At the end of the day....

....we're still at the hospital! We did finally see the doctor late this afternoon, and she elected to keep Rebekah one more night. If we were positive that the only thing going on was Rebekah's ear infection, we would have been home this afternoon. However, with the virus that the boys had last week, we are concerned that Rebekah has both an ear infection AND the virus her brothers had. So, the doctor wanted to "test" Rebekah tonight to see if her fever came back, and if it did, how Rebekah responded to it. The doctor set a threshold of 101* as a point to repeat Rebekah's chest x-ray and see if it was changed.

So...Rebekah was doing well until about 6:30 tonight. Coincidentally, that is almost the exact time she started getting worse at home last night. Rebekah's temp went up to 101.8* and a chest x-ray was done. We probably won't have the results of the x-ray till morning unless something drastic has changed from last night's. So far Rebekah's sats remain fairly stable and we haven't had to increase her oxygen tonight. Rebekah has since had Motrin and has gotten a second wind. I'm hoping she falls asleep soon because this mama is tired! By the time we got up to our room last night and finished talking to nurses, doctors and respiratory therapists, it was almost 3am! I am ready to call it a (long!) day and go to bed myself!!

Thank you all for your prayers for Rebekah!

Nancy

**Update: It's now after 10:00, and Rebekah is still going strong.........

April Fool's Day!

Well, I wish I could say "April Fool's, we're not really in the hospital," but unfortunately, that is not the case. :)

When we got Rebekah to the hospital last night her fever was 103*. It has come down overnight with the help of Motrin, and this morning was back to normal. We are watching to see if it starts climbing again towards evening as it did yesterday.

Rebekah does have an ear infection, and she received one dose of Rocephin through her IV last night. Rocephin is usually given in three doses, each 24 hours apart. We are waiting to talk to the doctor to find out if we are staying for 72 hours to get all three doses, or if he wants to switch Rebekah to an oral "cousin" of Rocephin, which is Omnicef.

Other than being tired, grumpy and having a pretty bad cough, Rebekah is pretty much her normal self today. Her O2 sats are back to normal this morning on her regular 1/2 liter of oxygen. Last night she was up to a full liter of O2 to keep her sats above 95%. So this is a huge improvement as well. Really, I think a lot of the problem last night was due to Rebekah's fever getting so high and staying high for several hours. It started doing wacky things to her system! Once we were able to get the fever under control, everything else seemed to resolve itself.

So right now Rebekah is taking a much-needed nap, and I am waiting to see our doctor. I'm actually surprised we haven't seen him already as he is usually in between 11 and 1. I was waiting to post so I could include information from the doctor, but I guess that will come in a later post! :)

Thank you for all of your prayers and comments. Considering where we could be, things are going pretty well right now!

Nancy

Hospital Bound

The last week or so the boys have had a virus cold or something like the flu with high fevers and congestion.

Well Miss Bekah has come down with it now. She has a mild ear infection also. So we were to the doctor's today and were going home on meds to recover. All was normal thru most of the day. This evening and into bed time Miss Bekah seemed to head down hill and then crashed at bed time. Her O2 sats have dropped below her allowed norms and she is having a hard time breathing. Along with this the also has pretty good fever.

So after call her cardiologists they are admitting her to the hospital to get her some help.

Please pray she will get over this quick. Also pray for Nancy as she is staying in the hospital with Bekah. Pray the boys to continue to get over their colds.

I want to say thank you to some dear friends who are helping out with the boys, so that I don't have to take anytime off from school. We appreciate all their help.

We will update you when we have more information on what is happening with Bekah.

D

Status Quo

So today has not really brought any big changes for Miss Rebekah. The one piece of good news is that so far today she has not had any fever! :) We are encouraged by that. Otherwise, though, her cough/congestion/cold are about the same as they have been. Rebekah did take an almost four hour nap today with only minimal interruptions, and I'm very thankful that she was able to get some sleep.

During Rebekah's nap, Dr. Darby came in. I asked him a few questions regarding Rebekah's care, and I feel like we are both on the same page. Our goal is to get Rebekah home as quickly as possible so we don't pick up something else while we are here. The only caution that I have is whether or not her high pressure is a condition that needs to keep her in the hospital while she has this cold. If not, Dr. Darby will send us home tomorrow or Wednesday at the latest with oxygen and a sat monitor so we can manage this (and any future) cold at home. If the cardiologist feels that the high pressure warrants more observation and/or staying until this cold is resolved, then we absolutely will stay. That is the million dollar question of the day! :) Dr. Darby was planning on consulting with Dr. Lucas (our regular cardiologist) today to get his opinion.

