Hospital Bound

The last week or so the boys have had a virus cold or something like the flu with high fevers and congestion.

Well Miss Bekah has come down with it now. She has a mild ear infection also. So we were to the doctor's today and were going home on meds to recover. All was normal thru most of the day. This evening and into bed time Miss Bekah seemed to head down hill and then crashed at bed time. Her O2 sats have dropped below her allowed norms and she is having a hard time breathing. Along with this the also has pretty good fever.

So after call her cardiologists they are admitting her to the hospital to get her some help.

Please pray she will get over this quick. Also pray for Nancy as she is staying in the hospital with Bekah. Pray the boys to continue to get over their colds.

I want to say thank you to some dear friends who are helping out with the boys, so that I don't have to take anytime off from school. We appreciate all their help.

We will update you when we have more information on what is happening with Bekah.

D

Thank you

I just wanted to post a simple thank you to all who have given to the Rebekah Grace Fund.

We like to keep this blog about Rebekah and the great things the Lord is doing in her life and ours. One of those is the Lord providing for our family and Rebekah's needs. It is such a blessing to know that when we are not sure how to take care of our obligations the Lord has a way already planned. His provision always comes at just the right moment when we need it most. We thank him for his loving care of us and for his working in hearts to lead you to help Rebekah and our family in his perfect timing.

D

Enjoying the sunshine!

Home Again!

Thank you all so much for the prayers for Rebekah and our family during her heart catheterization. We left MUSC around 11:00 this morning and made it about halfway home before stopping for lunch. We made it home around 3:30. Rebekah slept from MUSC until we stopped for lunch, and she slept for about an hour after lunch. I think it was really good for her to be able to relax and get some much-needed sleep.

One thing that I realized I forgot to mention in last night's post is that the doctors recommended that Rebekah stay on her oxygen indefinitely. They firmly believe that the oxygen is doing some good, so tanks and tubes will remain in Rebekah's future.

As of bedtime tonight, Rebekah had not had another fever. We are hoping not to see any more!

Tomorrow Rebekah will be going to see her cardiologist for a check-up. As far as I know, she will also have an echo. Dr. Lucas likes to put his eyes on his heart patients when they come back from MUSC so he is familiar with how they look after a procedure. That way, if there are any problems that come up, he knows exactly how things looked when we got home.

Rebekah is on an every eight-hour schedule with her Sildanefil. We are going to try to make it 11p, 7a, and 3p. Any other schedule has me getting up in the middle of the night, or very early in the morning. We'll see how well it works.

Please pray for our safety tomorrow. We are supposed to get an insane amount of rain, leading to flooding conditions. That's the kind of weather I would rather watch from the comforts of our dry home! :) Also, please pray that Rebekah's fevers will remain gone!

Rebekah walking last week. She's getting much more stable!

Nancy

Just a short post to

Just a short post to say we're heading home! No fevers after midnight so we got our discharge papers. Will update more later.

Catheterization Recap

Wow! What a day! Overall, we are thrilled with Rebekah's cath and so pleased with what Dr. Baker was able to do. He found two narrowed areas, one at each end of Rebekah's left pulmonary artery (LPA). (The conduit that was put in during the Truncus Repair is functioning as Rebekah's pulmonary artery. Her left pulmonary attaches to her left lung at one end and attaches to the conduit at the other end. She is missing her right pulmonary artery.) The narrowing at the lung end of the LPA is a narrowing of tissue, and Dr. Baker was able to balloon that open a bit more. The narrowing at the conduit end of the LPA is a narrowing in the muscle of the heart itself. That cannot be ballooned or stent-ed (is that a word??). In order to expand the LPA on the heart end of the conduit, Rebekah will need open heart surgery. To further complicate matters, the location of the LPA on the conduit is very, very near to Rebekah's graft valve that is functioning wonderfully right now. Potentially, any surgery on the heart muscle in that location has the possibility of damaging that valve and causing it to leak. With Rebekah's already high pressures, that would be very, very bad.

SO....do we have a plan yet? Well, tentatively we do. Dr. Baker (cath doctor) would like to see Rebekah make it another six months (at minimum) with the ballooning and an additional medication. The pressures in Rebekah's heart are still high, and while the ballooning was good, it did not resolve the problem. The bottom line is that Rebekah WILL need open heart surgery sometime within the next year. The exact timing of that surgery will largely depend upon how the new medication works in lowering her pulmonary hypertension, and how long her heart tolerates the added stress and continues to remain "happy."

