Where There's A Will There's A Cure

For those you that follow our Blog, but are not on facebook, we have some announcements!

We have founded Where There's A Will There's A Cure!

Where There's A Will There's A Cure is an all volunteer not-for-profit 501(c)(3)
charitable organization and its purpose is to raise funds to find a cure for
Myotubular Myopathy (MTM).

We have a facebook page and are working toward launching our website very soon!!

And the Chicago Area Kickoff Party information is shown below!


Chicago Area Kickoff Party Fundraiser

• • Saturday, November 17, 2012
  • 7:00pm until 10:00pm in CST

• South Branch Tavern & Grille 100 South Wacker Drive Chicago, IL Event Hosted by University of Illinois Kappa Sigma Alumni $60 per person including three hours of open bar and appetizers. To get your tickets online please go to: http://southbranch.hastickets.com/eventinfo.aspx?eventId=429 For more info please contact Tom Kantas at thomaskantas@yahoo.com or at (708) 699-2469

Getting easier

William is doing well.  He is very happy to be at home with his family.

Thank you to everyone that supported us through the last couple of months.  We really appreciate it.


Here are some photos to illustrate the machines and other items we are using to keep William healthy.

Ventilator

Oxygen

Cough Assist 

Suction Machine

Humidity Trach Trial

Chest Therapy Vest

Pulse Ox

William!!!

Feeding Pump

Medical Suppies

Cabinet with more drawers

Medical Supplies

Cabinet

Best Buddies

Monthly Medical Supply Order

Here is a pic of William's monthly supplies (excluding O2 tanks). Thankfully our night nurse is an organizational specialist! (we really like her so far)

After 46 days, William is home!

Hand washing station

William will be coming home soon. Check out our new hand washing station and paper towel dispenser.

Frustrated

It is time to get William home. The family is getting frustrated with the current situation.

Hopefully we can bring him back home next week.

Hair Cut at AHK

Yesterday Uncle PJ and Aunt Megan visited William at Almost Home Kids and helped us give him a much needed hair cut!!

Things seem to be moving along. William is well, nursing has been approve, we continue to work on our training and the electrician installed the dedicated circuits in our house (both upstairs and down)! 

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.)

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.