Cute Pictures!

Disclaimer: If you haven't read today's first post, this one will make no sense. Scroll down to read the post "Another New Plan" first.

We have tried step one of today's plan and the score so far is G-tube-2; Rebekah-0. We deflated the balloon and taped it down so we didn't lose the placement, and tried tube feedings beginning at 5cc's and hour. That means over the course of an hour, Rebekah would get what amounts to about a teaspoon of milk. Guess what!? It didn't work. After about an hour and 15 minutes, Rebekah was screaming, upset and her heart rate was elevated. So, our sweet nurse, Gail, is off to call the doctor to let him know and to double check that the next step is changing the tube itself.

In the meantime, before all of this happened, Rebekah was being Miss Cuteness herself. Enjoy the pictures and even a short video clip at the end (Hey, Drew, I finally figured out the video!).

Showing off the latest in high fashion hospital wear!

I lasted about five minutes playing in the bumbo before I got tired.

Sound asleep with my dolly. Look at how pudgy my arms are getting!

Look at how cute I am! Mommy really loves this picture!

Rebekah was being so cute playing in her crib! Right at the end when she starts to get fussy is about the time that we think her g-tube feeds were bothering her. From there it went downhill until we shut the pump off. About five minutes after turning the pump off, she was perfectly calm and went to sleep. Please pray that the doctors will figure this out!!

Drew and I are actually getting dressed up tonight to go to a work-related banquet (his work, not mine! :). A sweet nurse friend of ours who is not working tonight has offered to come and sit with Rebekah while we are gone. It will be fun to get out and do something besides sit in Rebekah's room (although I wouldn't trade being with her for anything!). If we can, I'll try to get a couple of pictures. I haven't gotten this dressed up in a long time!

Nancy

Another New Plan

Wow! I think I've lost track of which plan we are on now. It feels like a couple of dozen so far, although I know it hasn't been that many.

I look so cute with my leg warmers!

When we used Rebekah's g-tube last night with breast milk in it, she had the same reaction to it that she has had all along - extreme irritability and fussiness, and tenderness around her belly especially around the g-tube. That little test basically confirmed in Dr. Darby's mind that the g-tube really is the problem.

However, right now Peds Surgery does not believe that Rebekah has a g-tube problem. She has had x-rays and contrast studies done that do not show any problems with the g-tube. They are contending that she has a problem with c. diff. or with her formula or something else. So, Rebekah's doctor's goal is to prove to Peds Surgery that 1) Rebekah has a problem with her g-tube and 2) what the problem is.

I'm a happy girl as long as you leave my tube alone!

This morning, we have come up with yet another process-of-elimination plan. We are going to deflate the balloon in Rebekah's g-tube and proceed with a tube feeding (of breast milk or Ellecare since we know that either one works fine). If Rebekah does fine with the balloon deflated, we are going to assume that the balloon is either pressing on something uncomfortable or blocking the pyloric (the opening from the stomach into the intestines through which food passes). We would then re-inflate the balloon with a small amount of water (3cc's instead of the normal 5cc's) and repeat the test. If we can use the tube with a partially deflated balloon for a week or two, that would be enough to get us by until Rebekah's new (correctly-sized) g-tube comes in. The new size is actually a special order because it is so small, so it is taking 2-3 weeks for it to be made and shipped.

If the deflated balloon still results in the same fussiness and irritability, we are going to try replacing the g-tube altogether with Rebekah's spare tube and see what happens.

Look, Mrs. Beth! I'm playing with my feet!

These are the two experiments that we are going to try today. If either of them works, then we will be good and will only stay an additional 24 hours to run through an entire feeding schedule to make sure there are no other problems that crop up. If either of the experiments fail, we will be back to the drawing board tomorrow to come up with a new plan.

Rebekah's doctors are determined, though, to get to the bottom of the issue and resolve it no matter how long it takes. I'm just hoping for sooner, rather than later! :)

Nancy

Today is a new day!

Sorry I haven't updated earlier today! I know you are all wondering what is happening after the last updates last night. I didn't update because, frankly, we didn't have any news to update with! Rebekah remains off of her g-tube feeds, and we have really just been hanging out waiting to see her doctor.

Which brings us up to our doctor....he was just here a few minutes ago, and I think we have a new plan. Although, it is subject to change at any time, remember?! By the way, I know I have said it before, but we are truly blessed with some of the best doctors in the area! Dr. Darby walked in, sat down in the recliner and said "let's figure this out together." He is just as determined to come up with a solution to this problem as we are! We are so grateful for the doctors, residents, nurses and other staff here and for the way that they truly care for each patient. We have never felt like just another chart number or bed number. It is a great feeling especially when you have a child as medically complicated as Rebekah!

