Friday, August 31, 2012


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.)

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