We were able to get a little more sleep last night. Once Rebekah finally went to sleep (after 10), she only woke up for a few brief times and then went right back to sleep. She did wake up around 5:30 this morning with a bad coughing spell, and she really coughed off and on after that until I got her up and dressed around 7:30. At least we were able to get several hours of sleep, though!

Tonight is Zachary's and Justin's school Christmas program and art show. Unless something changes in the next couple of hours, a good friend of ours is coming to sit with Rebekah so I can meet Drew and the boys at school. We haven't said anything to the boys, so I'm sure they will be excited to see me. I think the current plan is for Drew and I to trade off tomorrow so I can go home and get some laundry and other chores done and spend some time with the little guys. Then hopefully we will bring them up to Rebekah's room for a bit so they can see her as well.

Not much else has been going on around here, and Rebekah just woke up. I'm off to spend some time playing with her. I will update if anything new comes up!

Nancy

Brrrrrr!

Well, we haven't seen any snow yet (unless you count the dozen or so minuscule flurries I saw around lunch time), so this trip may prove to be our record breaker. However, it is downright cold for this southern blood! Temps in the teens with even colder wind chill is not my idea of a mild southern winter! :)

Rebekah is stable tonight. She is not really any better, nor is she any worse. Her fever has come and gone off and on today; I think slightly over 100 was the highest recorded temp today. The lower temps are probably due to someone's newfound interest in the little ice chips available here at the hospital (same kind you can get at Sonic). I can't imagine where in the world she would have picked up such a silly little habit. ahem.

Two pigtails are cute...four are even cuter!

Earlier this week, I had fun playing with Rebekah's hair. She is such a good sport and lets me do almost anything. She really likes having her hair brushed and played with. I really enjoy brushing and playing with it! We make a pretty good combination, I think! :)

Rebekah playing on the stairs.

One day last week Rebekah decided to sit on the bottom step. She probably played for over an hour there. At times she sat; at other times, she pushed herself up to standing and stood without holding on to anything. She was so proud of being able to stand up by herself, and she let us know by clapping!

See my brothers? This one is Caleb.

Rebekah has had some periods of playing today. She has also had periods of time when she has just felt rotten. During some of her more playful times, Rebekah likes to stand at the end of her crib and jabber about her brothers. She has been saying "Bubba" for Caleb's name. I'm not sure if that's her way of saying Caleb, or brother, but either way, it's very cute! :)

Kisses for my brothers!

We saw one of the cardiologists from Rebekah's group this afternoon. He was concerned about this sickness adding more stress to the already high pressures Rebekah has. To that end, he recommended that Rebekah go back on oxygen for a while to give her lungs a little break from working so hard. He also said that he would prefer to see Rebekah remain in the hospital until she makes a definite turn for the better. Of course, we are hoping that is sooner rather than later!

Brrr....this ice is cold! (But it's SOOO good!)

This is a short little video of Rebekah walking with her little doggy. Excuse the shakiness. Zachary was our amateur videographer. :)

We're praying for an uneventful night, as much sleep as one can possibly get in a hospital, and a great day tomorrow!

Nancy

Saturday Night Update

We are settled in at Greenville Memorial, and in true Rebekah-style, it is 10:00 and she is still going strong. :) We have had an eventful two days, so I'll try to fill you in.

Yesterday (Friday), Rebekah woke up with a cough. It wasn't a bad cough, and we decided to just watch it and see what happened. We put Rebekah to bed a little later than usual, and by the time Drew and I went to bed, she was coughing a lot. That translated to us being up and down almost all night. By the time morning rolled around, I was up and on the phone with the doctor's office as soon as they opened. They wanted to see Rebekah right away, so we took off and were there by a little after 9:00. By the time we got to the doctor's office, Rebekah was coughing so much that she could barely take a breath in between coughs. We had only been back in the room for a few minutes when the doctor (one we have seen in the past, but not our usual pediatrician) came in with a breathing treatment. He ordered two Xopenex treatments given about 10 minutes apart. When we finished, he came back in to listen to Rebekah and said that she was still working to hard to breath and that we needed to head to the hospital. Dr. Belvin did not actually do any bloodwork or testing at the doctor's office, but he said that Rebekah had all the symptoms of RSV.

