Home!!

Wow! What an eventful day!  Rebekah did a great job for her MRI today.  The anesthesiologist and radiologist were great with her, and they let Grammy (Drew's mom) and I go back with her and stay until she was asleep. They also waited to put her IV in until after she was lightly sedated so that she wouldn't feel the discomfort.  It is such a blessing to have medical personnel who pay attention to the little details. The MRI lasted a little over an hour and a half, and then we were called back to recovery.  We have been told that the doctor will call us within a couple of days with the results.

Rebekah was a little nauseated and running a very low-grade temp in recovery.  The got her to drink a sip of apple juice and watched her for a little while then said we were free to go home.  I questioned the nurse about Rebekah's elevated heart rate and temp, but she said it was likely due to dehydration (she couldn't have anything to eat or drink after midnight).  She encouraged us to give lots of fluids at home and let Rebekah rest.

When we got Rebekah home, she had a few sips to drink and then began gagging repeatedly.  Because of the Nissen fundoplication she had, she cannot actually throw up, but she gags horribly.  So we tried running some Pedialyte through her g-tube, and after about 10 minutes she started gagging again.  Her fever had gone up to 100.5 and her heartrate was up in the 160's.  After calling anesthesiology and talking with them, we were told to bring Rebekah back to the ER.

It took us about 45 minutes to get Rebekah to the hospital, and they were expecting us.  We were immediately taken back to a room and the nurses came in to check on Rebekah right away.  When they took her vital signs, her temp was up to 102.7 and her heartrate was in the 170's and 180's.  She was breathing very rapidly, she was quite lethargic and continuously gagging and retching.  They pretty quickly did a flu and RSV swab and got Rebekah some Tylenol suppositories.  After about an hour they also gave her some Zofran for the nausea.  It took a while, but when the Tylenol and Zofran finally began taking effect we started to see some improvements.  The doctor also ordered a chest x-ray, which looked normal for Rebekah (her chest x-rays always look a little abnormal, so they compare her own x-rays to each other to look for any changes).

Rebekah was finally able to take a few sips of ice water and eventually drank about 4 ounces of apple juice.  It was amazing how much difference a little juice made!  She was jabbering to the nurses, asking them for stickers and giving out hugs.  We waited for about 30 minutes for discharge paperwork and we were on our way!  We did make a quick stop upstairs to see Martin who earned an overnight stay with a drop in his O2 sats and not wanting to eat today.  If you think of it, please pray that Martin quickly bounces back to normal so they will be able to go home soon.

So after a very long day we are home and ready for bed!  Tomorrow is going to be another long day.  Rebekah has an audiology appointment at 9:00 in the morning.  Hopefully she gets enough rest to have accurate test results tomorrow!

Thank you for all of your prayers, texts and messages.  We really appreciate all of your encouragement and support!

Nancy

MRI tests and Post-MRI Update

Bekah came thru her MRI ok today. She came home with a slight fever and generally not feeling well. After I got home late this afternoon she had taken a down turn with a high heart rate and fever. So Mom, Grammy, and Bekah are headed to the ER. I will try and post updates as I get them. Please pray for our little one she has had a long day already.


-D

Sedated MRI

Just a quick reminder that Rebekah will be having her sedated MRI tomorrow (Wednesday) at 10:00.  She has been very restless and fussy the last two nights and hasn't really slept well.  We are really praying that the MRI will give us some answers.  Specifically the doctors are looking for any type of malformation of brain, brain stem or spinal column that could be causing Rebekah's central apnea.  They are estimating the procedure will last about two hours.  After that Rebekah will be moved to a recovery room to wake up.  We are hoping to be back home by late afternoon.

Rebekah has never been sedated in Greenville before, so we would definitely covet your prayers tomorrow.  I am confident that the anesthesiology team here in Greenville will take good care of Rebekah, but she is very complicated.  Please pray with us for an uneventful sedation and that the MRI will give us some kind of answers.

Nancy

Accessories and Silliness!

Rebekah has been into two things lately:  accessories and being silly!  I wanted to make sure I got some of her cutest sillies on the blog before I forgot them. :)

This is Rebekah's latest silly pose for the camera.  

It usually appears when I say "Cheese!"

"Justin hit my block head."  (said with a quivering lip and crocodile tears) Translation:  Justin hit my head with a block.

Poor girl is still not getting great sleep.

Look at the dark circles under her eyes.  :(

"(Fill in the blank with a brother's name) messing me!"  Translation:  One of my brothers just did something I didn't like, so I'm trying to tell on them.

Doesn't everyone wear boots with their pajamas?!

Mommy:  Where are your kangaroo ears?

