Another Day, Another Doctor!

Answers!!! We finally have answers!!! Well, we sort of have answers....maybe....at least a plan for finding some answers.....you get the idea. :)

Yesterday Rebekah ran a low-grade fever off and on all day. Her heart rate was consistently higher than her normal, and she continued to have explosive diarrhea....like a clothing and bed change every single time.

From a respiratory standpoint, Rebekah is much better. She has not had any more wheezing and almost no more coughing. If she has been crying a lot or agitated, she will cough, but for the most part, even that has stopped. The big question remained, though, why we can't keep Rebekah's oxygen sats up even on a liter of oxygen. And, no, we haven't been able to wean it down any. If it is turned down a little, we end up turning it back up to a liter within an hour or less. It appears that a liter of oxygen is just going to be Rebekah's new normal from now until her heart surgery. Her little body just can't seem to work without it.

Today our goal was to figure out what is causing Rebekah's GI problems. The c. diff was negative and the rotavirus was negative; that's a good thing! There are a few other things that are still being tested that will take a few days to come back. After meeting the GI doctor today, we are going to rework Rebekah's feeding plan. Again. The high-calorie formula that Rebekah is on may have proved to be too much for her system when on feeds around the clock. So, we are going back to nighttime-only continuous feeds. During the day, we are going to give the formula through the g-tube in thirty minutes (called a bolus feed) and then take Rebekah off the feeding pump for two and a half hours. This will be more like a bottle feeding and more like she is used to eating, without Rebekah having to expend the calories to drink from a bottle. We are also dropping the amount of calories that the formula contains so she doesn't get overloaded. If that goes well, we will add bottle feeding of breast milk back in gradually as she tolerates it. There is a possibility that Rebekah has developed a dairy protein allergy, but we really think she was just getting to much of a good thing with the high concentration of calories in the formula. The GI doctors visited the dairy allergy issue several months ago, but it turned out to be c. diff that time, so we were cleared. Personally, I don't think that is the issue this time, either. We'll wait and see how she does!

The doctors definitely want to keep Rebekah here in the hospital as long as she is still struggling with the diarrhea. They will be able to closely watch her to make sure she is not getting dehydrated. Once that clears up, we should be free to go as long as no other issues develop.

That's about all the news from here. Thank you for keeping Rebekah in our prayers and a special thanks to everyone who has helped out with the boys and with meals. You have no idea what a huge blessing that is to our family!

Nancy

The Plan of the Day

This morning started out eventful, if nothing else! Dr. Gwinn, the pulmonologist paid us a visit shortly before 9:00 this morning. After checking Rebekah out, she felt like we needed to have a consultation with cardiology. Her reasoning was that we have been treating Rebekah's lungs for basically a month now (counting her last hospital stay and our time at home), yet Rebekah still continues to need an ever-increasing amount of oxygen to keep her sats in an acceptable range.

While we understood that Rebekah's oxygen dependency could be cardiology related, we have heard for weeks now that the reason was respiratory related. So this morning, we hear from respiratory that it's cardiac. We hear from cardiology that it's respiratory. Can I scream now?????

Rebekah watching her brothers on their Sunday visit. We actually got to take Rebekah downstairs so her brothers could see her for about an hour.

So after a phone call from Dr. Darby (pediatrician) to Dr. Lucas (cardiology), it was determined that we are likely looking at a cardiac-related issue with Rebekah's breathing. Yes, she does still have a slight lingering respiratory illness, but nothing that would cause a need for a liter of oxygen. Her x-rays from Saturday looked good, and all of the blood work that was done also looked good.

The fish tank downstairs in a small waiting room. The boys love to watch the creatures inside, particularly the sea urchins like the one Justin is pointing to.

Dr. Lucas believes that the band on Rebekah's left pulmonary artery may be getting too small, not allowing enough blood to get to her left lung. This would result in needing more oxygen to compensate for the lower function of her left lung. On the flip side, we were hoping that one (or more) collateral artery would begin to take over the function of a right pulmonary artery to the right lung and make up for the reduced flow to the left lung. We were warned that it did not appear that a collateral artery had formed, and this scenario would back that theory up. Of course, all of this is just speculation until we get to Charleston in March for Rebekah's heart catheterization.

Rebekah hanging out with Daddy.

Rebekah and Aaron

Rebekah and Zachary

Justin and Rebekah

The other complication that has arisen is that Rebekah has begun to have diarrhea again as of yesterday. She has had two negative c. diff tests, so it is a bit of a puzzle as to what caused the diarrhea to begin again. Dr. Darby did have stool samples sent to the lab to check for a variety of other possibilities. We should find out about that tomorrow.

Rebekah was happy after seeing her Daddy and brothers.

After all of the consultation and talks back and forth, it will be interesting to see what tomorrow brings!

