Feeling Better!

I can tell Rebekah is certainly beginning to feel better!  She wants to be out of the bed and socializing with everyone!  Since Rebekah is not plugged in to oxygen right now, she loved the freedom of following the nurses around the unit.  She spent the better part of an hour hanging out at the nurses station tonight charming all of the nurses. :)  The unit has a new telemetry system (monitors heart rate and oxygen saturations) that is wireless, so the kids just have a small white box with the leads attached to it, instead of being confined to a bed with a monitor beside them.  It's great for the kids!!  Rebekah picks up her box and away she goes! :)

The theme of the day was giraffe.  :)  Yes, it totally all matches, and yes, I have a blast dressing Rebekah!  I'm already mourning the fact that by the time Rebekah has another surgery, she will be too big to wear the cute onsies and leg warmers. So sad!

Rebekah is totally in love with Mickey Mouse right now.  Do you know how many stores do NOT carry Mickey Mouse??!!  I searched through Walmart, Target and an entire mall (with no Disney store) before I finally found this Mickey at KMart.  Rebekah has been best buddies with him ever since. :)  I figured if a girl goes through open heart surgery, the least she can have is a Mickey Mouse!

We had a nice surprise today - MAIL!!  Rebekah received two cards and a package today, and she was delighted!  She very meticulously studied the cards and looked at all the pictures on them.  It was really sweet.  She also very much enjoyed the new book she received, and spent a lot of time looking at the pictures after we read it.  Thank you for the enjoyable surprise!

Tomorrow morning Rebekah will be having another chest x-ray.  I'm really hoping to see some good results from this one!  As of this morning's x-ray (at 6:30 in the morning!!), there was still a large area of fluid on Rebekah's right lung and a small collapsed area in Rebekah's left lung.  Both are no worse than they were before, but they don't seem to be much improved from two days ago.  The good news is that Rebekah is handling it well since she was able to go without oxygen all day and keep her sats up!

Rebekah finally settled down and went to sleep.  :)  I told you she was feeling better!  She's starting to play her "stay-up-till-midnight-and-sleep-all-day" hospital routine.  Better get out of here fast, or she's going to have a serious adjustment when we get back home.  :)

As you pray for Rebekah, please continue praying for baby Jackson.  He had his best day ever on Sunday, and I know his parents needed that bit of encouragement.  His battle is far from over, so please remember him in prayer.  And we have another little heart buddy named Jude who also needs prayer.  He has a big test tomorrow to see if he can make it off of the heart/lung bypass machine.  If he is strong enough, then he will be scheduled for his first open heart surgery a day or two later.  His parents would also appreciate your prayers.

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

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

Wednesday Update

 Sorry this post is a bit later than usual today.  We've been busy taking care of Rebekah and talking to her nurse and doctors since we came in the room!  It's surprisingly busy to simply sit around at your child's bedside in the hospital.  :)

Rebekah found her fingers yesterday afternoon, but just briefly.  She does have an IV in that wrist, so it makes getting her fingers into her mouth a little challenging.  Plus, she doesn't have too much coordination back yet, so keeping her fingers in her mouth has also been a bit of a challenge.

We came in this morning just as the doctors were rounding, so it was nice to get the quick rundown of today's plan from them.  Basically, the plan is to get Rebekah moving a bit more - not necessarily walking, but at least sitting up straighter.  The head of her bed is elevated, so she's sleeping in a semi-sitting up position, but she tends to slide downward into a little ball.  Rebekah has several pockets of atelectasis (collapsing) throughout both lungs, so the doctors are working on getting her lungs to expand more and open up.  The best ways to do that are movement, not lying down flat, and coughing.  If Rebekah knew how to blow, she would also be blowing bubbles to help.  :)

As you can see from the above picture, Rebekah was less than pleased to be up and out of the bed.  After about five minutes, she was asking to get back in the bed.  I think she lasted on Drew's lap about 15 or 20 minutes total, which is a good start.  She is resting in bed right now and we will probably get her up again after lunch.

Rebekah tried her best to sleep in Daddy's lap, but she was very restless.  It seems to be hard for her to find any type of comfortable position right now.  She says "no" if we ask if she hurts, but she is whimpering some and just overall feels yucky.  The nurses are keeping up with her pain protocol, but recovery from open heart surgery is just plain miserable even with pain meds.

