Closer to answers?

First off, I have to say thank you all for your prayers for Rebekah's appointment this morning.  She did fantastic!  I was a bit concerned because I wasn't sure how long the appointment would take this morning, but Rebekah was as good as she possibly could have been!

To start with, Dr. L scheduled Rebekah for an echocardiogram.  We are so grateful that everything with Rebekah's heart looks great.  Her pulmonary hypertension remains stable (about where it was after surgery), her heart function looks good, and she is not retaining any fluid. 

Based on my description of Rebekah's symptoms, Dr. L thinks she is having bronchial spasms caused by micro-aspiration secondary to her vocal cord paralysis.  Do you want the English version now?  Dr. L thinks that despite thickening Rebekah's liquids, that she is aspirating very, very small amounts of liquid which is irritating her airways.  The irritation is causing the coughing and choking and breathing abnormalities. Since Dr. L didn't see anything cardiac related, he referred us upstairs to pulmonology.

Unfortunately, Rebekah's pulmonologist was not in the office today, but one of the other partners was able to work Rebekah in immediately.  He completely agreed with Dr. L's theory, so he made a couple of recommendations.  First, he wants us to restrict as much liquid as possible from Rebekah's diet.  That's not going to be fun at all!  Second, he wants Rebekah to have another swallow study done here in Greenville.  Two weeks ago when we discussed another swallow study with Rebekah's pediatrician, she wasn't choking nearly as much as she is now.  It seems like we are going rapidly in the wrong direction.  So he wants to get another look at Rebekah's swallowing and see what (if anything) has changed in the last few weeks.  The nurse was hopeful that we could get it scheduled for next week.  Finally, we left the office with prescriptions and samples for two inhaled medications.  This is our first experience with inhalers.  In the past when Rebekah has needed inhaled medications we have always used the nebulizer.  The inhalers are much faster than nebulizer treatments, so I'm hoping that Rebekah gets used to them pretty quickly.  She has what is called a spacer that holds the medication until she breathes it in.  It's a pretty ingenious little device.  I'll hopefully get a picture of it and how it works with Rebekah in a couple of days after she has had a little time to adjust to it.  She wasn't exactly thrilled with it tonight.  :)

Hopefully Rebekah will only need to use the inhalers for a few weeks until we can get the irritation in her airways calmed down.  She is taking Flovent in the morning and evening, and Xopenex as needed for uncontrollable coughing.  We gave Rebekah the first dose of Flovent after dinner, and she has so far been sleeping fairly well.  She has only woken up coughing twice, which is a definite improvement from last night.  We'll see how the rest of the evening progresses.

I just had to show you this hilarious picture.  Rebekah held her foot out to Aaron and said "thiss," which means "kiss."  So Aaron very sweetly knelt down and kissed her foot.  It was very cute!  And, you can't see it in the picture, but Rebekah is rubbing Aaron's hair on the other side of his head.  :)

I just cannot describe to all of you how much the boys love their sister.  She is absolutely the light of our family, for sure!  We are so blessed to have been given such a special little girl.  Thank you all for praying for her, and please continue to pray that we find some definite reasons for the cough and choking Rebekah has.

Nancy

Sunday

Today really was a day of rest!  Other than a chest x-ray this morning, Rebekah's day was very low-key.  Dr. Bradley came by this morning, and said that last night's x-ray showed some improvement, so at least we are on the right track!  Rebekah will have another x-ray sometime tomorrow, and we are hoping that it will be much improved.  Rebekah was up a lot today.  In fact, she was really in her bed only for naps today.  She wasn't walking around as much today, but she was sitting up in a chair, or on our laps, or on the floor playing and coloring a good bit of today.

Pain control continues to be an issue for Rebekah.  She is fine and wants to get up and play as long as she has good pain coverage.  But, when the pain meds start to wear off, she has cries and whimpers, even in her sleep.  We are trying very hard to keep her pain under control without medicating her so much that she sleeps all day.

We really struggled with Rebekah wanting something to drink today.  She just doesn't understand why she can't have a sip of water, or juice, or milk.  It is so hard to try to distract her or get her to accept another choice.  I had Rebekah's nurse call the speech pathologist this afternoon to check with her to see if Rebekah could have a milkshake.  My reasoning is that it is as thick as the yogurt/pudding/applesauce/ice cream consistency that has been approved for Rebekah to eat.  Thankfully the speech path. agreed and we were able to get a milkshake for Rebekah to drink.  I think it just made her feel better to have something wet in her mouth.  Rebekah actually ate very well today.  She had an entire serving of mandarin oranges for lunch along with a few green peas and the milkshake.  For dinner she ate a large (for her) portion of my salad.