When we got to the hospital, it took a few hours to be admitted, get settled into our room, and get all of the normal "admission" paperwork and other stuff out of the way. By mid-afternoon, the nurse was ready to draw blood for the labs the doctor ordered. In a few hours, the RSV test came back: negative. We are very thankful that Rebekah does not have RSV!! It is a particularly nasty little cold bug that can seriously restrict airflow through the lungs and cause problems for babies with immature lungs, or in Rebekah's case, for those with only one working lung. With that being said, though, we really don't have a name for what Rebekah has. It appears that this is playing out just like last winter. We are in the hospital for an unspecific respiratory virus that is causing Rebekah to have lower oxygen sats, a very congested nose and a really, really yucky cough. She also has been running a fever between 100-101.2. So far Rebekah has avoided being on oxygen, but she was very close around 9:00 when she had a bad coughing spell and her sats dipped to around 80. She has been able to bring her O2 up on her own each time it dips, so we are just waiting to see if her body can fight this bug off without the extra oxygen. It is ready to go, though, if she does happen to need it in the night.

So, that's where we are at and how we got here. I am really hoping that after a day or two of observation we can go home and monitor this cold from home. The only drawback is that we no longer have oxygen or a sat monitor at home, so we aren't able to check Rebekah's sats from home.

Please pray for two other little heart babies that live near us. Mason was flown to MUSC in the early morning hours on Friday and had an emergency open heart surgery late Friday afternoon/evening. The surgery did not go as planned, and he will need another one in a few months, but he seems to be stable right now. You can read more about his story by clicking here. Brandt is also at MUSC this week, and he had his second open heart surgery Tuesday. After some ups and downs with his blood pressure (and his self-extubation!!), he was doing well enough to be moved to step-down today. Yeah, Brandt!! You can read all about Super Brandt by clicking here.

I guess that's about all for now. I am anticipating seeing some snow in Greenville tomorrow or Monday. After all, it snowed at some point during every hospitalization (in Greenville) that Rebekah had last year. It's an amazing record that I would hate to break now! :)

In all seriousness, please pray that whatever this virus is will go away quickly. Pray that Rebekah can breathe well enough to sleep tonight and that her airways will open up more. Also, please pray that Rebekah's oxygen levels remain high so that we don't need to use oxygen.

Nancy

The Beginning of a long winter.....of colds

Rebekah has been admitted to the hospital here at home. She had a rough night of coughing and little sleep. She has RSV which is causing her to have trouble breathing. Basically a common cold for our boys, but a serious problem for her with all her other difficulties. So we are greeting the winter season much as we did last year with a trip to the hospital. We hope she will get over this quickly and be back home soon. We also are praying that this will be her only trip this winter.

We will keep everyone updated as she fights of yet another cold.

Thank you for your prayers and support,

D

10:00 and still going

So much for earlier plans of getting Rebekah to sleep. It's now after 10pm and she is going strong. She isn't being bad, or even fussing. She's just awake. And bored. And ready to be out of this bed and out of this room! :)

When our nurse checked Rebekah's temperature around 9:00 tonight, it was 99.8. Grrrr..... That is still considered low-grade, but if we string a couple of temps like that back to back, I have a feeling we're going to be starting our 24 hour countdown all over again. I'm really, really hoping to be able to get home soon!

I'm getting ready to go to bed myself, so hopefully Rebekah will get the hint and also go to sleep. Here's hoping! :)

Nancy

Maybe, Possibly.....

We might just be hearing whispers and rumors of home!! Rebekah has not had any fever at all today, so we are cautiously excited that she will continue that trend through the night and tomorrow. Overall, Rebekah is doing really well. She is more active, playing and in general ready to be out of the hospital! I, for one, will be elated to get out of the hospital and into a regular sleeping schedule! Hospitals are great when you need them, but they are an awful place to be when you aren't sick! :)

Rebekah was able to go to the Atrium today (the playroom). We had fun making a tie-died shirt with some volunteers that came today. Also, we played with some Little People and a wooden doll house. Rebekah had great fun dropping the toy doctor down the stairs. (Note: I don't think she had any clue that it was supposed to be a doctor, but I found it to be quite humorous!) After all of the excitement and playing, Rebekah has come back to the room and crashed. Maybe she will sleep well tonight!