Bek finally decided that sleeping across Daddy's arm was the best she was going to get, so that's how she finally settled down.  But only for a few minutes and then we let her get back into her bed.  The doctors did order chest PT to be started today, so that should help open her lungs up as well.  Rebekah loves the vibration of the percussor, and she actually dozed off while the respiratory therapist was working on her.  :)

Rebekah's throat seems to be very sore still (and I'm sure it is!!).  Her cry sounds like a small kitten meowing, and her voice is very soft and high-pitched.  It will improve over time, but for now it is very pitiful sounding.

It seems like Rebekah's stomach has begun to wake up just a little bit.  She tolerated the Pedialyte last night pretty well.  It ran it at just a dribble, really, so there was not much in her stomach at once.  This morning she did have some apple juice and Pedialyte left in her stomach, so we're kind of watching to see how that progresses during the day.

I think that's about all the updates for now.  We will certainly update again if anything changes, or this evening if all remains quiet today.  Oh, and as of this morning Rebekah's temp was just slightly elevated, so it is coming down much closer to normal!  :)

Nancy

There's no place like home!

I just wanted to post a quick update to let you all know that we are home!!! Rebekah was very excited to see her brothers, but she was very tired. She went to bed at 7:00 and we haven't heard a sound from her since! I'm sure she is enjoying being back in her room and in her crib. I know I am looking forward to sleeping in my bed tonight!

Rebekah did come home with oxygen, and she will be staying on it until at least her next cardiology appointment. Unlike before her surgery, Rebekah does not need the oxygen to keep her sats up. Rather, this is called "oxygen therapy." It some studies, oxygen has been shown to lower pulmonary hypertension, so we are going to try oxygen for the next month and then see if it has helped. If Rebekah's pressures are lower, she will likely remain on the oxygen until her heart catheterization in March. If there is no change in the pressure, Dr. Lucas will probably take Rebekah off the oxygen. We are hoping that the oxygen will lower the pressure in her heart at least a little bit. If going back on oxygen is a way to do that, then we are willing to try it. I'm hoping that she will be on oxygen until March!

Thank you to everyone for your prayers while we were in the hospital. Please continue to pray for Rebekah. She still has a cold, but it seems that she is getting over it. Pray that she will continue to be as healthy as possible through the winter months.

Nancy

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

Saturday

We have had quite a boring Saturday here in Rebekah's room. I guess that's the best kind to have when you're in the hospital! :) Rebekah has still had a fever for most of today, so the doctors are pretty sure she has something going on. This morning during rounds, the resident told us that they were going to watch Rebekah to see if she continued to have a fever today (she did) and that tomorrow they would repeat the blood work. Yesterday's blood work showed elevated white blood cell counts, which would indicate some kind of infection. However, the WBC count was not high enough to indicate that an antibiotic needed to be started. With Rebekah's continued fever today, we are guessing that tomorrow's blood work will show an even higher WBC count.

Because of Rebekah's fever, she was not allowed to leave her room or go to the playroom today. We have spent a lot of today rocking in the rocking chair, watching Baby Einstein DVD's and baby sign language DVD's. Those are Rebekah's favorites! We were also able to bring some toys back to the room from the playroom, so we've been playing with Mega blocks in our room.

Overall Rebekah has had a good day despite the fevers. She has periods of fussiness and times when she very obviously does not feel good, but she has also had brief times of playing and being cute! After days of observing doctors and nurses and Mommy and Daddy washing their hands, Rebekah has now learned the sign for handwashing. It is really cute to see her laying in bed asking to wash her hands! :) We also "bent" the rules a little today and called the boys from Rebekah's room. Technically we should leave the patient area to make calls, but the boys really enjoyed talking to Rebekah. She held the phone a long time listening to them talk, and she kept waving every time we told her to tell the boys "hi." I think she misses those boys - I know Drew and I do!