After the discouraging news yesterday about Rebekah's vocal cords, we had some really, really good news today.  Rebekah has been OFF her oxygen for about five hours today, and has kept her sats above 90%!!!  We hadn't really let ourselves hope that Rebekah would go home without oxygen, but it looks like that might be a very real possibility!  Before surgery, Rebekah had absolutely perfect sats (between 98-100%) without oxygen.  After surgery, she has been from about 85-100%.  Some of the lower sats could be attributed to the fluid still remaining on her lungs.  However, Dr. Bradley thinks that possibly the re-routing of the blood flow through her lungs may have lowered her sats just a bit.  He is fine with her sats being above 90%, and she has kept them up so far today since the oxygen was turned off.  We'll continue to monitor the sats in the hospital, and then occasionally for a few weeks after we get home to make sure things are still where they need to be.

So tomorrow morning, sometime around 9:00, Rebekah will have her swallow study.  They will be giving her different consistencies of food and beverages to see if she aspirates any of them into her lungs.  The food should not be a problem, but there is some concern that she is aspirating thin liquids.  We would certainly appreciate your prayers for the swallow study tomorrow!

Nancy

Saturday!

I am happy to say that Rebekah seems to be feeling better today!  :)  Or at the very least she is tired of laying in her bed and wants to be up and doing things.  She was wide awake shortly before 7:00 this morning, and we started the day with a bath and beauty treatment.  :)  Bekah wasn't crazy about taking some of the stickies off in the bath, but she seemed to relax and enjoyed having her hair washed. 

Some of you may remember from one of my posts a few days ago that Rebekah's voice has been very soft and whispery since surgery.  The first couple of days, we just assumed that it was a hoarse throat from having the breathing tube in.  After several days passed, though, we became concerned that something more might be wrong.  We talked to Dr. Bradley about it Thursday night, and he referred Rebekah for an ENT consult.  The consult didn't happen until late last evening.  We really liked the ENT that we met with last night, and he listened to our concerns about Rebekah and then decided to do a scope of Rebekah's airways to see if there was anything going on.

As it turns out, Rebekah's left vocal cord was paralyzed at some point during surgery.  It possibly has been stretched, or it could have been severed.  The nerves around the voice box go down into the chest on one side and go back up on the other side.  Time will tell whether or not the paralysis is permanent, but Dr. Bradley told us that is one of the areas that he was working in.  As careful as he is, one of the risks of open heart/open chest surgery is damage to the vocal cords.  For now we watch and wait to see what happen.  Her voice could come back in a matter of a few weeks to a few months.  If not, then the damage is permanent and we will discuss options for restoring her voice at that point.

One of the struggles we are already having with Rebekah's vocal cord loss is communication.  She can and does speak, but it is very, very soft and some sounds are just lost.  It has been a source of some frustration here in the hospital in a relatively quite room.  I think our whole family is going to have to work extra hard to make a point to listen to Rebekah.

Another complication of Rebekah's vocal cord is her swallow.  Because the nerves control the vocal cords and swallowing, there is a serious risk of aspiration.  Rebekah has been given the "okay" to have purees and solids, but nothing thinner until she has a swallow study on Monday.  So, no liquids at all for the weekend for sure.  On Monday we will find out if Rebekah can have normal liquids, or if she can have thickened liquids, or if she will not be able to have liquids at all.  It has been a rough day already since Rebekah wants to have a drink with her meals or during the day.  To make up for the lack of fluids, we are giving Rebekah three bolus feeds of Pedialyte during the day.  We will find out on Monday if we need to continue that at home, or if Rebekah will be cleared for liquids.

Rebekah has still been in a fair amount of pain today, despite the fact that we have continued her pain medications.  She is also scratching her incision relentlessly.  She has been getting Benadryl as often as she can have it, but she still managed to scratch off the top half of her steri-strips covering her incision.  Bek's nurse had to come in and re-bandage Rebekah's incision.  We can't keep up with what that girl will think of next!

Look at who is up and walking!!  :)  Rebekah has wanted to "go bye-bye" off and on today.  So, a couple of times today we took walks up and down the hall.  Understandably Rebekah is still a little unsteady on her feet, but we are thrilled that she is doing this well!

