Monday, June 21, 2010

Back in the hospital

Josh had an episode this afternoon while taking a nap. He was hooked up to his ventilator but his oxygen saturation levels dropped even on 4 liters of oxygen. And his carbon dioxide levels went up into the 60s. His temp got up to 100.3 today.

Josh has been on antibiotics for almost 3 weeks for a chronic sinus infection. So, we think there is something more going on.

The dr has decided to admit Josh to the hospital to investigate the cause of whatever infection or ???

Josh is upset about having to be here. But I just want them to figure this out so we can be done with antibiotics and extra breathing treatments.

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Sunday, June 20, 2010

Family visiting for father's day

My parents came from Odessa this week for Steffany's high school graduation. And we had Steff's baby, my grandson, Logan for the night. Hope everyone is having a great father's day! I'll try to update on Josh's condition soon.

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Tuesday, June 1, 2010

Pulmonary Clinic Visit & Holter Monitor

Today, we went to see Josh's pulmonologist at the pediatric specialty clinic.

Dr. Smith says Josh appears to have a chronic sinus infection. He suggested Josh use a Neti pot, or the like. And he showed us a video on youtube to demonstrate how you use it.
Check it out:



Dr. Smith also put Josh on an antibiotic for the next 21 days. And we've got Josh set up to do another sleep study in about a month, once he's finished the antibiotics.



Josh, as usual, saw the dietician and a representative from his new DME company, the Wave, and he did a pulmonary function test. Below is a video of Josh doing his PFT:



Here are the doctor orders from Dr. Smith, with all Josh's medications and vent/pacer settings:










After the doctor's visit, we decided to try and get Josh's blood drawn for the allergy panel Dr. Smith was wanting. We went to two different labs, but none of the techs could get a vein. They suggested we might try a heating pad to warm his arms and get the blood flowing better and try again another day.



So, then we went up to the cardiologist's office for our 1PM appointment to have a holter monitor placed. This is what a holter monitor looks like:





Josh will wear it all night and through school tomorrow. Then, we take it off, and mail it back to the office. They are looking to see if there are any pauses in his heart rate that could cause him to go into cardiac arrest or any other signs of heart troubles.

It's back to school for Josh tomorrow for his last FULL DAY of school. Thursday is early release and then it's summer vacation BABY!!!

Our next doctor's appointment after that is June 24th, when Josh is screened for tumors of neural crest origin. We don't think he has any, but he is required to be checked once a year for them anyway.

Discovery Documentary - Life or Death : Battling to Breathe

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