Nancy

More of the same

So, as you can tell, I haven't updated for a couple of days. As I was telling Drew tonight, I feel like all of my updates are the same thing....we have some good moments and not-so-good moments, but at the end of the day things are pretty much status quo.

Rebekah and I are enjoying watching the Olympics right now. Or, rather, I am enjoying watching the Olympics and pretending that Rebekah cares anything about it. :)

Rebekah is up to a liter of oxygen tonight. She has had periods of more difficulty in her breathing today than yesterday. For the most part, Rebekah does well with her breathing, but she has bouts of coughing that leave her struggling to catch her breath. Rebekah did have a chest x-ray done this morning and some blood work today, but we will have to wait until the doctor comes by tomorrow to see what the results are.

In an effort to conserve some calories and allow Rebekah to use her energy to recover, her doctor decided to put her on continuous g-tube feeding for the last couple of days. It turned out to be a good decision since Rebekah only drank about 4 ounces from a bottle today. When she did drink from a bottle, she had a lot of coughing and shortness of breath.

While we have been in the hospital, we had another good snow here in Greenville. That makes three hospital stays and three snows....I think I'm seeing a pattern here! We posted some pictures on our family blog of the boys playing in the snow this morning. You can view them here.

We're hoping to have a good night and an uneventful day tomorrow!

Nancy

Thursday P.M. Edition

What an up-and-down day! Rebekah was doing well this morning and early afternoon, but by this evening she started running a low-grade temperature and having more trouble keeping her sats in the low 80's.

Rebekah's cardiologist reviewed the results of the echo that was done this morning, and, as suspected, there are no cardiac issues in play right now. Everything that is going on appears to be solely respiratory. That is very good news! At least we are only dealing with one issue, not multiples!

We finally met Dr. Gwinn, the pulmonologist today. I say finally because there has been talk of having a consultation with her since our last hospital visit, and in fact, we had an appointment already scheduled with her on March 1. I had just filled out and returned the new patient information the day before we came into the hospital! Anyway, Dr. Gwinn read the x-rays taken last night and she saw patches of fluid in both the right and left lungs. The fluid could either be pneumonia, or excess build-up of fluid due to her heart and lungs working so hard to fight off this illness. Dr. Gwinn felt it warranted increasing Rebekah's dose of Lasix for tonight only to try to get some of that fluid off her lungs. If that does not seem to do the trick, we will do some more testing (blood work) to check for viral or bacterial infections. We did have some blood work done last night in the ER, but it clotted before any testing could be done on it. After four attempts to get an IV placed and two blood draws that clotted, the ER doctor decided to stop trying to get the blood and let the attending doctor order it if necessary. We will see tomorrow if Dr. Gwinn feels it is necessary.

I must say that I was very impressed with Dr. Gwinn. She is the only pediatric pulmonologist in Greenville, and she is very thorough. She had done her homework and came into the room with two pages of notes written about Rebekah and her different medical issues. She seemed to be very in tune with what was going on with Rebekah's particular respiratory issues, so I am hopeful that she will have some good suggestions for long-term management. Maybe with her help we will be able to stay out of the hospital for longer than three weeks at a time! :)

Rebekah is now sleeping soundly. Tonight she will be having her breathing treatments and continuous feeds as usual. Because of her low-grade temp (the highest so far was 99.9F), she will have her temperature checked every two hours through the night, or until they have two consecutive normal temperatures. Right now she is on about 3/4 liter of oxygen and her sats have been stable in the low- to mid-80's. We're heading for bed and hoping for a good, uneventful night!

Nancy

Whirlwind!

After waiting in the ER yesterday for almost eight hours, we were finally admitted to a room around midnight last night. The doctors have done labwork, RSV testing, chest x-rays and an echocardiogram. The bloodwork came back fine and the RSV was negative. The x-ray, however, showed some patchy areas on Rebekah's right lung. This could be due to some cardiac issues (her cardiologist feels that is unlikely), but most probably is indicative of viral pneumonia. We did have the echo done this morning just to rule out any cardiac possibilities, but have not seen the cardiologist to get the results of that test.

For now, Rebekah is resting comfortably on a liter of oxygen. Her sats are holding steady in the mid-80's, which is a huge improvement from the low-to mid-70's we were seeing in the ER last night. She is continuing to receive breathing treatments every 4 hours and oral steroids twice a day.

If this is, in fact, viral pneumonia, there is not much we can do except provide supportive care (oxygen, breathing treatments, steroids) and wait for Rebekah's body to fight it off. With her compromised immune system already overloaded with her last respiratory illness, it may take a while for her to recover from this. Not only is Rebekah more susceptible to catching respiratory illnesses, it takes her much longer to get over them than it would for a child with a normal immune system and no other heart or lung issues. We are patiently waiting this one out and trying to get all of the help for Rebekah that she needs.

Once again, thank you for all of your prayers, phone calls, emails, facebook and blog comments. It encourages us so much to be reminded of how special Rebekah is to so many people.

Nancy