Wednesday Morning

Good morning!! We are learning quickly that Rebekah Grace has her own schedule and her own way of doing things. Daddy and Mommy just need to get with the program and figure it out!! :)

Rebekah was doing very well yesterday morning on the ventilator - too well, in fact! She was breathing over the vent more than double the lowest setting that they could put it on and she built up some excess carbon dioxide in her lungs and then quit breathing - again.

The doctors had been waiting on results from Rebekah's CT-scan to determine whether or not they could take her off the medication that made her forget to breathe. They had those results early yesterday afternoon and made the determination that they could indeed stop giving Rebekah the medication, although not for the reason we had hoped. The concern had been finding the artery that supplied blood from Rebekah's heart to her right lung, and we now know that the doctors could not find it because it does not exist. Rebekah's right lung is receiving adequate blood flow to grow and develop from various small veins and capillaries, but her right lung will have no functional value in her body. There is no way for the heart to pump un-oxygenated blood into that lung for it to receive oxygen, and there is no medical way for the doctors to create an artificial artery for that lung. The doctors believe that her left lung will probably grow larger (than in a normal child) as Rebekah grows to compensate for the loss of her right lung. Rebekah should not have any noticeable side effects from functioning on one lung other than possibly getting winded a little easier than her peers.

Rebekah with just a nasal cannula after coming off the vent.

She was trying to open her eyes a little bit. :)

Daddy and daughter....he's wrapped around her little finger!

Rebekah Tuesday night. Yes, she's back on the vent.

So, the doctors took the vent out early Tuesday afternoon and were hopeful that Rebekah would do well. She did quite well for a while, but then had 3 episodes of forgetting to breathe. The third one actually took her a while to bounce back from and the respiratory therapist had to work to stabilize her breathing again. So late yesterday afternoon we all felt it was in Rebekah's best interest to re-intubate her and allow her body to rest through the night. The doctors still feel that the apnea episodes are due to the medication remaining in her body and believe that once the medicine completely clears her system that she will not have any more breathing problems. Thankfully, they did not have any trouble getting the vent in this time (she has a small airway and it is positioned a little differently than in most babies) and she was doing well when we left her last night.

There are a couple of other possibilities to explain Rebekah's apnea episodes. One is that she could have had some bleeding in or on her brain, but the doctors have completely ruled that out. Any type of bleeding on her brain would have shown up in her CT scan yesterday. We are very thankful that we can rule out that cause! The other possibility is that Rebekah could have some kind of infection which might cause her to be extra sleepy and have apnea spells. Her nurse sent blood and urine cultures to the lab last night to check for that possibility, and the doctors have put her on a general antibiotic just as a precautionary measure. The results from the cultures will come back tomorrow and the doctors will either discontinue the antibiotics if there is no infection or switch her to a more effective antibiotic when they determine exactly what type of infection she might have.

As far as a date for Rebekah's surgery, we are not sure yet. Unless some type of emergency situation that we are not anticipating comes up, the surgeons are leaning toward doing the surgery sometime early next week. All of her doctors and surgeons will be having a meeting tomorrow and we may know something more then.

For today, our big prayer request is that Rebekah will stabilize her breathing on her own so that she will not have to be on the ventilator any longer than necessary. Obviously, she will be back on it during and after surgery, but her lungs need the practice of working on their own as much as possible.

We will be posting more updates and information as we get it. Thank you for all of your prayers, comments and emails!! It is so encouraging to know how many people are praying for Rebekah!

Nancy