William is being transfered

Will is on his way to Almost Home. He will be at Almost Home for 1 - 2 months.

Checking Out Tomorrow

William is set to be discharged tomorrow. He will be going to Almost Home Kids in Naperville, until we get all of our training completed and our in-home nursing in place. One more step towards bringing William home! 

In the picture below, William is sitting in his brand new cool orange wheelchair and he is off the ventilator. He is on what is called a trach collar which still gives him some O2. He is currently at 45 minutes 4 times a day and is doing great!

PICU Update

I thought I would give a little update on William.  He is still in the PICU.  Recently he has had some problems with his feedings. But, hopefully we can work those out with a little rescheduling and more venting (letting air escape through his g-tube) He has been getting trials off the ventilator. We have put him on progression schedule. Currently he gets 15 minutes off 4 times a day. The plan is to do this for 3 days and then progress to 30 minutes 4 times a day and so on. So far we are on day 2 and he is doing great. My hope for William is that we can get him back to his baseline pre-surgery and just use the vent while he is sleeping. Yesterday, I got him into his wheelchair. He sat up, played with his iPad and watched Elmo on TV! He looked happier than I had seen him in awhile! 

It is possible, if everything goes well, that he may be discharged some time next week. However since the trach and vent is new, he will be going to a transitional place until we can get all of our training done and nursing in place. William's transitional home is going to be Almost Home Kids in Naperville. I truly wish I could just take him home. I just want my little man, healthy, happy and home!

Post-Surgery Smiles

William is well and is back to giving kisses!

Surgery Tomorrow

William's tracheotomy surgery is set for 7:30 am tomorrow. Please keep him in your prayers.

Day 10

The lungs are much better. The plan is to have the tracheotomy on Tuesday. He will need to to monitored post surgery, and then must be transitioned to his home vent while in the hospital. He will be monitored on the vent for a minimum seven days.

Our home is being inspected for proper power requirements for the new machines.

William is happy and will be even happier once they are able to take the tube out of his mouth.

From Bad to Worse 08-03-2012

Yesterday we thought we saw some signs of progress.  All hopes for continued progress were dashed this morning  as William's other lung collapsed.  To be specific atelectasis set in in both lungs causing extreme difficulty breathing and more mucus.  William was placed on Bi-PAP.  He hates the Bi-PAP and fought it all morning.  His secretions did not improve.

Upon consultations with William's team of doctors, it was determined that the best method to keep William alive was to re-intubate him.  From our prospective he had lost all ability to clear his secretions and a mucus plug was imminent.  

He will be trached next week and given a permanent ventilator.

The good news is that William may be more comfortable with the vent and the trach will allow better access to suction.  

08-02-2012

William had a tough night, but he seems to be improving. Post extubation he had massive amounts of secretions. During the night he was able to make weak coughs to fend off mucus plugs.

This morning we were told he he had a partially collapsed lung. Late this afternoon William became more responsive and played with mom. There is still a long way to go, but it was reassuring to see him smile.

08-01-2012

William is having another tough day.

After much deliberation, all of the physicians agreed that an attempt should be made to take Will off of the vent.

He is struggling. His secretions have increased causing him more breathing difficulty.

For the first time, I am freaking out more than Mel.