Dr. Baker believes (and so do we!) that Rebekah's case is too complex for his decision alone. Sometime in the next week or two, he will be presenting Rebekah at conference. This is a meeting of all of the cardiac docs, the cath docs, Dr. Bradley and his partner (I can't remember his name), and anyone else directly involved in the management of these heart babies. That is why I say the plan we have right now is tentative. After reviewing the results of the cath lab, Dr. Bradley could make changes, opt for an earlier surgery date, or change the plan altogether. If there are any changes made, we should hear about them in a couple of weeks.

As for the medication that Rebekah will be taking, it is Sildenafil, a drug originally marketed for reducing pulmonary arterial hypertension (exactly what Rebekah has!). Most of you will recognize the drug by the name Viagra, marketed for something completely different. There are relatively few side-effects, and a relatively low occurrence of those side-effects when used as originally intended. As Dr. Baker said, when playing in this game, the question is not, "Does it have side-effects?" but rather "Do the benefits outweigh any potential risks/side effects?" The cardiologists believe that in Rebekah's particular case, the Sildenafil has a good chance of lowering Rebekah's hypertension enough to buy us a few more months before she will need surgery again.

As of tonight, Rebekah is still fighting fevers. She was fever-free this morning, and remained fever-free during her cath. However, she flirted with a low-grade fever off and on in the recovery unit, and her fever began climbing again around 8:00 this evening. Rebekah's nurse, Christie, checked her temperature a little while ago, and it was 101.9 after Rebekah had been given Tylenol just a little over an hour earlier. This is definitely not the trend we want to see! A low-grade fever could be attributed to teething, but we are getting high enough that there is concern that something else might be going on. We would love to blame the fever on anesthesia; after all, Rebekah ran fevers for a week after her last open heart surgery. However, the fact remains that Rebekah had a fever last night prior to her admission. We are currently waiting for the attending to give us some input and direction. It is possible that they may draw labs, test for flu, and/or give another dose of antibiotics as an immune system booster. I am praying that Rebekah rests well tonight, despite the fever. She was up frequently last night, and so were we!

So, please keep us all in prayer tonight and tomorrow. Obviously, we would like to get back home tomorrow, but not if Rebekah still needs to be here. The last thing we want to do is go home tomorrow and have Rebekah's temperature shoot up and be sent back in "emergency" status. Please pray for wisdom for the doctors so they will be able to figure out what is going on.

Nancy

P. S. In case you missed it earlier today, click here to read Rebekah's ice cream post. It's a real treat! :)

Update #4

Rebekah is out of the cath lab and back in recovery. We are about to go back to see her. Thank you all for praying! We'll be updating later as we have information/opportunity.

Nancy

Update #3

Wow!! We just got a text saying the doctors are ballooning Rebekah's left pulmonary artery! This is the small(er) artery that goes from the new conduit (that was placed in November) to her left lung. This is exciting news! Rebekah's cardiologist in Greenville, and her surgeon here in Charleston, did not feel that there would be any narrowing that they would be able to balloon or stent. This is terrific! It may not completely explain, or reverse the high pressures that Rebekah has had, but it will certainly help. If her LPA (left pulmonary artery) was severely restricted, it could be the culprit for the high pressures. Oh, I can't wait to talk to Dr. Baker and find out what the pressures look like after the cath is done! Keep praying for our little girl!

Nancy

Update #2

Rebekah is doing well. The catheters are in and the doctor is getting measurements and pressures. Please pray that he is able to get accurate pressures - this is the main reason Rebekah is having the cath today!

Nancy

P.S. Scroll down for the story of Rebekah and her ice cream. :)

Ice Cream Etiquette

This is the story of a little girl and an ice cream sandwich. Her first ice cream sandwich, to be exact. And, oh, what a story it is! Actually, there is really very little that can be told about this story, so I will let Rebekah share the pictures and video. Enjoy!

We're testing the waters here.

Never had one of these before.

Do I bite it? Lick it? Poke it? Eat it? Play with it?

Hmmm....seems like licking and biting seem to work well.

Or, poking and pinching, whichever you prefer.

Of course, the mash and smash method works well, too!

All in all, the best method is the one that gets ice cream into my mouth!

Which gets my mouth (and the rest of me) into the bath!

Oh, how I love bath time!

Rebekah's wrap-up: bye-bye, bubbles and being silly

Pretty pink piggies playing in a bubbly bath.

And that, my friends, is the story of a little girl and an ice cream sandwich.

Her first ice cream sandwich, to be exact.

