Home sweet home.....Almost

I was hoping to have a different post for you this morning. One that talked about how we packed up all of our belongings and took them home. However, it seems Miss Rebekah had different plans. Maybe she heard that her favorite nurse would be back today and wanted to see her one more time. :)

Regardless of the reason, we are still at the hospital. We were seriously within hours of being discharged when Rebekah's temperature climbed and she started retching and gagging. We still have no explanation for the gagging, but did find out that the temperature is due to an ear infection.

The doctor on call Sunday had checked Rebekah's ears and considered the possibility that Rebekah may have an ear infection, but no one wanted to jump to antibiotics too quickly, given Rebekah's problems with c. diff. However, after two days, the ears seem to be worse, not better, so we plunged ahead with amoxicillan. Hopefully it won't cause a relapse of the c. diff!!

All of that said, it is possible, not even probable or likely, just possible that we may get to go home later today. If we do, great!! If not, I'll be typing another similar post tomorrow morning! :) Enjoy your day everyone!

Nancy

Long Awaited Update

Yes, I know, Rebekah's adoring fans are longing for an update! :) So, I will do my best to fill you all in.

Rebekah came home from the hospital on the 31st of January through ice and snow. Although nowhere near the amount of snow that was predicted, the boys still enjoyed the inch or two that we did have and were very excited that Monday was declared a snow day.

Aaron, Caleb, Mommy, Justin, Daddy, Rebekah and Zachary

As you can well imagine, everyone was excited to have Rebekah back home. The boys practically fought each other over who would get to hold Rebekah and help with her. In a good way, of course! :)

Rebekah did very well for the first week or so that she was home. On Tuesday, we had a cardiology appointment with Dr. Lucas. Rebekah's heart function continues to look good, and we are so pleased by that. At least the extra stress of trying to breath has not had an effect on her heart. We do have a new date scheduled for Rebekah's heart catheterization. If all goes as planned, we will be leaving for Charleston on March 8th, to have the catheterization done on Tuesday, March 9.

Zachary and Rebekah

We also saw Rebekah's pediatrician on Thursday of last week. Rebekah has been exhibiting some symptoms of c. diff once again, so she is back on Flagyl to treat it. Incidentally, during Rebekah's GI appointment today, the nurse practitioner said that c. diff is even harder to get rid of (and easier to relapse!) in kids who have a compromised immune system. That could explain why Rebekah is fighting it again so soon after we thought she was over it. Anyway, our pediatrician also decided that Rebekah should remain on oxygen until we have the heart catheterization in March. He feels that since Rebekah really couldn't get off in the hospital, he would be more comfortable waiting to see what the doctors in Charleston decide about the need for oxygen. As it turns out, he made the right decision!

Justin and Rebekah

Now fast forward to this past Sunday. Rebekah started working a little harder to breathe and seemed to be struggling a bit more. Nothing major, no severe distress, just a little heavier, faster breathing now and then. But, it was enough for me to notice....and enough to keep noticing it throughout Monday when she definitely started sliding downhill.

Aaron and Rebekah

So this morning I called our pediatrician and explained what I had been watching the past couple of days. By today, Rebekah was definitely having brief periods of moderate distress - tight coughing, wheezing, significant retractions and fast, heavy breathing. Dr. DeMoss called in a prescription for an oral steroid to help open Rebekah's airways to see if that made a difference. Then we went to our scheduled GI appointment this afternoon. From a feeding standpoint, Rebekah is doing well. The nurse practitioner made only some minor increases in the amount of formula Rebekah is getting in her overnight feeds.

Caleb, Daddy and Rebekah

Our nurse practitioner listened to Rebekah's breathing and watched her (at that time) mild respiratory distress and decided to order a chest x-ray while we were there. Radiology is in the same building, so it would save us a trip to the hospital if our pediatrician had decided to have an x-ray done. The x-rays are still clear - no different from the last x-ray we had taken at the hospital before we left. That's good news! However, when the nurse practitioner checked Rebekah's O2 sats, we found that she was only barely satting around 80% and frequently dipping to 77-78%. And that was with the 200cc's of oxygen she was using. So, our NP called Dr. DeMoss and he decided to increase Rebekah's oxygen to 300cc's, continue the oral steroid for 24 hours and see if there is any change - hopefully for the better!

All dressed up!

Tomorrow we have an appointment with the infectious disease doctor. He follows Rebekah's immune system and troubleshoots any potential problems we may have with her low immunity. We will be re-checking her O2 sats while we are there to see how we are tomorrow and then a decision can be made to continue the course of treatment we are on, or return to the hospital. So far, increasing the oxygen has seemed to do a lot to relax Bekah's breathing tonight. She isn't struggling as much and looks better overall. We will see what tomorrow brings!

Oh, Rebekah was weighed and measured at her appointment today. This is the "official" weight and measurement that we compare using the same equipment each time. Rebekah is now 11 pounds and 8 ounces and is 24 inches long. Accounting for a three week stay in the hospital, I would say that's not too bad!

For tonight, we are going to rest (hopefully) and keep a close eye on Rebekah. If there is a change in the amount of oxygen Rebekah needs (for the worse), or if her distress worsens in any way, we have orders to immediately head to the hospital. I'm hoping the increased oxygen and steroids will help keep us at home this time around!

Please keep Rebekah in your prayers, and specifically that she will be able to fight this respiratory illness. Also, please keep our friends, Erin and Milo, in your prayers as they are adjusting to life without their sweet Josiah.

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