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.

Published with Blogger-droid v1.3.5

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.

Kicking off Summer

Joshua still seems to be trying to fully recover after his bout with swine flu and double pneumonia back in late January/early February. He had a cold on top of that. So, he has had some pretty rough times the last couple of weeks.

He is doing a special kind of breathing treatment called IPV (Intrapulmonary percussive ventilator). It “shoots” moistened air/medication into the lungs to help break up mucus. It works really well. Josh takes these breathing treatments at least three times a day.

Josh is graduating 6^th grade and will be moving up to junior high school in the fall. We have his graduation ceremony tonight (May 27, 2010) at the high school where his sister used to attend. She will be graduating high school soon. Her ceremony is June 23^rd. We are proud of both Josh and Steffany for their academic accomplishments. We also remember when they were both just starting school. It seems like it was just yesterday (well, maybe a little while before yesterday – but still hard to believe it’s been this many years that have passed already).

JOSH in PRE-Kindergarten

Josh about to graduate 6th grade

Steff graduating Kindergarten

Steff about to graduate high school

Our summer will be busy with visits to a number of specialists (for Josh). He goes to see both his pulmonologist (lung doctor) and to have a heart holter monitor placed on Tuesday, June 1^st.

June 24^th, he goes to a new oncologist (cancer doctor). Josh has to be screened annually for tumors of neural crest origin, because those have been seen in several patients with hypoventilation syndrome. Josh has never been found to have any of these tumors, but he’s still supposed to go get checked out for them just in case.

July 14^th, Josh sees his endocrinologist’s assistant. This will be the first visit to that office since he started getting testosterone injections (begun in early May – and he gets them once every four weeks). That specialist keeps track of sodium levels, growth hormone and testosterone levels, and pays close attention to Josh’s height and weight.

A week later, July 21st, Josh goes back to see his neurologist again. It has been a little while since Josh was seen by the neurologist, but we feel it is important to touch base with Dr. T. since he so closely monitors issues in the brain. Josh has some significant delays in his learning. We think it is due to possibly long periods of time that Josh went without enough oxygen to his brain. We hope his brain injury isn’t so significant that he can’t recover.

Then, unless there are any scary results from Josh’s holter monitoring back in early June, he will see the cardiologist (heart doctor) August 3^rd. The holter is being done primarily to check if there are any significant pauses in Josh’s heart rate – because if they are long enough pauses, they could send him into cardiac arrest. If there are any long enough pauses noted, he will need a cardiac (heart) pacemaker to be implanted. But the doctor also monitors him because he has so many periods where his heart will race and episodes where his heart slows way down. We think, like most of the other weird things his body does, it is just not reading accurately

what is going on in him. And his body reacts like something is happening when it is not.

Josh is also looking forward to some recreational opportunities this summer. He really wanted to join a sport camp at school. But since we are not sure if that would be appropriate with his pacemakers and disorder, he are opting instead for a church camp (kind of like a vacation bible school thing with a sports theme). He will participate (as long as he’s healthy enough at the time) June 9^th-11^th in a basketball themed “camp” at Everyday Christian Church. We went yesterday (May 26^th) and turned in his registration form. And Josh is really looking forward to participating.

Other than that, we are working hard, still have our house on the market – though we are considering just taking it off and staying put – and trying to keep everybody’s cars/vans/trucks running. And of course, every chance we get to spoil that new grandbaby, we do that too!

Logan is 4 months old now!

Happy beginning of summer everyone!