Rebekah has another chest x-ray ordered for tomorrow morning.  The x-ray she had early this afternoon still looked "wet," so there is some fluid that she still needs to get off her lungs.  Sitting up, moving around, walking, all of these things will help Rebekah get the extra fluid off.  Also, she is still on an increased dose of Lasix three times a day.

So today has been a little rougher as we've had to deal with some of these little complications, but overall Rebekah is still doing so well.  We are so thankful that God has given Rebekah to our family!  I haven't heard any updates on baby Jackson today, but please continue to pray for Jackson and his family.

Nancy

Friday Update

The good news is that I finally got some pictures uploaded and posted.  The bad news is that Blogger put them in this post in random order, and I haven't been able to figure out how to rearrange them.  I know it's supposed to be all click-and-drag friendly, but right now Blogger isn't playing nice.  So enjoy the pictures and I'll try to give some explanations so they all make sense.  :)

Rebekah had a very special gift delivered to her on Tuesday from the Butcher family!  If you don't know them, Annabelle was a very special little girl who spent much of her time in the PCICU at MUSC.  She lived for only a few short months with a very broken heart.  As a way of remembering their sweet Annabelle, her parents began a program called Annabelle Baskets.  The baskets are given to babies who require open heart surgery to repair their heart defects.  Rebekah has been the recipient of two Annabelle Baskets, and this time she received a specially chosen package from Annabelle's family.  Rebecca, thank you so much for the thoughtful gifts you put together for Rebekah.  I know she doesn't look too happy in the picture, but you really found a lot of her favorites!  (The Hello Kitty pencils brought the first smile we'd seen since surgery!)  And the little bear sings "Jesus Loves Me."  It's Rebekah's favorite song!!  :)  So thank you again, Rebecca.  What a special surprise!

Let's see....I think this picture was Thursday night.  It was the first night Rebekah wanted me to hold her.  She still seems to be in a good deal of pain, and I feel like we spend our time chasing her pain instead of staying ahead of it.  We requested doses of Oxycodone, Tylenol and Benadryl (Rebekah has really been itchy around her incision.) before bed tonight, and Rebekah finally seems to be sleeping peacefully.  I asked her nurse to please give the pain meds when they are scheduled through the night instead of as-needed, so hopefully Rebekah will sleep all night!

This afternoon Rebekah felt well enough to go to the playroom.  Here it is called the Atrium.  She had a good time playing with some toys, then she asked to color.  We stayed for about an hour, and she did really well.  She was sitting on her own and playing with some toys, and she even stood and took a couple of steps with Drew's help.

I think this picture was Thursday morning. I love the legwarmers, and so does Rebekah!  She looks so cute in pink and gray!  :)  All of the lines you see in the picture are now out.  Rebekah was moved to the floor this morning, and she still had an IV in her left foot.  (The one in her right foot wouldn't flush last night, so they removed it.)  All day Rebekah has cried any time a nurse has used the IV in her foot.  This evening she got her nausea meds through that IV and just cried and cried and cried.  I asked the nurse if we could just take it out, since Rebekah was getting all of her other meds through her g-tube.  She called the on-call doctor, and he gave the green light.  It was a good think we took it out because it had infiltrated and left the top of her foot swollen!  No wonder the poor girl was in so much pain when anyone messed with it!  The swelling should ease overnight, and by morning she should be able to walk without any pain.

Bekah loves to play with Daddy's hats!  :)  Even though she isn't smiling a lot, we have had periods of play time today.  Rebekah and I play this silly game where we blink at each other and try to copy the blinks.  I know, it's a silly little game, but it entertains her.  :)  Anyway, she started it tonight on her own right before she fell asleep.  I love that she's starting to feel well enough to play a little!

This afternoon after Rebekah played in the atrium, she was taken downstairs for an echo and a chest x-ray.  We're assuming they both were fine since "no news is good news" when it comes to tests and labwork.  Rebekah was such a good girl for her echo, in spite of the fact that she was really tired after playing in the atrium and would rather have gone back to her room for a nap!

We borrowed a small stroller from the unit to take Rebekah to the atrium.  She isn't up to walking yet, and holding her for long periods of time is still uncomfortable for her.  The stroller was the perfect thing!  She enjoyed getting out for a little while.

Mommy and Bekah in the PCICU on Thursday night.  We stayed a little later than we normally do since we had to leave earlier in the evening when Jackson came back from the OR.  I saw Jackson's grandparents in the atrium this afternoon, and they said he is not doing well.  Please, please continue to pray for little Jackson and his family.

