Rebekah needs to be drinking thickened liquids (honey consistency) for now, at least until we see some improvement in her vocal cord.  Dr. D didn't see any reason to repeat the swallow study since we know that obviously Rebekah is choking on her drinks and the swallow study will not change the method of treatment.  The decision was the easy part.  It has been crazy to try to find the thickener that she needs!!  Our pharmacy (Target) has not been able to get any for us yet, although they are still working on it.  Rebekah's DME (Apria) could possibly get it, but it's not covered by Medicaid, and they won't outright sell it to us.  Grrrr!!!!  Has anyone else had to get thickener for their child?  If so, what is the most cost effective way to purchase it? I did some online shopping and did find some, but I'm not really sure I want to invest in a large container/canister/packets until we find what works best for Rebekah.  I would love to hear from anyone else who has used this.  What worked best for you?  Favorite brands? Gel or powder?

 See, I told you there's one in every bunch.

Caleb just had to stick that balloon on the end of

his nose right before I snapped the picture. Nice.

Rebekah is still wearing her oxygen at night, and probably will be for a while.  Dr. L was ready to tell us that she could lose the oxygen altogether, but when I told him her sats dropped at night when the cannula happens to slip off, obviously that changed his mind.  :)  From what he can tell, there is no cardiac reason for Rebekah to be needing the oxygen at night, so it's time to look for another reason that she has become oxygen-dependent.

 Can you tell they've had enough of the camera?!

If you've been reading the blog for about a year (or more!) you might remember that we have discussed the possibility of Rebekah having some form of sleep apnea for quite a while now.  Dr. L said that it is now time to refer Rebekah to our local pediatric sleep medicine doctor for an evaluation and likely a sleep study.  It is possible that Rebekah has always had some sleep apnea, perhaps mild, that has been magnified by the damage done to her vocal cord.  Either way, Rebekah will be having an evaluation with Dr. G sometime in February to see if there is something else that we can be doing to help her sleep better.

 Bekah says enough of these silly boys! 

I'm out of here!!

Dr. L did not see any fluid on or around Rebekah's heart and lungs in her echo yesterday, so he told us to drop one of Rebekah's doses of Lasix.  She had been taking Lasix twice daily, but now we are only giving it in the mornings.  Yay!!  If Rebekah's next echo (in February) looks the same, he will give us the okay to drop Lasix altogether!!  That will be the first time ever in Rebekah's life that she will be off Lasix.  Wow!

This last picture deserves a paragraph all it's own.  Justin and Rebekah are bundled up to head out to Rebekah's doctor's appointments yesterday.  And, yes, it was COLD here - it was 22* when we were leaving!  (Okay, now that I look at the picture, maybe they were bundled up a little excessively! :)  Anyway, the hats and scarves are compliments of Grammy, and the mittens were made by Great Grammy in New York.  Thank you, Great Grammy!!  They fit perfectly and we all love them!!

Tomorrow morning Rebekah has an audiology appointment to recheck her hearing.  She has them every six months and will continue having them at least until she's close to her fourth birthday.  I'm glad to know that she is being followed by so many good doctors!

Nancy