Friday, August 31, 2012

Stressed

I have to admit I am stressed. I feel like things will get better if I can just get my little guy home. Why does this process of finally getting help have to take so long and be so difficult?

It began with my confidence being shot the first day at Almost Home Kids. The first day here, William's vent was switched out by the medical supplier because it wasn't making sound when it was alarming. (Even though it was working at the hospital.) I noticed that William was sweating and his breathing rate was way too high, I then called the hospital to verify his settings (and had them faxed over). The new vent was set up for him with different settings. The poor child was panting trying to take his own breaths when he wanted to.  I of course was completely stressed that A. This happened and B. I am the one who figured it out (I thought they were suppose to train me on the vent.)

William's trials off the vent are also not going as smoothly as they were in the PICU. Sometimes he does great with no problems other times he almost seems to panic and become overwhelmed by his secretions. I think the two main factors are timing and secretion management. 

Oh and last Saturday (notice the day of the week) we received a letter in the mail from our insurance stating that following "backup" equipment has been denied: ventilator, suction machine, oxygen, IV pole and feeding machine. First of all the use of the word "back-up" when referring to a "portable" vent and suction machine is just un-educated.   But, if they are going to use the term back-up, what is their back-up plan for the vent leak check, circuit changes or if something goes wrong; bag him and call 911? How am I suppose to take him to doctor appointments with out a portable suction machine? And are they suggesting someone in our house carries the vent, suction machine, oxygen concentrator, IV pole and feeding machine up and down the stairs everyday? Do they understand the function and medical necessity of all of these items? 

(some background info.: We previously had a portable suction machine, 2 IV poles and 2 feeding machines, but due the vent we needed to switch medical suppliers and of course now have to re-fight our previously won battles with insurance. Also note we bought a 2 story house prior to having children.)

On a more positive note, we had a very successful EI meeting resulting in more therapy for William. (Huge thanks to Meredith for all the advice!!) And most importantly William is well and continues to be a happy little boy! (He is especially happy if any kind of sports or Elmo is turned on the TV.)

Thursday, August 30, 2012

One step closer to home.

Approval for nursing came through today :)
William can come home after we complete a 48 hour training course and find nurses to staff our case.

Friday, August 24, 2012

Juliet Visits William

Nema spent the day with William and Juliet and I came by toward the end of the day! Juliet is always super excited to see William. In fact it is always a scene to get her to leave.

Monday, August 20, 2012

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!

Wednesday, August 15, 2012

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!

Monday, August 6, 2012

Surgery Tomorrow

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

Sunday, August 5, 2012

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.

Friday, August 3, 2012

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.  




Thursday, August 2, 2012

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.

Wednesday, August 1, 2012

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.