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

Sunday Morning

Good morning to all! Rebekah had a very stable night, but made no improvements. She had done so well peeing off fluid for a couple of hours last night, but overnight slowed down considerably. The doctors have started a Bumex drip (constant IV drip) in addition to the Bumex and Diurel meds she was getting every six hours. The doctors don't want to make a lot of adjustments or try anything new to get Rebekah's pressures down until the fluid is resolved. So, right now we need lots and lots of fluid output!

In other news, the pressures that we thought had dropped some yesterday afternoon have not really dropped at all. Late last night (much later than my last post), Rebekah's nurse and I realized that the pressure probe inside Rebekah's conduit was not reading accurately. So, after flushing the line, we got a very accurate reading. Rebekah's PA pressure is almost equal to, and sometimes higher than, her systemic pressure. This is not the trend that the doctors wanted to see! They had really hoped to see those numbers growing farther apart. But, again, they are not ready to make a move toward intervention at this point until a lot of that fluid is resolved and we can see how her heart reacts under less stress.

We are at the hospital now, but have not been able to see Rebekah because the doctors are doing a procedure. Whether or not it is on Rebekah or another child we have no idea, but it will be a little longer before we are able to see Rebekah this morning.

Hope you all have a great Sunday!

Nancy

Update

The good news is......Rebekah has started to pee!!!!! It is with the help of some heavy-duty doses of diuretics, but at least she is getting some of the fluid out of her body. We are very excited that she is responding to the medications finally.

As far as the pressures go, Rebekah's LAP and RAP have come down considerably. She has been hanging out in the 15-17 range except when she moves or wakes up when the numbers shoot up to 30+. The PAP (measures the pressures in her new conduit) has still remained high, at times only 3 or 4 points above the systemic pressure. We are still in the post-operative waiting period, though, and the doctors want to wait and see how her heart is doing over the next couple of days before attempting any other interventions.

Rebekah's oxygen saturations have dipped a little lower today, but still much higher than we are used to seeing them. :) Mostly today they have been hanging in the 95-97 range. Rebekah's heart rate has been very steady all day, and her nurse told me that is a good indication that her heart is doing well and there is no bleeding inside her heart.

The goals for Rebekah overnight are to rest calmly, continue to get rid of more fluid and rest calmly. :) For the last few hours, Rebekah has been resting much better. We hope that trend continues overnight.

We enjoyed spending time with Danny and Kelsey Rowan today. They drove down from Greenville to see Rebekah and bring her an adorable teddy bear. It was nice to visit and have some adult talk that didn't completely revolve around medical terms. :) Thanks, Danny and Kelsey, for giving up your Saturday to come and see us!

Please continue to pray for Rebekah tonight. She is stable, but still has a lot of recovery ahead of her. Also, please keep two other families here in the PCICU in prayer. Their little ones are not doing as well, and I am sure that they would appreciate your prayers.

Due to the other issues going on in the PCICU, and a very sick baby in the PICU as well, the doctors have not officially rounded yet tonight. Drew and I were hoping to talk with Dr. Graham about Rebekah's heart function and the time line that he has in mind for monitoring the pressures. It could be quite late when he is available, so we'll see how long we can stay up. We may wait until tomorrow if it gets too late.

Nancy

Not out of the woods yet....

So overnight Rebekah was stable, albeit with high pressures. Today, not so much. She has been having frequent breakthrough periods of startling awake, which causes the pressures in her heart to jump dramatically. The LAP and RAP pressures that I talked about in the previous post (normal is high single digits, post-op normal is low teens, Rebekah has been running close to 20) are jumping up into the 50's during these startle periods that Rebekah is having. Yeah, that's super high and not really great on her heart.

The doctors have also been doing echocardiograms every six hours (at the bedside). Overnight, they noted moderate dysfunction in the right side of her heart. The good news is that it had not gotten any worse this morning. The bad news is that it has not gotten any better, either. You can be sure this is something that the doctors are keeping a very close watch on. They also confirmed that the conduit has narrowed, and they are watching it closely to see if it is narrowing any further.

Believe it or not, Rebekah's heart pressures and function are not the main concern of the doctors right now. The biggest concern is that Rebekah is not peeing. I mean, like almost not at all. Like only 9cc's over two hours. And that was her "big" amount of the morning. The previous hour was only 3cc's. Rebekah has been getting two "big gun" diuretics since midnight, and she is still way overbalanced in her fluid intake/outtake. That fluid is also contributing to the already high pressures in Rebekah's heart. She is also much more swollen today than when we saw her yesterday due to all of the fluid retention. There is another diuretic that the doctors are probably going to try later this afternoon if the noon doses of the other diuretics don't produce the results we need.

