Fun at the beach!

All is well at CB. Macy and her cousins are having a blast. We got both of the twins out to the beach and they did really well. I'll upload some pictures later.

JB

The weekend is here and things are going much better. Audrey came home Wednesday night from the PICU at Cape Fear Valley. She's finally settled in at home and things are slowly getting back into a routine. Audrey is still getting adjusted to some of her new medications so she is kind of sleepy throughout the day. She's had no seizure activity for about 8 days, and her respiratory status is probably the best it has been in a very long while. We had some issues with her new mickey button leaking her formula all over the place so we were concerned because she had lost an entire kilogram while in the hospital. I messed with the button today for about an hour, and I have finally got it straight. When in doubt just remove it......and put it back in.......:)) We're heading to our beach house tomorrow to some long awaited rest. This will be the twins first trip to their beach home so we're excited to get them in the salt air. As always, Macy is totally pumped and has list of favorite things to do when we get there. All of Shannon's family is meeting us down there so it should be a great time. Shannon and I certainly appreciate everyone's prayers and concern. I would also like to thank all of Audrey's Angels, the Cape Fear PICU nursing staff, for providing her such wonderful care the last three weeks. I will send updates of our beach outing via my blackjack this coming week to show what mischief the twins and Macy get into..........Thanks again for everyone's prayers!

JB

Can somebody turn the light out?

Austin has been patiently waiting for his sissy to come home. He's taking a nap in the waiting room in this picture. Audrey has had three good days in a row. We are hoping to get her home soon.

JB

"On the mend"

Audrey has had a pretty good two day stretch. She is improving on both fronts. Her oxygen demands have been greatly reduced (she's on .25 lpm), and she has had no real seizure activity. Aunt Ally and Uncle Jeremy along with a tornado named Brady are visiting now so it's good to have family assisting. Austin and Mace are doing great and enjoying the pool almost everyday so we're trying to maintain normalcy. Overall, today is a good day.

JB

Parenting: Hang in, Hold on, Hug Tight


The words above are placed on a picture that we hang in our kitchen. I think we received it during one of the twins baby showers. I just thought it was cute at the time and didn't think too much about it until after everything that has happened to Audrey. We have been on such a roller coaster ride with Audrey that Shannon and I ask God, "why me and why Audrey?" I really don't know the answer, but why not us? We always thought this was a situation that happens to someone else and not you. You would kindly spend a brief moment emphathzing with that family or say a small prayer and then go about your day. Unfortunately, we're that family now and we must move forward no matter what happens.
I consider myself to be an extremely positive and optimistic person, but I have to tell you it's hard sometimes especially during days like today. Audrey is having seizures now more frequently, and they're trying to get them under control. However, the pneumonia is getting better. I was extremely frustrated the last couple of days because the hospital was not keeping us informed very well. I felt that we were in a stall pattern with very little information being passed. I think I have effectively fixed that now and feel fine with the plan of care. You will always be your child'd best advocate, and you should never put blind faith in a system like healthcare for your child. I feel confident that we have come to an understanding now.
Being a parent of a special needs child is probably the most difficult thing we have experienced. Recently, we met a parent of a special needs child. She was very nice and infomative, and she greeted us by stating, "welcome to the club". You know, I really don't want to be in this club. Nobody asked us if we wanted to join, and the membership dues suck. I'm rambling now, but if you haven't figured it out yet this blog is my therapy. Keep the prayers for Audrey coming, she's a fighter.



JB

A little stronger.

Audrey is making small improvements each day. They are trying to wean her oxygen demands. She has had a few seizures in the PICU, and they have adjusted her meds to counter them. It looks like she'll be here for several more days getting antibiotics. Keep the prayers coming.

JB

Making Progress

Audrey is improving. She's wearing a head turbin because she's getting a 24 hour EEG. She's going to be getting IV abx for the next week to ten days. She's definitely has my mom's stubborness. Keep her in your prayers.

JB

Hanging with Nemo

Audrey was extubated as planned around lunch time today. She's breathing much easier and being loved on by her Momma. We are very excited, but guarded because her condition can change quickly. They have ordered a 24 hour EEG because of a concern of possible seizure activity. We'll take the good with the bad, but today has been a good day.

JB

A different day.

Audrey is doing a little better today. She had a bronchoscopy performed earlier this morning, and they removed a bunch of the mucous plugging that was jamming her right lung. She certainly appears to be breathing easier on the ventilator. The plan is to extubate her later today if all goes well. They have changed her antibiotics to give her better coverage, and the nurses are doing a great job of caring for her. She is a fighter so please keep the prayers coming. We have so many people concerned for this little girl so I'll keep all the updates from this blog. Forgive us if we don't return calls, but our focus is on her right now.

What next?

Audrey is doing worse and had to be intubated yesterday. Her pneumonia on her right upper lobe has not gotten better, and she was really working to breath. They have her sedated while she is on the ventilator so she is breathing much easier. I really don't know what else to say........we are just numb and don't understand why this is happening to this precious little girl. Keep the prayers coming.

JB