Sunday, November 30, 2014

2 weeks

It's hard to believe it's only been 2 weeks. Feels like 2 months...

Family Day

William is doing really well! Today we were allowed to take him into the playroom for a brief time of family worship. Last night they tried to leave his oxygen off but his sats dropped too low. His is being weaned off one of his medications over the next 3 days. In that time we need to get him eating consistently, moving more, and able to handle being off oxygen 24/7. Still praying...

Wednesday, November 26, 2014

Getting Better

William has been off of the bi-pap since 5:00 last night. He did great through the night, althought we almost put him back on several times. He has to maintain OS 90 or above to stay off. He's had a few brief dips, but has managed to pull back up pretty quickly. Lung is looking much better, but he still has a significant amount of atelectasis that must be completely cleared before release. Dr isn't keen on moving him out of ICU and said we will start discussing that when he's been off the breathing machine for a minimum if 72 hours. He's getting up to walk 4x a day for about 5 minutes each. We're trying to increase that time. Speech therapist will be in daily, as feeding is much better, but still having issues. Not with choking or gagging, just with eating in general.

Off Breathing Machine!

This momma is on night watch...watching this precious boy sleep. With no breathing machine! Just a little oxygen! He's been off the bi-pap this go around since 5:00pm and it appears he might be done with it! Praise the Lord!

Tuesday, November 25, 2014

Update

William is doing phenomenally well!! Off breathing machine for 3 hours this morning. Ate eggs, yogurt, and a grape without choking. Walked with PT about 20 steps using walker. Sat in chair playing the rest of the time. Talking, laughing, playing. Wonderful!
No X-ray today. We'll take one tomorrow and get a look at that lung. After his 4pm therapy, we'll take him off the breathing machine for as long as he can handle it. Don't know if that means through the night or not. I suspect they'll put him back on around 10 if he's still off of it.

Monday, November 24, 2014

A little food...

William was happy to have cookies from his sweet friend, Catherine, tonight! Even though he only took 4 or 5 small bites, this was his first food with no choking or gagging since the incident! I'm finally starting to relax!












He is thoroughly enjoying his visits from his sweet friends and it is so good to see him sitting up and playing!


video

Dr just came in to check William. We discussed how well he did this afternoon and evening, as well as treatment information for tomorrow (we'll be shooting for 2 - 2 1/2 hour increments later in the day). As he left he said, "And tonight I want YOU to get some sleep...you're starting to look pasty!"
LOL! 

Update

Praise the Lord, William is doing fantastic tonight! His last attempt off bi-pap was 2 hours and he's well over an hour with this one with no signs of distress. We think we may have the morning issues worked out for the regression. We'll know for sure tomorrow. So far, so good on the new medication. We were able to get ahold of the machine to assist with his cough, thanks to Reformation Heritage Fellowship and Mr. Timothy Norwood! Mommy truly feels that he's turning the corner and we are so appreciative of the milk deliveries  and extra care for our family! Love to all, Sarah


We are so thankful for all of you!  When William woke up from the ventilator, the first thing he wanted was his balloon, which had been taken home while he was sedated.  Our sweet friends answered the call, though, and he ended up with plenty!



Sunday, November 23, 2014

Update

At about noon, William had a miraculous turn of events. He was able to come off the bi-pap for about an hour and was even able to complete about 10 minutes of PT. Dr is encouraged by his sudden strength and we are trying to manage it diligently. We have not started the new medication yet, as Dr is going to see how long this new event holds up. William's right lower lobe is still heavily congested with no change from yesterday so if that doesn't start changing we'll have to start the meds anyway. Thank you all for the prayers and continued support!
Oh, and the other thing, his respiration rate has come down some (that's a good thing...it means he's not having to work so hard) and his heart rate is lower, too. His BP is still at the high side of normal, which is probably medicine related. The big thing is, he's been awake and coherent since noon, though he's starting to tire.




Saturday, November 22, 2014

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.

Friday, November 21, 2014

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.

Tuesday, November 18, 2014

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!



Monday, November 3, 2014

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!