I don't think I've mentioned it on the blog before, but a day or so after surgery, I noticed a large (maybe 2-inch) area behind Rebekah's left ear at her hairline. It is quite red and swollen. When I first brought it to Dr. Graham's attention, he felt that Rebekah may have been laying on something during the 8+ hours she was in the OR that caused a reaction with her skin. However, the area has not improved any in over a week. When I asked the resident about it this yesterday, he didn't really know what to think of it. After doing some thinking and researching, this morning he told me that he feels maybe Rebekah had some blood pool there during surgery and formed a clot that will take weeks to dissipate. He gave me a few signs to watch for (growing larger, becoming redder, fluid-filled) and said that if any of those things occurred, that they would want to know immediately. Otherwise, he said we pretty much just wait for her body to break it down over time. Has anyone else heard of this? I can't upload a picture right now to show you what it looks like (I couldn't get a clear/not blurry picture of it with my cell phone.). If we get home and it still looks like this, I will upload a picture so you all can see it. I know for sure that it was not there prior to surgery, and I know for sure I noticed it at least the Saturday evening after surgery.

So the plan is to stay put until this fever gets figured out. I am happy to say that Rebekah's lungs are much better-sounding today. We can hear (or not hear!) the lack of "junk" rattling around in her chest when she breathes. Oh, and if you missed the earlier picture, Rebekah is no longer on oxygen!!! Our night nurse was able to wean Rebekah down during the night, and we have not had to turn it back on today. There have been a few times when Rebekah's sats dip into the 70's, but she is always able to bring it right back up within a minute or two. The only concern would be is if it took her a long time to get her sats back up into the 90's. We are thrilled at the thought of going home without oxygen!!

Nancy

Post-op Day 6

We are waiting for news on a bed upstairs for Rebekah! :) This means she will be going to the step-down unit, which is one step closer to going home. We are currently waiting on a bed to be available upstairs, and then we should be moving. Hopefully by lunch time! The only little catch in the plan is that Rebekah's temperature keeps climbing, and that could keep her in the PCICU if it gets higher. She had Tylenol around 9:45 this morning, so hopefully it will come down some.

Rebekah is still getting chest PT to try to open her left lung back up. This morning's x-ray showed the left lung about the same and a little more haziness (junk) in her right lung than was there yesterday. We are hoping that once we get upstairs and she feels like moving around a little more that she will be able to cough some of that up. We will continue the chest PT upstairs on the floor.

Daddy has been able to hold his little girl a few times now. He was able to hold her last night for quite a while and again this morning. Rebekah has been so relaxed when she is in her daddy's lap. It's good therapy for both of them! :)

Hopefully our next post will be from upstairs..... We'll see how the day progresses!

Nancy

Post-op Day 5

Today is a big day for Miss Rebekah! She is on the schedule to have her arterial lines removed! This means that she will only have a chest tube and a couple of other IV's left. The doctors continue to be baffled by her up-and-down pressures, but overall Rebekah is tolerating it well. So, they are going to leave well enough alone and maybe bring Rebekah back in a few months for a heart catheterization to see how the pressures look over time. Of course, Rebekah will have frequent check-ups and echocardiograms at her cardiologist's office at home, too.

So from what Dr. Graham said this morning, Rebekah will hang out here in the PCICU for the rest of today and tonight. They plan on making the "big move" upstairs to 7C sometime tomorrow, if everything still looks good.

Rebekah still has a lot of junk in her lungs that needs to be coughed up. Her respiratory therapists have been great about working on it, but she's still not over it yet. There is still a collapsed area in her left lung as well.

As far as when we will come home.....we're really not sure! Once Rebekah gets to 7C, she will need to have her chest tube removed. That won't be done until it has not had any drainage at all for at least 24 hours. Rebekah is still running a fever off and on, so that will have to go away before we can leave. And, of course, the lung congestion has to be cleared up, too. So, depending on how quickly Rebekah can get through those hurdles will determine how long we stay here.

The big prayer request for today is......sleep! Rebekah has been awake for almost 24 hours, with the exception of a few cat naps. What she needs is to really sleep for several hours, or overnight. Last night she wasn't fussy or crying, but she didn't sleep, either. Apparently, she and her nurse had a little party. We came in to find Rebekah and her bed all decked out with fuzzy blankets, hair bows and bracelets. There were also cheerios all over the floor. Even Dr. Graham commented this morning that they are not used to a crunchy floor during rounds. :) So far today Rebekah has been very restless and not sleeping more than 15 minutes or so at a time.

