Home from the Hospital

We spent a week with Josh admitted to the hospital. So what did we learn?

Josh's cultures did not grow anything unusual or concerning.
Josh's lungs look ok- no pneumonia this time.
Josh does have polyps in his sinuses, but they are not too severe yet. One in his left cheek sinus is the worst and we should schedule a surgery to remove it before winter, but not now.
His trachea looks good, no breakdown or scar tissue buildup.
Josh has grown so much that it was time for a new trach tube size for him, so he now wears a Bivona 6.0 cuffed TTS (tight to shaft) trach.

Since we were scheduled to see an oncologist for screening for tumors of neural crest origin this week and couldn't make it due to the hospitalization, that doctor came to order the tests at the hospital.

We also saw the neurologist who we planned to see again next month. Dr. Tomasovic said he would dictate a note for his records and we could just see him again next year. He did not want to order any new medications at this time.

The cardiologist also came by and reviewed his tests and monitors. She said nothing looked alarming to her.

So we ran out of this to check or treat, so they let us go home

We are just glad to be back. Hopefully, whatever was causing him to de sat and have extra high co2 is going away on its own. If not, we will have to call and sere if the dr can figure anything else to try or test for.

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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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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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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.