Rebekah loved playing with the Weeble Wobbles in the playroom.  She spent a good deal of time putting them on the little ferris wheel, sliding them down the slide, and just having fun.  She reluctantly shared some of them with another little heart friend who was also playing in the atrium.  :)

Mmmmm....strawberry ice cream!  So far it's the only thing Rebekah has eaten since surgery.  I can't say that I blame her! :)   She has also enjoyed some apple juice, but that's about all she has had orally.  We're not pushing her since she is getting her overnight feeds.

Rebekah is settled for the night, and I'm about to get some sleep while I can.  Thank you all for praying for our heart babies.  They are special little people!!

Nancy

Wednesday Night

Well, better late than never!  :)  Rebekah had a fairly good afternoon once we got some medications switched around and a little more pain medicine on board.  She was finally able to get some sleep, which would make anyone happier!  :)

I'll see if I can recap everything that happened today, partly because all of you are interested, and partly because I want to remember what the doctors said today.  Yes, I freely admit that if I don't write something down, I won't remember it!!

Before we saw Rebekah this morning, she had an echo in the PCICU.  This is perfectly routine, and all PC kids have an echo and a chest x-ray pretty much daily.  On Rebekah's echo this morning, there were three things that the doctors noted.  One, the function in Rebekah's right ventricle was diminished from yesterday's echo.  Two, there appeared to be a small area at the edge of the new conduit (the one that connects her collateral artery to her pulmonary conduit) that could have been the beginnings of a blood clot.  That is serious because this new conduit is only 6mm in diameter.  It would take only a very small clot to block that conduit completely, and that would be very, very bad; potentially fatal, even.  Third, Rebekah's pulmonary pressures appeared to be higher than what they were when she came out of surgery.  Also, during Rebekah's chest x-ray this morning, as I mentioned in my earlier post, she had several areas of atelectasis (collapse) throughout her lungs.

Also today Rebekah's potassium was on the low side, so she did have to receive a bolus (one single dose) of replacement potassium.  As of this evening's lab, her potassium was at a low-normal level.

So, as I said in my earlier post, Rebekah began CPT (chest physical therapy) today to try to open up the collapsed areas of her lungs.  She is having CPT every six hours around the clock until her lungs clear.  Tonight's x-ray did show some improvement, although the right lung is still quite hazy.  It's hard to get a really good look at her left lung because her heart is so large!  :)  Another thing that is helping with Rebekah's lungs is that she had negative fluid output today, which is great!!  That means that she expelled more fluid today than she took in.  Normally that's not a great thing, but it is terrific right after surgery! She needs to get rid of the extra fluid that has accumulated over the last couple of days.  The negative output is a direct result of the two diuretics (Lasix and Diurel) that Rebekah has been getting regularly for the last 24+ hours.

If you have followed Rebekah's blog since her last surgery, you may remember that Rebekah has taken Sildenafil (more commonly known as Viagra) for about a year.  It was discontinued right after surgery, but with the higher pressures in this morning's echo, the doctors decided to resume Rebekah's Sildenafil.  They also increased the dosage to 4mL's three times a day, which is a significant increase from her previous dose.  It would seem that the Sildenafil is already beginning to work since this evening's echo showed the pressures down to the level that they were when Rebekah first came out of surgery.

As for the small area that might potentially be the beginnings of a clot.....Rebekah is now a member of the Aspirin club!  Many, many heart kiddos take aspirin, and I have truly been surprised that Rebekah has avoided it this long.  However, she will be on a small dose of aspirin from now on, probably for life.  It is vital that her conduit not clot off, as it truly would be a life-threatening condition.  The only change that the aspirin means is that we will have to be a little more careful about any cuts, scrapes or bumps that Rebekah might get as she will certainly bleed more easily.

The thought for the decrease in right ventricle function is that the heart is simply bruised and hurt from Monday's surgery.  It will take a little time for it to heal and be completely back to Rebekah's "normal" function.  As of this evening's function, the right ventricle was already showing some improvement from this morning.

Rebekah continued to gag and retch for a good bit of today, even with little to nothing in her stomach.  I asked (begged, pleaded, pretty much demanded) for the doctors to switch her nausea medication from Zofran to Phenergan.  The Zofran is a more mild medication, and it just was not helping Rebekah at all!  After Rebekah received her first dose of Phenergan (around 2:00), she really seemed to relax and rest more easily. She still had periods of retching and gagging, but far fewer incidents than before. We were so thankful that the Phenergan worked to bring her some relief!

