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

Sleep Study Results Part 2

Now where did I leave off?  :)  There were just a few other things from Rebekah's sleep study results that I wanted to share (mostly just so I can look back and reference the information one day if I need to).

One good observation that Dr. G made is that Rebekah's carbon dioxide (CO2) levels are on the low side of normal.  Actually, in some cases, they were below normal.  Part of the sleep study is measuring the amount of CO2 that the body expels each time we breathe out.  For a lot of kids (maybe adults too?) with central apnea, they retain too much CO2, so their levels are quite high.  This can lead to more "events."  Honestly, Dr. G told me at our initial consultation that he anticipated finding Rebekah's CO2 levels to be high, and he gave me a couple of treatment options for that.  He was quite surprised at how low the levels were, and showed me that the lower the CO2 levels were, the more events Rebekah had.  So, one of the goals Dr. G has is to actually increase the amount of CO2 that Rebekah retains, in the hope that it will decrease the number of events that she is having.  One of the ways Dr. G wants to increase the CO2 is by increasing the amount of oxygen Rebekah is on overnight.  Rebekah has been on 0.5 liters of oxygen for a long time now - well over a year, and that is a good therapeutic level for her pulmonary hypertension.  However, Dr. G wants to "pin her to the ceiling" (his words, not mine) with oxygen in the hopes that the more oxygen going in, the more her CO2 levels will rise and hopefully the less apnea we will see.  It sure is worth a try!  So during Rebekah's next sleep study they will be trying her out on 1.5 or 2.0 liters of oxygen to see if that makes any measurable difference in the number of apnea events that we see.

Baby in a Box!  :)

Even though it appears that the central apnea is entirely, or at least in part, related to the CO2 levels in Rebekah's body, Dr. G is still recommending an MRI to rule out the possibility of any possible cranial or spinal malformations.  One in particular is Chiari (pronounced key-ARE-ee) Malformation, in which a piece of the skull is abnormally shaped and presses into the base of the brain or the brain stem.  Among other things, this could cause the type of central sleep apnea that we see in Rebekah.  Dr. G really doesn't think that we are going to find anything abnormal in the MRI, but with Rebekah's complicated medical history, he doesn't want to assume that the apnea is related to something else, without ruling out some brain and/or spine abnormalities.

Rebekah was given a small 

Hello Kitty suitcase on Sunday.

She is in love!

It will likely be late spring or early summer before the MRI is scheduled.  Dr. G wants Rebekah to be comfortable with her CPAP machine for a while, so that she can use it when she comes out of the sedation.  Yes, this MRI will involve sedation and intubation.  We would love to be able to schedule it when she is in Charleston for a heart cath or vocal cord scope.  We'll just have to see how the next couple of months play out and which doctors want to see her when.  We were told June or July for her next cath date, so we could potentially make it work if everyone can coordinate together.  What a blessing it would be to only have Rebekah intubated once and do both the cath and MRI at the same time!

I think that's everything I can remember from the sleep study.  I hope it's everything that we covered!  Rebekah has her first speech therapy on Thursday, so we would appreciate prayers that it goes well.  She should have had her first session last week, but we had to cancel due to sick brothers.  Hopefully everyone stays well between now and Thursday!

Please continue to pray for our little buddies at MUSC.  As far as I have heard, there have not been any significant changes today.  Especially remember their parents and families in prayer.  The days are agonizingly long when you are waiting, hoping for some sign of improvement.

Nancy