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

We're Home!

Thank you so much for all of the prayers, phone calls, texts and Facebook comments today! We are so blessed by all of our friends and family who care for our Rebekah!

Rebekah is standing!! She loves the pool!

Another favorite...music!

I wish that I could say Rebekah is doing much better, but she isn't. On a good note, she's not any worse, either! :) Rebekah continues to be on 1/2 liter of oxygen, and is resting comfortably with oxygen sats in the 70's. As Drew posted earlier, Rebekah's sats dropped rather quickly this morning into the lower 60's, and within an hour she went from happy and playing to very tired and lethargic. Several phone calls with the on-call cardiologist, and we were on our way to the Children's ER. Once we arrived at the ER, Rebekah had chest and abdominal x-rays, an EKG, and a panel of bloodwork. Thankfully, everything looks normal, meaning there is no infection or viral illness. It is the general consensus that Rebekah is outgrowing the band on her left pulmonary artery, and she is close to needing surgery to repair her heart. Rebekah's cardiology team had originally predicted that the surgery would not be necessary until next spring or summer, but Rebekah has grown rapidly (for Rebekah, anyway!) in the last three months. The growth is putting increased demands for oxygen on her heart and lungs, and it is becoming harder for her heart to pump an adequate amount of blood through that pulmonary band. We will get final confirmation of that diagnosis on Tuesday, but all indications are pointing toward surgery at this time.

Rebekah all dressed up for church before we had to leave for the ER.

Smiling for the camera! :)

That's the most recent news....now, let me try to tie up some loose ends from the last month. Rebekah had her final hearing evaluation done, and the result is no hearing loss!!! We were very excited to hear that! She will continue to be evaluated once every six months for the next year or two to make sure that fluid is not building up in her ears, but we should have no worries about her hearing. Rebekah's most recent visits to both her endocrinologist and her immunologist went very well. All of her labwork looked great, and the doctors were very pleased. We are certainly not out of the woods with the complications of DiGeorge Syndrome, but things are looking very well right now. This is a huge relief to us, especially if we are heading into surgery soon!

Great-grandma sent Rebekah a sock monkey and hand-made mittens.

Rebekah loved the monkey.....

.....and promptly used the mittens for a teething ring!

I promise she will actually wear them someday, Grandma!!

Rebekah loves to swing!

Someone has some cute dimples! :)

A perfect pouty face. Must have learned that one from Daddy......

Thankfully this is the face we see most often!

In developmental news, Rebekah is progressing in leaps and bounds! She has temporarily "graduated" from speech therapy for now. She will see her speech therapist on a consultative basis until she is closer to the age of two, when formal speech therapy can begin. As far as her feeding skills go, Rebekah has shown enough progress to not need therapy any more!! In occupational therapy, Rebekah is working on stacking blocks, coloring and pushing/pulling small levers, knobs and beads to strengthen her hands and arms. And she has also had some fun time with Play-Doh! Believe it or not, we still have not received Rebekah's stander, but I was promised that it shipped last week. We'll see if it comes in this week! Rebekah is doing well standing with someone supporting her. She is also crawling in her own way; we like to call it bunny hopping! :) This week we are adding a new therapy - aquatics!! The therapy center we go to has a pool for aquatic therapy, and Rebekah's physical therapist believes she will make great progress in the pool. So we will switch between regular "dry" physical therapy one week and aquatic physical therapy the next week. Rebekah loves the water, so I'm sure she will enjoy the pool.

All five monkeys! Beth, that is the little wagon you bought for Rebekah that came with sand toys. She actually rides around in it with her brothers pulling her. :)

Guess what?!!! I'm standing....with a little help! ;)

This movie shows off a little of Rebekah's "bunny hop" crawling. Caleb was watching the screen with me and keeps chattering about "Bekah" and "pictures." At the end, you can see Rebekah squinting and blinking. That's her "camera face." Anytime I pull out the camera, she does this cute squint/blink thing.....in anticipation of the flash, maybe? I think this girl has been photographed a lot.... :)

Thank you all again for your prayers for Rebekah and our family. Please pray for wisdom for Drew and I this week as we watch Rebekah closely, and for the doctors as they evaluate her heart on Tuesday. Also, please keep our boys (especially Zac and Justin) in prayer as they begin a new school year tomorrow.

Nancy

Time flies along when you are not looking. We have not kept up with posting as we would have like to, we have all had a really busy summer. Bekah has grown and changed so much this summer. She is crawling and doing well with therapy. She actually has taken a few small steps this week while holding her hands. She is trying to pull up but lacks the strength to pull herself up yet. I am sure Nancy will post more about our summer when she has time.

This morning things changed. Bekah's o2 sats have been jumping up and down for a couple of weeks now. She was sick with a little cold, when this started so we thought maybe it was part of her cold. She is well again and still having some trouble with her sats. We were told to let her doctors know if she needed to be on oxygen again and they at that point will do some closer looking. Well this morning Her Sats dropped below her cut off level for not being on oxygen. We have done all the calling of doctors and over an hour or so our happy playing girl has headed down hill. She was very playful this morning and has continued to crash and look sick as time went on. So we are headed to the ER to see what the doctors can find with her situation. We will update as we get more info this afternoon.

We are hoping this is just a down day for Bekah and that she will bounce back quick. As always we appreciate your praying for Bekah and our family.

-Drew

No clot!

Sorry to make you wait all night for information, but that's what we did in the ER! It was almost 2:00 in the morning before we got home, and I wasn't awake enough to coherently post.

Rebekah does not have a clot in her leg as far as the radiologist was able to tell. The doctors both in Greenville and at MUSC think that her artery is still spasming from the catheter being inserted. This is something that should go away over time, and actually, the doctors had thought that it would have stopped by now. The spasms contract the artery, decreasing blood flow to Rebekah's leg and foot and making it seem as if there is a clot. Her leg is cool to the touch and the pulse is weak in her left foot. We were sent home with instructions to watch the color of her leg and the capillary refill to make sure the spasming has not created a clot.

One thing that the radiologist did find was a fistula at the catheter insertion point. Probably what happened is when the catheter was inserted into Rebekah's artery, it nicked the vein at the insertion point. That created a little spot where the blood can flow between the vein and artery. It is not dangerous and should correct itself over time. The most Rebekah may feel is just a tingling sensation at that fistula site. Even if it never corrects itself, it will not pose any problems for Rebekah.

That's the news for now. Please pray for the spasms in Rebekah's artery to stop so the risk of clotting will diminish. Other than that, Rebekah is happy and back to her usual self!

Nancy

We are Gone again!

We hate to have to tell you this, but we are heading back to the hospital here in Greenville. We discovered today that Rebekah's left leg is cooler to the touch then her right leg. Also she has had a hard time with her sat monitor not picking up while the lead is on her left leg. This is something we were told to watch for after her heart cath. The left leg is the site where they put the cath in. There is a possibility that she may have developed a clot in her leg. At least this is what we were told could happen, so we have talked to MUSC and they wanted us to take her to the ER to have an sonogram done on her leg. They will be checking to see if there is a blood clot or not.

Hopefully they will figure out what is happening and be able to treat it with medication. I will update you further when I hear from Nancy.

For now the best we can do is up hold Nancy and Rebekah in prayer. The Lord knows all and will watch over them.

D