Dr. Bradley came by to check on Rebekah around 5:30 this evening, and he is still very pleased with her progress.  In fact, Rebekah is doing so well, that he decided to remove her pacing wires and chest tubes.  The pacing wires are actually leads he puts into her heart during surgery and leaves the ends exposed on the outside of her body in order to hook them up to an external pacemaker if necessary.  Thankfully, Rebekah's heart rhythm has remained normal and she has never needed to be "paced."  The chest tubes drain fluid that accumulates in the chest cavity following surgery, and Rebekah had a surprisingly small amount of fluid over the last 48 hours.  In fact, she had less than 20mls of fluid output from her chest tubes all day!  The lack of fluid is definitely a huge answer to prayer, as this was one of the more troublesome complications that we were warned could be a problem this time around.  Thank you all for praying!!!

Before Dr. Bradley took the chest tubes out, Rebekah got some IV morphine and some Versed so that she would be more relaxed and not feel too much pain from getting the tubes out.  She was great!! She cried just a tiny bit, but for the most part she lay very still and let Dr. Bradley do his job.  Rebekah has been scratching at her incision often today, so she got some Benadryl a few minutes after Dr. Bradley was done.  We were joking that she had quite the cocktail of drugs tonight!  Hopefully it means that she will sleep well!

And speaking of sleep, I think I finally have everything documented from our day.  Now it's time for me to sleep!  :)  Sorry this was a very technical post, but I didn't want to forget anything.  I never know when some obscure detail will be important later on!  I will make sure I get some more pictures up tomorrow.

Thank you all again for so faithfully praying for Rebekah.  We are forever in your debt!

Nancy

Home Again!

Thank you all so much for the prayers for Rebekah and our family during her heart catheterization. We left MUSC around 11:00 this morning and made it about halfway home before stopping for lunch. We made it home around 3:30. Rebekah slept from MUSC until we stopped for lunch, and she slept for about an hour after lunch. I think it was really good for her to be able to relax and get some much-needed sleep.

One thing that I realized I forgot to mention in last night's post is that the doctors recommended that Rebekah stay on her oxygen indefinitely. They firmly believe that the oxygen is doing some good, so tanks and tubes will remain in Rebekah's future.

As of bedtime tonight, Rebekah had not had another fever. We are hoping not to see any more!

Tomorrow Rebekah will be going to see her cardiologist for a check-up. As far as I know, she will also have an echo. Dr. Lucas likes to put his eyes on his heart patients when they come back from MUSC so he is familiar with how they look after a procedure. That way, if there are any problems that come up, he knows exactly how things looked when we got home.

Rebekah is on an every eight-hour schedule with her Sildanefil. We are going to try to make it 11p, 7a, and 3p. Any other schedule has me getting up in the middle of the night, or very early in the morning. We'll see how well it works.

Please pray for our safety tomorrow. We are supposed to get an insane amount of rain, leading to flooding conditions. That's the kind of weather I would rather watch from the comforts of our dry home! :) Also, please pray that Rebekah's fevers will remain gone!

Rebekah walking last week. She's getting much more stable!

Nancy

Where's the snow??

I'm sitting at our hospital window looking out over a dusting of snow on the rooftops below me. So much for the 3-5 inches that were predicted! The ice, however, is definitely coating all of the treetops that are within my limited view. A couple of the doctors didn't feel that they could make it in this morning, but for the most part, it's business as usual here at the hospital. Minus the visitors, anyway. The lack of people downstairs when I went to get my breakfast was conspicuous! I had never really thought about how busy and bustling the downstairs lobby and atrium area is until it was abruptly silent. Wow. What a difference!

Miss Rebekah is blissfully unaware that she is missing her first snowstorm, however small it is. She slept through the night peacefully except for having to go up to 1/2 liter of oxygen again. Her oxygen sats were just not holding steady. I have to be honest, her sats are fairly low this morning, as well, especially for being on 1/2 liter. She is only at 81-82 right now, but her lungs sound clear, so I'm trying not to get too concerned about it. Surely we couldn't be going into another cold or respiratory illness when we aren't quite over this one, right? Right?