Hopefully we will have a very peaceful, uneventful and sleepy day!!

Nancy

P.S. In between writing this post and getting it published, Rebekah had a little "blue" spell. She woke up after a short (10 minute) nap and was very fussy. Her heartrate shot way up and her O2 sats dropped to the upper 70's. Dr. Graham was right there and turned her oxygen up and we get her calmed back down. The bottom line is that she has got to clear the junk out of her lung to get over this hump. Hopefully she will feel more like moving around later when her lines come out.

Quick update

We just kissed Rebekah and tucked her in for the night. All things considered, she had a pretty good day. Rebekah was awake for a good portion of the day, although she seemed to be very restless and unable to settle into a deep sleep today. The nurses were good about staying on top of her pain medication, so we aren't sure if she was in more pain that we realize, or she liked the morphine drip a little too much, or if something else is brewing. Her lungs still sound pretty junky this evening, but she has been sitting up (with assistance) and has had a few good coughs today.

One of the big questions we had after Rebekah was extubated was how orally averse she would be. So far, she has not wanted her little taggie blanket or her fingers in her mouth. Prior to surgery, she would stuff a corner of her taggie in her mouth, along with two of her fingers and that's how she would fall asleep. For her not to want that in her mouth is a big deal. So, we were concerned about how well she would go back to feeding. Rebekah did take her sippy cup a few times today and drank a few swallows of milk. That was a great start! She refused any cheerios, and she gets very agitated when she sees anything coming toward her mouth - even my finger with some lip balm, which she loves! So, we may have to work on getting her used to things being in and around her mouth again.

Rebekah is also very weak now compared to where she was pre-surgery. At this point, she cannot sit up without assistance, or even hold her head up on her own. She is scooting around in her crib just a bit, mostly just moving her legs or arms around. We will definitely have some ground to make up once she is feeling up to moving. Today was unbelievably busy in the unit, but I am planning on talking to the doctors tomorrow about when we can start PT and OT in the unit.

Rebekah's pressures remained high pretty much all day. Her heartrate and blood pressure were also higher than they has been in the last few days. Right now the doctors are waiting for another day to see if her numbers go down any. There is a possibility that Rebekah may start on a blood pressure medication, but the doctors would like to give her one more day to get her lungs a little more clear and a little more fluid off before determining whether or not she needs the blood pressure medicine. Rebekah's temperature has also been climbing throughout the afternoon, and when we left it was around 100.6. It has been up and down since she came out of surgery, but we're hoping it starts staying down soon!

Thank you all for your prayers for Rebekah! It means so much to our family!

Nancy

Post-op Day 4

If you saw the previous post, you know already that Rebekah is doing well this morning! She was able to sit up for a bit with the help of Daddy and the respiratory therapist, John. It didn't last long, maybe a minute or two, but at least she was up for a bit.

Rebekah had a good night and rested well. She had a few periods of being alert and looking around, but for the most part she slept all night.

This morning brought a few bumps in the road, although Rebekah seems to be handling them well. Each child in the PCICU has a chest x-ray in the early morning hours, and this morning's x-ray found that part of Rebekah's lower left lung has collapsed. This is not uncommon or alarming, but it does merit concern since this is Rebekah's only working lung. Rebekah's lungs also sound very "junky" and the doctors and respiratory therapists are working hard to get that junk cleared from her lungs before it becomes an infection. Right now the plan is to sit Rebekah up three times during each shift and maybe start a bit of chest PT if Rebekah can tolerate the pounding on her back. That part is still up in the air. Rebekah is on an antibiotic to try to prevent a bacterial infection, so that should help.

Dr. Graham did another echo on Rebekah this morning while we were there and said that the function in the left side of Rebekah's heart looks great. In fact, he said it looks better than they would have expected. The right side is still not squeezing like they would like to see, but he expects improved function over time. Rebekah's pressures are back up today, so we're kind of waiting to see what comes of that.

Also, Rebekah had started getting some pediasure in her g-tube last night, but the feeds were turned off this morning because she is holding food in her stomach and not digesting it. That's not a big deal, and certainly not uncommon post-surgery, but is something that they will watch. They will probably try feeds again later this afternoon.

