We're Heading Home!!

It's official...the paperwork has been signed....the oxygen has been delivered....the prescriptions have been written.....and we are going home!!!

I am so excited that we are going to all be back together again. The boys will be able to play with their sister, something they haven't done in three weeks!! But, it will come with its challenges. Rebekah is going home on oxygen, she is going home on around-the-clock breathing treatments and some new medications. It has been relatively easy here at the hospital to have an entire team of doctors, nurses, patient care technicians, and respiratory therapists all helping out with that care. At home, it will be Drew and I doing the work of that entire team. It will be busy, but at least we will be busy in our own home all together!

Please pray for safe travel for Drew as he comes to get us and then as we get home. The major roads have pretty much been cleared, but the secondary roads are still very icy from what I've heard. We will also have to stop at the pharmacy to get Rebekah's new medications.

Hope you are all having a great day! If it is a little while before you hear from us again, just know that we are at home enjoying being back together again!

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

Decisions

Rebekah has not really had any major changes in the last 24 hours. We go up on oxygen a little and back down a little, but we have not been able to completely come off the oxygen. The breathing treatments seem to maybe be helping a little, but there are times when Rebekah gets quite congested again and struggles to breathe. The g-tube had a major leak this morning, enough to soak Rebekah's shirt all the way around, so we're not sure why that happened, just watching to see if it happens again.

Our decision is this: do we stay in the hospital, or try to go home and manage Rebekah's care at home? If you have seen the news at all today, you are aware that a major snow and ice storm is hitting the southeast today and tomorrow. Here in Greenville, we are forecast to get more than 3 inches of snow followed by sleet and freezing rain. If we do go home, it might be a problem to get back to the hospital should we need to. If we stay at the hospital, I will not be able to see the boys until sometime next week, possibly next Sunday if we are here that long. Dr. Darby is willing to go either way and is leaving the decision up to Drew and I. Dr. Lucas, our cardiologist, is also supposed to be by this afternoon to weigh in on his opinion. I highly value his perspective and am anxious to see what he thinks.

The decision all hinges on the home oxygen being set up today, and that might break the decision altogether. If we can't get the oxygen at home today, then we are staying here. Period. If we are able to get the home oxygen, we will go home with oxygen, a heart/oxygen monitor and around-the-clock breathing treatments in addition to the regular schedule of continuous night feedings and medications.

We want what is best for our whole family, including Rebekah, and sometimes the answer isn't wrapped up with a neat little bow! Please pray that Drew and I and all the doctors involved in Rebekah's care will make the best decision, and that we will have peace about what that decision is. The boys are missing me and haven't seen their sister in three weeks. Right now I feel very torn about where I need to be. We would appreciate your prayers!

Update: Thank you all for your prayers. The decision was ultimately taken out of our hands. The cardiology team decided that we are where we need to be right now, so we are not leaving the hospital. Because of Rebekah's elevated heart rate the last two nights, our cardiologist wanted some tests run overnight and into tomorrow. So, the earliest possible discharge would be late tomorrow or early Sunday. So for now, we're watching snow flurries from our hospital window!

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

Scratch That!

After bragging this afternoon that Rebekah was making a turn-around and seemed to be doing better, tonight we had a u-turn of a different kind. Between 5:30 and 6:00, Rebekah was getting increasingly more agitated and restless, no matter what we tried to calm her down. She finally fell into a restless sleep for a bit only to be awakened by the Respiratory Therapist.

The RT gave Rebekah her nebulizer treatment and chest PT at a few minutes after 6:00, and Rebekah has continued to have a tight, wheezing cough since then. Her heart rate has also been quite high - above 180 for most of the time, only occasionally dropping to the 160's (normal for her is below 150's). She is now back up to 0.5 liters of oxygen just to keep her oxygen saturations in the low 80's. The RT that came in around 9:30 believes that her lungs have more "junk" in them than he heard in previous nights.

Right now, Rebekah has fallen asleep and her sats have come up to the mid 80's on 0.5 liters. We are waiting on the resident to come in and decide if we need a chest x-ray tonight or if it can wait until morning. I will try to update again when I have more information.

Update: The resident that saw Rebekah tonight believes that her elevated heart rate was caused by the effort it was taking for her to breathe. He wants to watch her a little longer and then increase the amount of oxygen she is getting if necessary. Other than that, he does not feel that we need to do anything tonight, unless Rebekah's breathing or heart rate get worse. When we see Rebekah's regular doctor tomorrow, we can decide if there is anything else we should be doing.

Thanks for praying for Rebekah!

Nancy