So, all of that to get to our new plan. It seems that Rebekah's problems are coming from either the g-tube itself or the Ellecare formula that we are using in the g-tube. Yes, she has c. diff. and is being treated for that, but Dr. Darby seems to think that if the c. diff. were bothering her digestive tract, then she would have the same reaction to breast milk going into her stomach by mouth as she has when Ellecare goes into her stomach through the g-tube. After a lot of discussion, we (Dr. Darby actually, I just nodded my head and agreed!) decided to switch things up a little to try to eliminate one or the other as a problem. So, unless the plan changes, Rebekah is going to get a little bit of Ellecare by mouth this afternoon to see what happens. She will also get a little bit of breast milk in her g-tube to see what happens there as well. If she tolerates the Ellecare by mouth, we can assume that the problems lie with her g-tube. If she tolerates the breast milk in the g-tube, we will assume that the problem is the Ellecare. If she tolerates both, I'm going to throw my hands in the air and scream! Okay, not really....maybe. Hopefully one of those trials will give us some information to come up with a solution we can work with.

Several weeks ago this would not have been too big of a deal because we were not using the g-tube prior to Rebekah's last hospital stay. However, since Dr. Darby put Rebekah on continuous nighttime feeding with the g-tube, she has gained a pound and a half. The continuous feeding was really working well and allowing Rebekah to grow faster than she ever has in her little life! We really need to find a solution that will allow us to use the g-tube with a higher calorie formula to get the extra nutrition to our little girl.

As I said, that is the current plan, and always subject to change. Dr. Darby is still going to consult with the GI (gastroenterology) doctors to see what other ideas they might have, so he may decide to do something differently after talking with them. I will update later to let everyone know how things are going!

Nancy

Answers

Second Update: Per doctor's orders, we have discontinued the feeds again. Rebekah had more blood drawn to see if anything else is going on, and we'll see what happens from here. We will not be resuming feeds until at least tomorrow morning, if then. Rebekah also will have consults tomorrow with Peds Surgery and GI to see what else they might find or if they have any other ideas.

Update: As of about 6:00 this evening, Rebekah's heart rate became elevated, her oxygen sats dropped, and she was increasingly uncomfortable and fussy. Our nurse noted the changes, as well, and is currently calling the doctor to find out what he wants to do. Rebekah has only been using the feeding tube about two and a half hours, and she has gotten about 12mL's of formula, so I'm not sure what will come next. I will update more when we hear back from the doctor.

Original post: After meeting with Rebekah's doctors early this afternoon, I finally feel like we have some answers....maybe! :)

One of Rebekah's stool samples came back positive for clostridium difficile, better known in medical circles as c. diff. Basically, it is a growth of the bad bacteria in the intestines and can have some potentially harmful side effects if not treated. So, Rebekah is on a seven-day regime of Flagyl, which is an antibiotic used to kill off the bad bacteria in order to allow the good bacteria to build up. There are several risk factors for contracting c. diff., and Rebekah meets almost all of them - except for being over the age of 65; she's not quite there yet! :)

Some of the risk factors that Rebekah has are: taking broad-spectrum antibiotics, especially for an extended period of time (she was on broad-spectrum during her last hospital stay), being hospitalized, having a weakened immune system and having previous abdominal surgery or gastrointestinal procedure. Now that she has had c. diff. once, she is more at risk for contracting it again, so it is the first thing that will be checked from now on when she has persistent diarrhea.

In honor of Daddy's birthday, I rolled over all by myself!

There shouldn't be an increased risk of exposure to c. diff. for the boys as they are all in good health and Rebekah is not potty-trained, so they are not sharing a toilet with her. We just need to be cautious of washing our hands immediately after changing Rebekah before changing Caleb's diapers.

I'm adorable!!

Rebekah is currently using her g-tube for a very small (5mL's per hour) amount of continuous feeds. See, I told you the plan was subject to change! Since we know what Rebekah's problem was and we are now treating it, the doctor thought we could safely start out using the tube slowly to see how things go. So far things are going well, and we are going to be working up another 5mL's every four hours through the night and into tomorrow. The new plan is to see how Rebekah does and possibly go home late tomorrow, or more likely early Saturday. Please pray that Rebekah gets over this c. diff. quickly and completely and doesn't catch anything else while she's here! We need her to be well for her heart catheterization on the 26th!

Nancy

Happy Birthday, Daddy!!

Daddy, I made a surprise for your birthday, and I'll give you a clue....it has something to do with the color blue!

Love,
Rebekah