A Short Update

For those of you who have been following Rachel's story, we ask for prayer once again. You can read the long version on Rachel's blog, but the short version is that she has developed an atrial flutter (her heart is not beating correctly) that could lead to blood clots forming. She will be having a scope procedure done in the OR under anesthesia tomorrow to check for any clots that may have potentially already formed. There are tremendous risks for Rachel to be under anesthesia tomorrow, but it is the only choice her parents are left with. Please be in prayer for their family during this very stressful time.

In Rebekah news, we will be getting test results back this week to try to determine why Rebekah's fatigue seems to be getting worse, not better. Rebekah had done really well in the months following surgery, but in the last 6-8 weeks, she has required more sleep and has generally be tiring out more easily than before. To give you a few examples, Rebekah rarely goes up or down stairs on her own anymore. She cries at the top or bottom, or comes to find one of us to carry her up or down. Also, Rebekah had been in physical therapy for one hour every other week, but three weeks ago, we made the decision to switch back to every week because Rebekah is just exhausted and laying down after 30-45 minutes of therapy. And the sleep! A usual day for Rebekah consists of getting up around 8, playing until lunchtime, going to bed for a nap between 12:00 and 1:00, sleeping until 5:00, getting up for dinner and maybe a little playtime, and going back to bed around 7:00. Now, of course, there are variations to this schedule depending on what is happening for that day, but this is pretty much the way Rebekah likes her schedule when we are home and have nothing planned.

So after talking with Dr. Lucas (Rebekah's cardiologist), Rebekah went to the pediatrician for a check-up and a full blood work-up. They are looking for anything related to thyroid, hemoglobin, mono (??!!) and several other things that I'm not even sure of. Basically, Dr. Lucas wants to rule out any non-cardiac possibilities before we start looking more seriously at Rebekah's heart as a cause for the fatigue. If all the tests come back negative, we will most likely see Dr. Lucas this week to see if anything has changed since Rebekah's last echo. If one or more of the test results show a problem, obviously we will address it once we know what it is. So I'm really hoping that something shows up in the blood work to give us something to treat. Otherwise, we may be looking at a trip to Charleston for a catheterization much sooner than we had planned.

Thanks for praying!

Nancy

Guess my short update wasn't as short as I thought it was going to be! :)

Not to leave you hanging....

I just realized that in all of yesterday's craziness, I never posted an update on Lukas! He was out of surgery by mid-afternoon, and the surgery went very well. In fact, Lukas was doing so well that the doctors were able to close his chest today! (If you remember, Rebekah's chest was open for about 48 hours post-surgery due to the swelling.) It seems like things are going great for Lukas. Please continue to pray that he stays infection-free during his recovery time and that he gets masters the skills he needs to eat so he can go home!

And because every good post includes a picture of the little girly......

Nancy

Praises!

We are so thankful for all of your prayers this morning. The surgeon was able to replace Rebekah's g-tube in his office, so Rebekah will not need surgery to re-insert it. It was not a very pleasant procedure, but they did their best to make it as comfortable as possible for Rebekah. She now has a brand new g-tube and is back to playing like nothing ever happened.

I cannot say thank you enough to all of you who stopped what you were doing and prayed for the surgeons and for Rebekah this morning. We felt those prayers as they worked to get her g-tube back in! Please continue to pray for baby Lukas as he will be in surgery still for several more hours today. So far the surgery has been going well, and I know they would appreciate your continued prayers.

Nancy

PLEASE PRAY!

When we went to get Rebekah from her crib this morning Drew realized that her g-tube had come out of her stomach overnight. It is held in place by a small, water-filled balloon on the inside of her stomach, and apparently that burst at some point overnight. I have tried to insert her replacement tube, and the stoma (opening in her stomach) is closed up too much for me to get it in. We are heading to her surgeon's office to attempt to replace the g-tube. Leaving it out at this point is not an option. Rebekah is almost completely dependent on that tube for nutrition. If it cannot be replaced in the surgeon's office, it will need to be surgically replaced. Please pray that they can get this tube back in.

Also, please remember to pray for Lukas and his family this morning as he will be in surgery most of the day.

Nancy

Pray for Lukas

Please keep our heart buddy, Lukas, and his family in your prayers. Lukas was born a couple of weeks ago with Truncus Arteriosus, like Rebekah. He was doing so well in the first few days that the doctors were discussing sending him home to grow a little before his Truncus repair surgery. However, in the last few days, Lukas has really been struggling to the point that he needed to be sedated and is on the ventilator to keep his body as relaxed as possible. With all that said, the doctors decided that he needs surgery soon, and have scheduled him for surgery tomorrow. I know their family would greatly appreciate your prayers tomorrow. I will try to update sometime tomorrow as I hear how things are going.

Also, Rachel is much more stable than she was a few weeks ago. She is still in the hospital, but the medications she is on seem to be helping her heart work more efficiently. Rachel is listed as 1A status on the transplant list, so when a heart becomes available, she will be one of the first in line to see if she is a match. Please pray for Rachel and her family. It is not an easy thing to know that someone else has to lose a loved one in order to save your child.

Rebekah is doing well, and we celebrated her birthday a little early when grandparents were in town yesterday. I am still sorting and editing pictures, but hopefully will have birthday pictures posted soon. There are some cute ones! :)

Nancy