This afternoon we went down to the radiology floor to have an ultrasound of the lump on the back of Rebekah's neck. Basically, the ultrasound tech and the radiologist have no idea what it is! The radiologist said that if Rebekah was two or three months old, she would have diagnosed it as a hemangioma, but Rebekah is beyond the typical age when hemagniomas develop. The ultrasound did define that it is not a tumor, or hard mass, as would be typical with a cancer. So, the plan is for us to keep an eye on it and when we come back in 3-4 months for Rebekah's heart catheterization, they will do another ultrasound if it has not gone away before then. Of course, if it begins to grow, becomes red, inflamed or any other changes, we will have it imaged again sooner.

Miss Boo is awake and ready for her dinner. I'm hoping to get her in bed fairly early so she can have a good night of sleep. We'll see how that goes! :)

Nancy

Playtime!

I'm talented! I can play the piano with my feet, play with blocks and wave all at the same time!

Catheterization Update

Finally! I am now at a place that I can get my computer out and give an update! Sorry for the short and misspelled posts the last couple of times, but we have only been able to update from our cell phones until now. Let me recap our morning!

Rebekah had to be checked in at the hospital at 7:15 this morning. We were up and at the hospital in plenty of time. Rebekah could not have anything by mouth after 3:00 am, but she was happy when we checked in and didn't seem to be hungry. After checking in, we went up to the same-day surgery room to wait for our turn.

We knew before today that Rebekah would be second case in the cath lab. What we did not anticipate was having to wait for so long! The first case did not get taken into the lab until 8:00, and by this time, Rebekah was starting to get hungry. Our nurse gave us permission to feed Rebekah some Pedialyte, so we gave that to her between 8:30 and 9:00. I am so thankful we were able to let her have that! As it turned out, the case before us had some problems and the doctors took much longer than they had anticipated before they finished that case. Rebekah was not taken back to the cath lab until almost 2:30 this afternoon.

The first item on the agenda was the bronchoscopy. This is the procedure that Rebekah's pulmonologist wanted to have done to check Rebekah's trachea and bronchial airways for tracheomalacia (underdeveloped cartilage in the trachea and/or airways). The thought was that if Rebekah had tracheomalacia, it would explain some of her wheezing and respiratory problems and why she does not respond to the inhaled medications like the doctors think she should. The bronchoscopy was done rather quickly and the ENT came back to talk to us around 3:00. He could find no areas of tracheomalacia and said that from an anatomical perspective, everything looks fine. His recommendation is to have a swallow study done tomorrow to check for possible aspiration. If you remember, Rebekah had three swallow studies done during her first month at MUSC, so this is nothing new to us. The ENT did say that it would be unusual for her to begin aspirating again after having done well for several months, but he has seen it before. If there is a way to be unusual, Bekah probably will find it! :) We aren't sure yet what time tomorrow that will be, but it is going to be put on the schedule.

The second item on Rebekah's cath lab schedule was a sedated echocardiogram. She has echos done once a month or so at the cardiologist's office, but the chances of her laying perfectly still through the whole procedure are non-existant. So while she was already going to be sedated, the doctors wanted to get some really good pictures from the echo. We received a page just a few minutes after 4:00 that the echo was done and they were beginning the catheterization.

So, that brings us up to date on Rebekah's progress. It will likely be close to 6:00 before she is done with the catheterization and she most likely will be moved to the PCICU for recovery. She will definitely be staying overnight and will have a swallow study done some time tomorrow. We will post again when we have more information!

Thank you for all of your prayers, comments, Facebook posts and texts. We love you all!

Nancy

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

65 Roses

Cystic Fibrosis, also called "65 Roses" by young children who have the disease. Try saying 65 Roses quickly - it sounds surprisingly like cystic fibrosis. It's chronic. It's ugly. It's incurable. And, thankfully, Rebekah's test came back negative. Yes, for the last four days, we have known that Rebekah could potentially have cystic fibrosis and that she would be tested for it this morning.

Rebekah has had chronic respiratory problems and chronic GI issues for months. Both are significant markers for cystic fibrosis (CF). Last week, we learned that Rebekah is outputting large amounts of fats in her stools. Also another indicator for CF. I'm sure you can imagine that we were very concerned about the test this morning. Because of Rebekah's compromised lungs and immune system, a chronic disease like CF would shorten her life span considerably.

We were shaken. I was terrified. How in the world would we deal with something like this on top of all of Rebekah's other health problems? But, in the end, Drew reminded us both that God has His hand on Rebekah. He made Rebekah just the way He wanted her to be. Whether or not she had CF, or some other kind of illness is no surprise to God. Our job is to love and care for our little girl for as long as God entrusts her to us. And when her job is done here, she will be in a much better place than we can even dream of.

