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

It's a Beautiful Day in the Neighborhood

Or, at least in our hospital room! The sun is shining, Rebekah has had some play time and is now working on taking a morning nap.

We had a good night - lots of sleep - until the resident from Pediatric Surgery came in at 5:45 (!!) to check Rebekah's g-tube. I'd like to know who sends these doctors on rounds before 6:00! Anyway, the Peds Surgery group has discussed Rebekah's tube and has come to the conclusion that they do not want to attempt using it again until all of the results from her blood work and stool cultures come back. According to our nurse, it takes 24 hours for the stool study to be completed, so we will not be using the g-tube today. We did not get those samples until close to 10:00 last night, and the doctor did not want to start using the tube at night, so it will be sometime tomorrow before we are given the green light to use it. At least, that is the plan right now. In another hour it may change, but that is our current plan.

Rebekah apparently woke up happy and in a very good mood! After the resident woke us so early, I sneaked Rebekah into my bed and we fell asleep for another cat nap. When Rebekah woke up, she was all smiles and playing. I laid her back in her crib so she could play with some of her toys, and she promptly rolled over onto her tummy - something she has never done before without at least a little help. The nurse and I were so excited to see her rolling! She played on her tummy for quite a while, then promptly rolled back over to her back, started sucking on her fingers and went to sleep.

On that note, I am going to sneak into the shower quick while Rebekah is sleeping. More updates to come as we get them!

Nancy

Forward, then back

This morning Rebekah was looking great, and I was really excited about the possibility of going home tomorrow, but now....not so much.

Rebekah is back on oxygen at 1/2 liter. It's not much at all, but her sats dipped to 68 this afternoon without warning and hovered in the low 70's for long enough that the respiratory therapist (RT) felt we needed her back on a bit of oxygen. Since then, she's been maintaining sats around 90. I asked the RT to listen to Rebekah's lungs, and she did hear some congestion, but no wheezing. That's good! I'm just hoping we're not heading down the same road we were on three weeks ago.

We are still not using the g-tube, nor will we be using it tonight. After discussing it with the doctor, he felt it would be better to run her feeds during the day tomorrow while more doctors and staff are on duty so that they can respond quickly if there is a problem. For now we are continuing to feed by mouth as Rebekah wants it, although she is still not eating as much as she was before we were admitted.

The doctors have ordered an amazing amount of labwork for Rebekah - things with more letters than I can count! She had blood drawn for several test and we are trying to collect stool samples to check for allergies, infections, bacteria and a lot of other things that I don't remember. Then we will be waiting to see what the results of those cultures are.

Based on all of that information, the doctor isn't even thinking of discharging Rebekah before Friday, and possibly not then. It will all depend on how well she does tomorrow during her tube feeding and on the results of her labwork. Until then, we get to hang out together and enjoy some snuggles!

Drew and I would like to say a huge thank you to everyone who has been helping out with the boys and with meals, both during this hospital visit and the last one. We are so blessed to have close friends and family to help, and it really takes some of the pressure off of us! That being said, please keep our boys in mind as you pray for Rebekah. Understandably, they are upset that their sister is back in the hospital and that Mommy is not at home. Grampy and Grammy arrived this afternoon, so at least the boys will be at home and back to more of their normal routine.

Much love,

Nancy