Today's plan is mostly just focus on getting the lungs cleared up. Dr. Graham said there had been talk of pulling one of the chest tubes and maybe the pacing wires today, but since Rebekah's pressures are up again, they want to leave everything as is. They are planning to let Rebekah try some food as soon as she wakes up from her nap.

Oh, one other thing I have forgotten to mention the last couple of days is that Rebekah is struggling to keep her Potassium levels up. Most all post-surgery patients struggle, but Rebekah seems to be having a tougher time with it. Partly it is due to the diuretcis, which pulls potassium out of her system, and partly it is due to DiGeorge syndrome. The nurses are very on top of giving her replacement potassium around the clock. We are all hoping when she gets off of more of the diuretics and she starts eating again that the situation will take care of itself.

That's the news for now......will update later this afternoon or if something changes before then! :)

Nancy

Not to leave you hanging....

Rebekah was not the one who had a procedure done this morning. It was her little buddy in the bed next to us. He had to have a chest tube inserted to drain some fluid off his lungs.

Rebekah looks very cute today. She has a purple bow in her hair and purple socks on and all of her little friends (stuffed animals) are hanging out in her crib with her. She has gotten so many comments on the big pink hippo that she got from our church before surgery. It is a little eye-catching! :)

We were able to talk with Dr. Graham just a few minutes ago, and he is planning to let Rebekah have another day of rest today. Yesterday there was talk of extubating Rebekah today, but that has been placed on hold until Rebekah gets rid of more fluid. This morning the doctors increased the amount of Diurel that Rebekah is getting, and she is still on the Bumex every 6 hours as well as the Bumex drip. We're hoping to see lots of output today!

Dr. Graham did favor reducing the amount of Rebekah's morphine today to allow her body to take over more work on its own. Right now, Rebekah is on a Precedex drip, a morphine drip and bolus morphine and versed combinations every six hours. That's a lot of sedation! He wants to gradually reduce the amount of morphine that Rebekah is getting and increase the Precedex if necessary. So, the Precedex will allow Rebekah's body to wake up without Rebekah being consciously awake, and that is the goal. Dr. Graham still wants Rebekah to sleep, but he wants her to start breathing more on her own. So far this morning, Rebekah is making an effort to breathe over the ventilator, and that is good news!

Rebekah did have an echocardiogram and chest x-rays early this morning. The echo still showed dysfunction in the right side of her heart, but Dr. Graham thought it looked a slight bit better than yesterday. Rebekah's lungs are very wet, again due to excess fluid, but that is another reason to keep her on the vent for today. There is no sense in making her body work even harder than it already will when we transition her off the vent.

That's about it for the morning update. As I have been sitting here, the diuretics are beginning to work a little, so that's good news! So far this morning Rebekah has a negative fluid balance, which is exactly what they want to see at the end of the day. (Negative fluid balance means that she peed out more fluid than she took in. That's what will get rid of the excess fluid.) Oh, Dr. Graham also said they will begin feeding Rebekah small amounts (of what, I have no idea) to see how her stomach can handle the food. Probably they will start with Pedialyte or Pediasure and go from there.

Thanks for praying for our sweet Rebekah Grace!!

Nancy

Counting Down!

The days are flying fast, and we are trying to prepare ourselves for Rebekah's surgery that is right around the corner. She is scheduled for open heart surgery on November 3. This will be a complete truncus repair, and the surgery itself is anticipated to take 6-8 hours.

Dr. Scott Bradley, the head pediatric cardiothoracic surgeon at MUSC will be Rebekah's surgeon from now on. If you remember from last summer, Dr. Ty Hsia was Rebekah's first surgeon, but he was offered a position at a prestigious hospital in London several months ago, so he is no longer at MUSC.

I found this information online that pretty accurately sums up the extent of Rebekah's truncus repair.

The surgical repair of truncus arteriosus requires the use of heart-lung bypass machine support. It involves three major components:

• Separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta);
• closure of the ventricular septal defect using a patch
• creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery.

