Update

William did great on the trial wean tonight! He couldn't maintain oxygen so they have him a noseband, but at least the lungs worked! Tomorrow: we practice at longer intervals and eating.

Update

I'm sorry for the missed calls/messages and for not updating sooner. It's been a busy day. William has been in a real struggle. We think we might be through the mucus plug, though. He's been on the bi-pap since 1:30 this morning and has done well. They have been slowly weaning him from the bi-pap today and plan to remove it for up to 30 minutes this evening when the doctor returns. He will definitely sleep with it tonight, but if the removal goes well we will work on permanent removal tomorrow. William is, of course, still extremely weak and is limp and lethargic. I do not know at what point they would expect to see his strength returning, but it's not started yet. The breathing treatments and CPT are still very taxing to him and it takes him a few hours to recover. Just as he recovers from one, it is time to start the next one. Thank you for the continued prayers and support. We've been we'll taken care of and well loved.

Ventilator

Wow.  It is easy to get lulled into a false sense of security when things have gone so well for William this past year.  What should've been simple just isn't.  Thursday morning William stopped breathing.  It was the scariest, most heart-wrenching thing I have ever experienced.  Sydnee was with us and I don't know that she'll ever truly recover from seeing her brother stop breathing and the emergency team rush in and take over.  They put him on a ventilator, but even then he continued to struggle.  A mucus plug had broken loose and plugged off his airway.  That happened 2 more times while on the ventilator, which was beyond scary.  I didn't even know a person could stop breathing while on a vent, but I guess when mucus plugs the airway it just can't press through.  Fortunately there was a medical team there to overcome it.  They had to hand bag him (Ambu bag?) until he was stable.  The third time they knocked out his vent, but after the plug was gone he seemed to do well with the bag, so they opted to put him on a bi-pap machine.  William made it through his last CPT without event. He is resting well on the bi-pap and his chest X-ray showed that his lung is nearly 1/2 cleared. Thank you for your continued prayers for him. Dr. says as long as mucus remains in the lung we run high risk of it blocking his breathing again. I was able to take a 10 minute power nap and feel refreshed.

Hospital

William aspirated on Sunday and is in the hospital on a 7-day course of IV antibiotics to clear his lungs. After that we'll re-evaluate where he is. Hopefully that will clear him up. It didn't last time, so they had to do a bronchioscopy, which will mean 10 days. 
He is already doing SO much better and looks like his old self again. He's already bored!  He has truly appreciated his friends visiting him. Thank you! It really brightens his day!

Fall Fun

It's been a busy and fun fall!  Lots of adjustments with a new baby around, loving on him and playing with him, new horses and training, and lots of school!  I took only the 5 boys for a full day of shopping and fitting for William's new orthotics and they were so helpful, precious, and well-behaved!  I am so proud of them!  They really rose to the occasion!  (Titus was in the office, too, but I was holding him!)

Fun at the zoo

Here is a picture of one of William's dear friends, Victoria.  She leads his horse during therapeutic riding class and is an all around blessing to William and our family!  He loves her dearly!  Of course, she's a lovely young lady, but the best part is she's just as lovely on the inside!