Rebekah:  I not kangaroo ears!

M:  Where is your monkey tail?

R:  I not monkey tail!

M:  Where are your elephant feet?

R:  I not elephant feet!

M:  Where is your pig nose?

R:  I not pig nose!

M:  Where is Rebekah Grace?

R:  I not Bekah Dace!

Followed by a look of complete confusion!  :)

I love my sunglasses!

Soccer Game!

I had to break from our usual Rebekah posts to brag a little on our Justin.  He played an absolutely smashing soccer game today, and we are so proud of him!!

 Rebekah posing at the soccer field.

Justin started the game in offense, but got switched to goalie just a few minutes into the first quarter when our starting goalie took a kick to the knee and had to sit out for a while.  Justin has been playing goalie since the beginning of the season, but it's not really his favorite position.  Until today.  :) The goalies wear the yellow covers over their jerseys so that they are easily identified.

 Justin sending the ball back down the field.

Justin played goalie for the rest of the first quarter and all of second quarter.  He had at least 8 saves, and the opposing team did not score one goal on him!  We were very excited because we played the top team in our league today!  We talked with Justin and his coach this afternoon, and Justin is probably going to start playing goal more often.  He really gained a lot of confidence today, and he is just plain good at it!  :)

Justin going after the ball in middle position.

Justin sat out the third quarter (they try to rest each of the players for one quarter) and came back in the fourth quarter playing mid-field.  He also did great in that position!

The video shows Justin making two of his saves today.  Pardon all the screaming and cheering in the background.  We tend to get a little excited!  :)

Nancy

Our Prissy Tomboy

As it happened, I've gotten some really cute pictures of Rebekah showing her tomboy side recently.  I have to confess, she comes by it honestly.  I still like to get out and play a good game of almost any sport (any sport that doesn't require me to balance on a thin blade, anyway!).  And let's face it, with four older brothers, this girl had better learn to like sports!  :)

One of Rebekah's therapy goals is to throw a ball a distance of five feet, and also to catch a ball thrown to her from a distance of five feet.  Admittedly, the throwing goal is referring more to something the size of a tennis ball, but practice is practice, right?!  The boys were playing (nerf) football in the living room last week, and Rebekah had to join in.  After I looked at the pictures I realized that Rebekah throws like a *ahem* ..... girl.  This Mommy is hanging her head in shame.  We'll work on it, I promise!  :)  But at this point if she has to granny-throw, I'll take it!

No, I did not photoshop the above picture.  Rebekah truly threw one direction and the ball went in the complete opposite direction.  I was almost laughing too hard to snap the picture!  :)  Bekah loves nothing more than to be included with her brothers, no matter what they are doing!  She asks every day if it is soccer practice day.  Possibly some of that is related to the fact that she loves to get in the van and go anywhere, but still, she loves to do what her brothers are doing.

In other therapy goals, Rebekah is still practicing her stair climbing, standing on one foot, running, and jumping with two feet off the ground (at the same time, preferably!).  We are seeing steady progress, but Rebekah is really being held back by her lack of endurance right now.  We're hoping that some good days of pool therapy will help to build her muscles back as well as increase her stamina.  She loves to be in the water so much that it isn't "work" to work in the pool.  :)  We are working on getting some funding to take Rebekah to our local pool a couple of times a week through the summer.  Rebekah's therapist indicated that it would be a huge benefit for Rebekah to have the additional time in the pool.  If you think of it, please add this request to your prayer list.  I am really hoping that the funding will go through and make it possible!

Look, I even wear my brother's baseball hat!  :)  Seriously, Caleb was SO upset to see Bekah wearing his hat.  Now before you get too sympathetic with Caleb, let me explain that he has at least 3 other hats, and he cannot possibly wear them all at the same time.  Rebekah has outgrown her cute little pink ball cap, so we convinced a rather reluctant Caleb to share one of his hats with Rebekah. I just laughed and informed him to wait a few years.  Rebekah will be borrowing his hats, his shorts, his shirts, and anything else that she finds in his closet!  :)  Caleb didn't find that as amusing as I did, for some reason!

