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H+12 and +13 combining posts and awesome nurses and a drug nightmare

Posted Jan 06 2010 12:24am

Hey everyone, I am sure you are getting sick of seeing my E-Mails in your inbox DAILY. The volume of news has subsided since discharge from the hospital. Of course sometimes we have news spikes in which I might switch back to daily delivery. I have an awesome newer nurse named Kelly who does days who will be doing up to 4 days a week, sunday monday tuesday and wednesday, someone else might get monday but probably not. Anyhow the big chunk of news came today around 5:00 PM when I received a phone call from Genentech, the makers of Pulmozyne A.K.A Dornase Alfa and they said my doctor submitted a statement of medical necessity with the diagnosis of “Acute Respiratory Failure” HELLO DOC!!! I am on this ventilator because it is Chronic and they said they will not fund it for that condition so that screws us up bad this coming month. Hopefully we can get that situation fixed.

By the way, I decided to clean up the orders list.

  • Tracheostomy <DONE NOV 12 (DROPPING TOMORROW)>
  • Cardiac Monitor <IN PROGRESS>
  • New Wheelchair <DONE> (DROPPING TOMORROW)
  • we are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.

  • Glasses <WAIT INSURANCE / MONEY>
  • Pacemaker / ICD <PENDING ORDER>
  • Spinal X-Ray Series <REORDERED FEB 2010>
  • Pulmonary Functions Test <REORDERED FEB 2010>
  • Moob ultrasound <REORDERED SEP 2010>
  • Muscle Biopsy – See if there is a muscular dystrophy or other disease directly affecting the muscle such as progressive rhabdmyolysis.<DROPPED>
  • Toxicology panels (drug & standard) – See if disease caused by toxic mutagenic agent (OP) <DROPPED
  • Voiding Cystourethrogram / Urodynamics – CMG <DROPPED>
  • ABGs draw (IP) <DONE>
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