Not that we wanted the test to be positive. But, we had a choice. We could choose to be upset and bitter that Rebekah could potentially have her life shortened and deal with this debilitating disease. Or, we could continue to trust God and His plan for our family. I think I can honestly say we came to the point that we were ready to accept the test results no matter what. Of course, we are joyfully praising God that He did not choose this road for us. But, if He had, we would be praising Him still, for trusting us with such a task.

We still do not know what is causing Rebekah to output such large amounts of diarrhea, nor why she has such a high fat content in her stool. There is one other test that should come back early next week that will show if she is lacking pancreatic enzymes. There are several different reasons for that as well, one of which is Crohn's disease. That is also a very unpleasant, lifelong disease. Based on the results of the enzyme test, we may have further testing done next week. The likelihood of all of this being related to a dairy protein allergy is getting slimmer the farther we go along. Rebekah has not had any breastmilk since last Wednesday, and we should begin to see some improvement by now. For sure we should see some improvement by the middle to the end of the week if it is dairy related.

This afternoon Rebekah has started to run a low-grade fever and has started retching. It could be something as simple as a little stomach bug; it could be caused by drainage that is irritating her stomach; it could be related to the diarrhea, but not likely since the diarrhea has been ongoing for so long. The doctors are keeping a close eye on Rebekah this afternoon to monitor her symptoms.

Even with all of this going on, home is a possibility. Obviously, if she continues to run a fever or have unexplained retching, that will put a hold on things, but if we are just waiting for test results, we will most certainly be allowed to wait at home. So my prayer is not that we will be at home, but that we will be in the right place. If Rebekah is fine, I would love to go home. However, if there is still something going on that needs to be monitored by the medical staff, I am content to wait here in the hospital with her until we have answers.

Thank you for all of your prayers, and please continue to pray that we find some answers to Rebekah's tummy problems.

Nancy

Playing!

Sometimes it gets boring just laying in a hospital bed, so a girl's got to come up with something to do! Rebekah loves, loves, loves to play with her feet! Unless she is sleeping, you are guaranteed to find Rebekah playing with her toes, or chewing on them. :)

Rebekah playing with her toes and talking to me!

We have been making good use of our time, and working on some of our therapy goals. Mrs. Beth, we have been banging two objects together, no problem! We also bang them on the crib rails, on our toes, on our head and get them in our mouth! Just wanted to let you know in case you thought Bekah wasn't an overachiever!

Yep, I have the two-toy thing down cold!

Rebekah's hair is growing at an unbelievable rate! In doing some research this week (unrelated to hair growth, by the way) I found that kids with DiGeorge often have copious amounts of hair. I think Rebekah fits that picture!! We will have great fun with bows, pigtails and braids in our future. :)

Rebekah usually has a smile for the camera.

And, now, for the big surprise.....Rebekah is starting to sit on her own for a few brief seconds!!!!!! She has been doing very well sitting with me just giving a small amount of support, so I let her go to see what she would do. She actually sat for quite a few seconds, but by the time I grabbed the camera she flailed her arms out in a final balance before toppling. I'm so proud of our little fighter!

See, I can do it!!!!!

As far as all things medical, Rebekah is really about the same. She is having a bit more upper respiratory congestion (stuffy nose and sneezing) and more coughing today. Her lungs continue to sound excellent, though, so that is really good news.

I wish I could report that the diarrhea was getting better, but I can't. The GI doctors have run a host of tests, and unfortunately, most of them take days, not hours, for results. At the moment, Rebekah is not getting any breastmilk just in case the cause of her problems is a dairy protein allergy. I am still pumping and freezing the milk for use later. There is one more test that the doctors want to check and that one will be done on Monday. I don't know how long it will take to get the results back. All of these tests are checking for the amount of nutrients that Rebekah is absorbing. That will tell the doctors a lot about what is going on and how to treat it. Please pray for accurate results from all of this testing so that we know where to go from here.

Sitting up with the help of my toys!

That's the extent of the news from here. We're enjoying the beautiful sunshine after so many snowy/rainy/cloudy weekends in the last month or so.

Nancy

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

Hospital Again...

Rebekah and I are heading to the ER this afternoon. Her sats have not improved from yesterday, and she is laboring to breathe more. We are going to have some tests run, possibly another chest x-ray and a decision about where to go from here. I'm guessing we will at least be kept overnight while we try to get this respiratory illness under control.

Thanks for praying.

Nancy