The one glaring difference between this description and Rebekah's surgery is that Dr. Bradley is likely to remove Rebekah's right lung during surgery. We have discussed the possibility with several of Rebekah's doctors, and the general consensus is that at some point Rebekah's lung will, not might, become infected, and when, not if, that lung becomes infected, it will be very dangerous for Rebekah. In fact, Rebekah's pulmonologist used words like life-threatening infection, and certain emergency resection when I asked if it would be possible for Rebekah to keep her lung. Given that information, combined with Rebekah's cardiologist's opinion, lead us to believe that Dr. Bradley will be removing Rebekah's right lung.

How do we feel about all that? Well, obviously, it was not our first choice! :) But we feel very informed about this decision, and know that ultimately, Dr. Bradley will recommend what is best for Rebekah. There are three criteria that Dr. Bradley will consider during surgery. If any one of the three is not met, then he will remove the lung. Dr. Bradley's criteria are:

1) The lung tissue itself - is it healthy? We know that the lung itself is a good size, but Dr. Lucas told us that often the tissue is dying or decaying when there is no blood flow through the lung.

2) Is there adequate arterial supply? This is the amount of blood flowing to the lung tissue itself. It has nothing to do with blood flowing to the lung to receive oxygen.

3) Is there good (or any!) perfusion? This is the amount of blood flowing into the lung to receive oxygen to carry out to the body. Right now from all of the tests, the doctors are pretty sure that Rebekah has less than 2% perfusion in her right lung.

So, what else has been going on besides surgery talk? Well, Rebekah should be getting some new wheels near the end of October! We have been using our old stroller and pushing/pulling her oxygen tank along with it. To say that it is cumbersome is an unbelievable understatement! Rebekah's new chair/stroller will have an oxygen tank holder mounted on the side so that I can have a hand free for other things. It also has room underneath for Rebekah's O2 monitor if we were out for a long period of time and needed it with us. The seat is completely customizable and will grow with Rebekah. It is also a tilt-in-space seat, which means that the seat rotates from 90 to 180 degrees and stops anywhere in between.

Rebekah's new chair (teddy bear not included)! :)

We have had some fun days just hanging out at home and playing. Aaron and Caleb are very patient with Rebekah and usually let her in on whatever they are playing with.

Aaron and Rebekah

Pretty girl!

Aaron specifically requested this outfit a few days ago because he loves the bracelet that matches it. Guess we'll have to find a fall/winter outfit in these colors so Rebekah can still wear the bracelet. :)

Sweet little peanuts!

Rebekah all dressed up for church!

Something (someone) is missing here..........

Found her!

Rebekah has become more and more mobile lately. It is very unusual to find Rebekah where I left her now. She has become adept at scooting around the house and exploring all kinds of things. I literally "lost" her in the house and followed her tubing to look for her. I found Rebekah in my laundry room with the door closed. She was taking my clean laundry out of the laundry basket. Now if I can just teach her to fold it...... :)

I'm cute.....tubes and all!

I love my swing!!

Now that the weather has been (a little) cooler, we have enjoyed some time outside. We had not been able to take Rebekah out much in the hot summer because it is easy for her to become overheated. She really enjoyed being able to swing and play outside this weekend!

My newest skill!

It took me (or Rebekah) several hours to actually capture this picture. Rebekah has been doing this hand/feet position for a few days. Although she isn't doing more than holding the position for a few seconds, at least she is working at it. I can't say enough about how much the stander has helped strengthen Rebekah's muscles. She really wants to walk and run with her brothers, but is not strong enough yet. She gets an "A" for effort, though! Rebekah is one determined little girl! Just this week in pool therapy, Rebekah stood for almost 5 seconds by herself with no support! That was huge!!!

Rebekah and Uncle David

Thank you all for your continued prayers! We ask that you continue to pray specifically for our upcoming trip to Charleston and Rebekah's surgery. The doctors are estimating a 2-3 week hospital stay if things go well, so it will be a stressful time for all of us. The boys are taking it in stride, though, and we are so thankful for that!

Nancy

Why do something when you can wait?

While it sounds a bit unconventional in everyday life, I am pleased that this is the philosophy that Rebekah's surgeon and doctors have decided to use in regards to her heart surgery.

Drew and I (and Rebekah) met with Dr. Lucas yesterday (Wednesday) to discuss the results of the catheterization that Rebekah had two weeks ago. While we knew that the doctor did not get all of the results that he wanted, we did not realize how little he got. I think I mentioned on here at the time of the cath that the doctor was not able to gain access into Rebekah's artery in her right leg/groin area. We didn't realize that was such a big deal until yesterday. Basically, the doctors only got half of the information they were looking for since they could only go through one artery.