So, the two biggest concerns of the day are for Rebekah to start urinating (in large amounts) and for her to keep calm and still so the pressures in her heart don't skyrocket. As always, we will update with other news as things progress.

Good Morning!

Thank you all so much for your prayers, emails, comments and texts! Drew and I were able to get some much-needed sleep last night. I fell into bed around 10:30, and I heard nothing until about 7:30 this morning. It was wonderful!!

Rebekah, on the other hand, did not sleep so soundly last night. Her nurse said she tossed and turned through the night. They have not been able to come up with an effective cocktail of drugs to keep her sedated. She is on a morphine drip, IV injections of Versed and morphine in between, and they also added in Precedex. All of that, and she still had a restless night! Our little girl is a fighter! The doctors would still like her to be sedated throughout most of today to let her heart and body heal from the surgery. Also, all of that moving and thrashing has the potential to rip out tubing, IV's, pacing wires and chest tubes, not to mention the ventilator. So, if you would like to pray specifically, please pray that Rebekah can rest peacefully. I'm sure her nurse would thank you for those prayers. :)

We were able to talk with Dr. Graham (one of our favorites!!) before we left the hospital last night. He said the pressures on the right side of Rebekah's heart were disappointing, but they are going to hold off a few days to see if her heart begins to lower the pressure on its own before doing any more interventions. Basically, Dr. Graham gave us three potential outcomes.

1) The pressures in Rebekah's heart come down on their own and no intervention is needed. (Best case scenario)
2) The pressures in Rebekah's heart remain high, but her heart tolerates the increased pressure for a few months (with or without medication), and in a few months we come back for a heart catheterization to measure the pressures and make adjustments as necessary. (Not the best, but certainly not a bad option)
3) The pressures in Rebekah's heart remain high, and her heart begins to tire and doesn't want to keep pumping against that much pressure.....also known as heart failure. In this scenario, we would have to intervene immediately. Hopefully a procedure could be done in the cath lab, but there is a possibility of another trip to the OR if the pressures cannot be lowered by a cath procedure. (Worst case scenario)

As of last night, Rebekah actually had three different pressures that were high. The most concerning is the PAP (pulmonary artery pressure). She has never had this measurement before, because she did not have a pulmonary artery before yesterday's surgery. This measurement is a measure of the pressure that is in the new conduit taking blood from the right side of her heart into her left lung. Normal PAP pressure is about 1/3 of systolic blood pressure (the top number on a normal blood pressure reading you might have at the doctor's office). Rebekah's systolic pressures yesterday were in the mid 70's to high 80's. Her PAP was in the high 60's to mid 70's. As you can see, it is significantly higher than normal, and too high even for Rebekah's anatomy. The doctors would like to see it at least as low as half of the systolic number. So we are looking for numbers that are somewhere in the upper 30's to mid 40's. Based on a bedside echocardiogram that Dr. Bradley did yesterday, he feels that for some reason this conduit is beginning to narrow. Not good! This conduit is the passage way for an amount of blood that is already too large for the space that it is flowing to. That in itself is enough to create higher pressures, which Dr. Bradley had warned us about on Tuesday. If that conduit narrows, it becomes an even smaller space for that blood to flow through. I think this is one of Dr. Graham's more pressing concerns. If that conduit continues to narrow, or the pressures continue to remain as high as they are, or higher, we got the impression that Rebekah would be headed to the cath lab in the next few days for them to try to balloon that conduit open.

The other two pressures that are high are the LAP (left atrial pressure) and RAP (right atrial pressure). These pressures are a measure of the pressure in the top two chambers of Rebekah's heart. You know, the chambers which now have a hole between them to try to equalize some of the pressure building on the right side of Rebekah's heart. I'm not really sure what the plan is for correcting, or lowering, that pressure, except that the doctors are going to give it a few days and see if that pressure drops as the heart heals. Normal readings for those pressures would be high single digits (8 or 9). Normal post-op readings would be as high as the low teens. We saw Rebekah's pressures as high as the low 20's last night before we left.

Other than those numbers, everything else looks great! Rebekah's oxygen saturations are reading between 97 and 99%; those are numbers we have never seen! When she came in for surgery, her sats were between 75 and 80% on half a liter of oxygen, so we are very excited to see "normal" saturations!

That's about all for right now. I'm sure we will have more information to share as the day progresses, but I just wanted to get a quick post to update you on where we are right now. Thanks for praying!!

Nancy