Rebekah is also doing well in speech therapy, although I am just beginning to realize how far we have to go.  I've always thought she had above average speech for her age (certainly compared to her brothers!), and she does have an amazing vocabulary!  The downside is that her speech is hyper-nasal and she has some articulation dysfunction.  Her biggest problems are leaving the beginning sounds off words, and of course sounding like she's talking through her nose (think of the word "today" sounding like noo-nay).  We were told to expect the nasal speech because of the formation of her palate and the back of her mouth.  This is all part of her genetic disorder.  As we've been working on sounds over the last few weeks, though, I realize that it isn't going to be a few weeks of therapy and she will learn the correct speech.  This is going to take months, if not years.  She is having a very difficult time even positioning her tongue in the right place to begin to make the sounds correctly.  If I've given you the impression that her speech is unintelligible, forgive me.  I can understand probably 90% or better of what she says.  But now I realize that I've just gotten adjusted to Rebekah's speech patterns, and I truly don't even realize when she's saying things incorrectly.  Speech therapy is a little bit of training for both Rebekah and Mommy!  :)

And how does Rebekah's paralyzed vocal cord play into her speech, you ask?  Well, it doesn't really change any of the sounds she makes.  It just makes it that much harder to hear her sounds.  It's similar to turning the volume on your radio or TV down to about half of what you normally set it at.  You can still hear much of what is said, but you will miss some of the softer sounds and inflections.  There is nothing that therapy can do to "fix" or correct Rebekah's vocal cord.  However, the therapy will teach Rebekah to say the sounds correctly, no matter what the volume is.  I know several people have asked about that, so I hope I've explained it clearly.  Stay tuned for another post about Rebekah's latest vocal cord scope.  :)

Nancy

Sleep Updates

Wow! I can't believe it's been a few weeks since I've last updated!  Time flies when you're having fun (or when you're just really, really busy!).  Last Wednesday, Dr. G finally called to give us the report of Rebekah's most recent sleep study.  

Dr. G started the phone call by saying, "I'm not really sure what to tell you because Rebekah did not respond to anything like I thought she would."  Yikes!  We have a really complicated little girl!

 Cute little sweetheart!

So the CPAP trial was a complete failure.  From what I could tell, Rebekah was hyperventilating because of the pressure of the air blowing in her face.  She was absolutely terrified because she couldn't exhale.  Once they switched Rebekah to a BiPAP, she did relax and was able to rest better.  *Translation:  She slept in 15-20 minute intervals over the next 5 hours.*  Finally around 5am they took off the "elephant" mask and put her on a nasal cannula for the remaining two hours of the study.  Finally, we were able to get more than 15 minutes of sleep at a time!  :)

Bekah loved playing in the rain the other day.

So the final results of the sleep study are....inconclusive.  Rebekah had absolutely no apnea events on the BiPAP, which is great!  However, her oxygen was very unstable and she had multiple episodes of desatting, which disrupted her sleep.  On the flip side, Rebekah did well on the high-flow oxygen setting at 2 liters per minute (LPM), and her oxygen level remained at 98% for the entire time.  She had no obstructive apnea events, although she did have an average of 10 central apnea events an hour, the longest being 16 seconds.  So the big question is which is better, the BiPAP or high-flow oxygen?!  (And for the record, I asked about combining the two.  It's a no-go.  The pressure would be too great, according to Dr. G).

 We've been enjoying warm weather and outside playtime!

Dr. G was very confused and puzzled by Rebekah's results.  Based on Rebekah's central events in the first sleep study, he was fairly confident that Rebekah's central events were caused by a drop in her carbon dioxide (CO2) levels.  However, when he put Rebekah on the high-flow cannula, her oxygen levels and CO2 levels both went up to the normal range, and the central events continued to occur.  Now he is not at all sure why the central events are occurring.

After a 30 minute discussion on the pros and cons of both options, we decided to continue with just the nasal cannula for now, but increase Rebekah's rate to 2LPM.  She has tolerated it well, although she does seem to be fairly restless at night still.  We are going to wait until we have the results of Rebekah's MRI, which is scheduled for March 28, and go from there.  It is possible that there could by a physical abnormality in the shape or structure of her skull that is putting pressure on areas that are causing her central apnea.  We certainly hope this isn't the case, but it is possible.  After the MRI, we will be better able to make decisions about where to go with Rebekah's apnea treatment.

Mommy, I stuck!

So that's pretty much the sleep updates for now.  Treatment for sleep apnea is certainly not a sprint! It's a full on marathon, and we are trying to be patient as we see what works and what doesn't work for our little sweetheart.  We would certainly appreciate your prayers for the upcoming MRI.  It will be done at the hospital in Greenville, and Rebekah will be sedated and intubated.  The good news is that it will be a light sedation, so Rebekah should wake up within a few minutes of the procedure.  We are praying for a good, clear scan that will show any areas that could be potential problems.

Hopefully in the next day or two I will be able to update about Rebekah's vocal chord scope.  I thought about adding it in with this post, but it deserves a post all on it's own.  As I said before, Rebekah is one complicated little girl!  :)

Nancy