I like to play in my exersaucer!

From what information they did get at the cath, it does not appear that Rebekah has any usable collateral arteries to create a right pulmonary artery with. Dr. Baker, who did the heart cath, had told us that Rebekah would likely go into her heart surgery without a sure plan of whether or not those collaterals would be usable. When the surgery was completed, the surgeon would be able to tell us that he either was able to use the collaterals or he wasn't. That simple. Or not.

My first bite of ice cream....yummy!! (Please excuse the bedhead!)

Apparently Dr. Bradley (surgeon) wants a more definite game plan before going into surgery with Rebekah, so we are traveling back to Charleston tomorrow (Friday) for a CT angiogram and an ultrasound of Rebekah's groin. The CT scan will hopefully give the doctors and surgeon a better idea of the growth (or non-growth) of Rebekah's collateral arteries. From there, the surgeon can proceed with plans for Rebekah's heart surgery. The ultrasound we are a bit unclear about. All of the people "in the know" were apparently already gone for the day before we were called and informed of the ultrasound this afternoon. We are guessing that it is to check on the healing of the fistula that was made during the last catheterization, but we will have to wait until tomorrow to find out for sure.

I'm practicing sitting up more and more!

Based on the results of tomorrow's CT scan, the surgeon will decide on one of two plans. The first would be that Rebekah's collateral arteries have grown amazingly (reality: no one in the medical field believes this to be the case) and Dr. Bradley would proceed with a full repair of Rebekah's heart and lung in the next few weeks.

Finally meeting Uncle Carl and Aunt Wilma. We loved having them visit!

The second, and much more likely, outcome of tomorrow's CT scan is that the doctor finds no usable collateral arteries and the plan will be to wait as long as Rebekah's heart shows no signs of failure to do her heart repair. This option would commit her to having a single-lung physiology for the rest of her life (barring a miracle and the collaterals actually growing). The reason for waiting is basically the title of my post. If Rebekah doesn't actually need to have surgery right now, and she is no worse off for waiting, why rush into surgery just to have it done?

I'm working on clapping my hands now.

The way Drew and I are choosing to look at waiting is that it is all the more benefit to Rebekah. First and foremost, we have time to continue praying for those collaterals to grow. The doctors have only said that it is unlikely for them to start growing at this point, but it's not impossible. So, we continue to pray. Secondly, waiting to have surgery will allow Rebekah to continue growing, getting stronger and getting bigger. All of those things will be to her advantage going into the surgery. Thirdly, the longer we wait to have this surgery, the longer we can wait to have the next surgery. Repeat surgeries before adulthood are caused by growth, not the wearing out of parts. So, the bigger Rebekah is when she has her initial heart repair, the bigger the parts the surgeon can use and the longer we can postpone Rebekah's next surgery. Sounds good to me!

Helping Mommy make Zachary's birthday cake. Mommy let me try some frosting, but don't tell!!

So, tomorrow morning we are leaving for Charleston in order to be there for Rebekah's 1:00 CT scan. Please pray that the scan goes well and that the radiologist can get clear, accurate pictures of Rebekah's anatomy. If the CT scan is not successful, Rebekah will be having another catheterization in the near future, and this time it would be a little more invasive in order for the doctors to find the information they need.

Looking cute in my girly overalls!

In other, very good news, Rebekah's diarrhea has been gone for a little over a week!! The reason? We started feeding her food! I know, seems like such a simple thing, but with Rebekah, we have learned that nothing is simple! :) Rebekah has had pears, squash and sweet potatoes in the last two and a half weeks. She is loving food and other than being a little uncoordinated in getting the food off the spoon, she is doing a great job at eating!

I love eating food!

Please remember us in prayer tomorrow as we will have a very long day. We are making this a one-day trip in order to avoid the cost of staying over tomorrow night. So we will have 8+ hours of driving plus time in the hospital tomorrow. All of that and neither Drew nor I are feeling well right now. We are still fighting allergy and cold symptoms. Above all, please pray that the tests go well and pray, pray, pray that those collaterals start growing!

Nancy

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

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