Produced by Rebekah Ellis

Edited by Mommy

Update #1

Good Morning! Even though it's only 9:00, I feel like it's almost lunch time! I guess that's what happens when one gets up at 4:30. :) Rebekah didn't have a great night. I'm not sure if it was the fever, if she wasn't feeling well, or if it was just being in a strange place, but she was very restless and fussy all night. Drew and I were both up with her several times in the night. Add to that the fact that we had to stop her formula feed at midnight and switch it to Pedialyte (clear liquids) until 3:00. After that she wasn't able to have anything at all. Rebekah woke up signing "eat," "more," and "milk," and she repeatedly said "nack" (snack) and "pepple" (pretzel). I felt so bad that she couldn't even have a drink of milk!

Just being cute!

Thankfully everything was running on schedule this morning, and we really did not have to wait long with Rebekah. We checked into the hospital at 6:15 and were up in the same-day observation room by 6:30. Rebekah has a great nurse today, one that we have not had before. He is going to be one of our favorites! Daniel (nurse) and a couple of other nurses got all of Rebekah's current stats and then started in with all the questions that we have to answer each time Rebekah is admitted.

Hello, everyone!

Thank you all for your prayers last night and this morning. Rebekah did not have a fever this morning when she woke up. We discussed the fever with Rebekah's team this morning, and they are going to keep a close watch on her to make sure nothing develops. Rebekah is teething, so we're hoping that it might simply be that. Time will tell, I'm sure!

Baby and I are Charleston-bound!

We received our first update at 9:00, and Rebekah was doing well. Since Rebekah was first case this morning, they were able to take her to the cath lab and place the necessary IV's under sedation. That was a huge relief to us because Rebekah is a very difficult stick. She has extremely tiny veins that twist like a bowl of angel hair pasta. We are thankful that at least she was sedated before placing the IV's. As of 9:00, the doctors had inserted the first catheter in her right leg.

Thank you all for praying! We will pass along further updates as we get them!

Nancy

Rebekah was taken to the

Rebekah was taken to the cath lab around 7:30. No fever this morning! Update in about an hour.

Rebekah Factor

We are in Charleston! After a very uneventful trip down, we arrived around 7:00 this evening. After getting supper and filling the truck, we checked into our hotel. When we got Rebekah out of her car seat, I realized that she was running a fever. Of course, we didn't have a thermometer with us, so we gave her some generic tylenol and Drew went to the nearest drugstore to get a thermometer. About an hour after we gave her the tylenol her fever was down to 99.5. I have no idea what this will do to the cath plan, but we will find out tomorrow.

We will be checking in to MUSC at 6:15 in the morning. If the cath goes ahead as scheduled, Rebekah will be first case at 7:30. I'm not sure what the plan will be if her fever goes up during the night. Right now she is very fussy and tired.

We will keep you all updated on the blog and facebook. Please pray for Rebekah; she really needs this cath to figure out a plan for lowering the pressures in her heart.

Nancy

Officially 20 months!

Rebekah has been her adorably cute self this week! It seems like every time I turn around, she is saying a new word, or trying something new. :) Since February didn't have 29 days this year, Rebekah gets to be 19 months old for another month, right? I guess not. So, it's fair to say that sometime in the last couple of days Rebekah hit the 20 month milestone.

Today was a great day in physical therapy. For various reasons, we have not been to PT in three weeks. In fact, the last time we were at PT, Rebekah was just starting to take 3-4 steps in between DeeAnn and me. What a difference three weeks can make! DeeAnn was thrilled to see Rebekah walking all over the gym! Not only was Rebekah walking, but she was climbing in and out of the ball pit, climbing onto the small trampoline, walking up the ramp to the large trampoline, and generally trying out anything she put her mind to. It is just amazing to watch her growing stronger and developing more each day!

Tomorrow Rebekah is supposed to be catching up on her 18 month shots. I called today and asked to see the doctor instead (normally we would just see the nurse for shots). Rebekah has been pulling, poking and generally messing with her ears more the last two or three days, and I want to make sure the ear infection from last week is cleared up. Especially since we are heading for Charleston this weekend.

Thankfully, I think we have all gotten rid of the cold that we seemed to be sharing for the last few weeks. Except for the occasional cough, there are no signs of that cold bug anywhere in the house! I guess Lysol and fresh air did the trick! :)

I have some (hopefully) super-cute pictures and some more videos to download from my camera. I've been procrastinating because there is so much video that I know it's going to take quite a while to download. Maybe actually writing it will be a motivation for me to download it so I can post some new picture and video on the blog. :)

Hope you are all having a great week! I can't believe it's half over. Yikes! I have too much to do in the next three days!!

Nancy