As for the testing on Rebekah's heart, she was finally attached to a Holter monitor last night around 9:30. She was supposed to have been on it by 5:00, but I guess someone in the EKG department had called in sick and they were really backed up. This monitor records all of Rebekah's heart rhythms for a 24 hour period for the doctors to review. The main reason for doing this is to determine if Rebekah's elevated heart rate (and corresponding fussiness) is caused by the medications she is taking (two of them can elevate the heart rate) or if she is having some abnormal heart rhythms. Once the doctors have determined what is going on, they will be able to make changes or adjustments to our medications as necessary. If her heart is having abnormal rhythms, Rebekah will most likely be given a beta blocker (medication) to stop the abnormal rhythm from occurring. The cardiologist and I don't really think that is the case, but they want to rule out any possibilities. As far as Rebekah is concerned, the Holter monitor just gives her another set of wires and leads to chew on! :)

So, that's about all from our arctic winter world. We're here until further notice. I think we're going to take advantage of the TV while we're here and find some figure skating to watch. Did I tell you that Rebekah likes to watch figure skating? Or, maybe I like to watch figure skating with Rebekah! :) Either way, it's a nice way to pass the time. Just as long as we're not still here to watch the Olympic figure skating. Yikes!!

Nancy

A Quick Update

Just wanted to let you all know that Rebekah has been doing better today. Last night there was talk of sending her back to the PICU if her breathing and heart rate had not stabilized, but thankfully once she fell asleep, her body relaxed and calmed down.

We have pretty much remained status quo today with the notable exception of being highly sensitive and irritable from the steroids. We should be able to stop the oral steroid on Saturday.

I'm going back to holding my Bekah-boo and will update if anything else changes!

Nancy

Turning Around

Sorry, I don't have any more cute pictures today. It's hard to get cute, creative pictures when you are in the same place for two weeks!

Rebekah's oxygen was turned down to 0.2 liters for a while today, but turned back up to 0.25 this afternoon. When Rebekah is just resting or still, she does well, but as soon as she gets excited or active for a period of time, she seems to need more oxygen support. She was starting to breathe more rapidly and her breathing was a bit more labored, so we gave her a little more help in that department.

Although Rebekah has been coughing some today, it is noticeably less frequent than yesterday. It is still a "tight" cough that sounds like she's struggling to breathe during her coughing spells, but it's not the forceful, not breathing during the episode coughing that she was having yesterday. Dr. Darby is adding a new medication called Pulmicort to our nebulizer treatments today. It is going to be a long-term (probably 2-3 months) medication to help keep Rebekah's airways open. It should make Rebekah's colds a bit more manageable from home and not result in as many hospital trips - we hope!

Dr. Darby is also considering referring Rebekah to the pediatric pulmonologist here in Greenville. It is something that we have discussed with Dr. DeMoss (Rebekah's pediatrician) before but in the end we decided that her oxygen levels were caused by her cardiac function, not lung function. However, because Rebekah has had two fairly major respiratory illnesses in the last four weeks, Dr. Darby feels that she may be better monitored by a pulmonologist. We should know tomorrow what Dr. Darby's decision will be.

Yesterday Dr. Rauniker (cardiology) told us that he had spoken with the scheduling department at MUSC and had been given a tentative date of February 23 for Rebekah's heart catheterization. I say tentative for two reasons. First, we are concerned about Rebekah coming down with yet another respiratory illness in the next four weeks, similar to the scenario we have right now. Obviously, that would postpone the heart cath again. Second, that week and the week following would be the worst two possible weeks as far as Drew's work schedule. We are willing to do a lot of rearranging and rescheduling to accommodate Rebekah's appointments, but there are things happening those two weeks that just cannot be rescheduled. So, we are discussing either moving the heart cath one week earlier than it is currently scheduled, or two weeks later. We will be seeing Dr. Lucas for a routine visit on February 3 (providing we are not still in the hospital!!) and will discuss the date with him. I'm fine either way as long as we can keep Rebekah free from respiratory illness between now and then!

One of the medications Rebekah is on right now is Orapred, an oral steroid to help open up her airways. It is doing a great job of that, but has the miserable side effect of making Rebekah hyper to the point of jittery. At 5:30 in the morning, this is a very miserable side effect! Rebekah has been having a harder time falling asleep and staying asleep since she started the Orapred. We are hoping to see enough improvement in the next couple of days to take Rebekah off of this medication, but please pray for calmness in the meantime!

I'm off to get some supper before Rebekah wakes up. Thank you for all of your continued prayers and encouragement!

Nancy