Joshua’s Blog

Joshua 1

Blog - nursing

Earlier this week, I was the nurse on duty with my son for the 3rd night in a row.  I am tired from working my full time job,  trying to take care of normal household chores and from helping out at our local food bank (my husband and I joined several of his Co-workers to volunteer on behalf of his employer).

Back when Josh first came home from the hospital with a trach and a ventilator,  he was 9. And we had no nurses.  Our insurance didn't cover much nursing and our family had no money to pay for them.  So,  I acted as his nurse for the first year after he was diagnosed with ROHHAD.

I am lucky now that we found a waiver program that allows him to have Texas Medicaid and a program called CCP. It pays for nursing. We now have up to 131 hours per week of nursing care for Josh.  That is the only way I was able to go back to school to officially become a licensed respiratory therapist and hold a job.

But, even though we have a great crew of nurses who usually fill all our nursing hours, this past week, we had a major vacancy.  Our nurse who has been with the longest (for several years) who was scheduled to cover those nights had to be away with her dear husband as he was admitted to the hospital with pneumonia.

Luckily, he recovered and we got our nurse back. Now, I'm the one battling a respiratory infection myself.  So glad my nurses are back to help.

Why does Josh need a nurse, you might ask.

Breathing:  His brain does not get the messages that his body needs more oxygen and to get rid of excess co2. You or I would feel like we need to take big breaths, but Josh has no idea. He gets no short of breath sensations. So co2 builds and builds until it makes him so drowsy he falls asleep and can't wake up anymore. We can't let that happen, so we always have to check how much co2 he has building up and make sure he breathes off the excess.  We use monitors, ventilators and breathing pacemakers for this.

Hormones:  Dehydration:
He also stopped producing hormones.  One very important hormone is vasopressin. Our bodies usually produce this when we get dried out and need to hold onto more fluids.  His body doesn't get the message to produce it, so he can sweat and urinate far too much. That depletes his body of electrolytes and causes a build up of salts.  That can be deadly, causing blood to thicken and have trouble moving through the body, and causing trouble with the body's electrical system that makes our hearts beat correctly. So, we have to watch his output of sweat and urine and replace the hormone vasopressin with a special nose spray version so he stays hydrated enough. And we tell him often to drink, drink, drink.

Hormones: Stress
The body usually produces something called cortisol when our bodies face stressors especially when we run fever or are sick.  Josh's brain doesn't get that message that he needs cortisol to let his body deal with stress, so we have to give him a medication- a dose of hydrocortisone to help provide anti-inflammatory relief for his body.  You would be surprised how a tiny dose of this medication makes a huge difference in Josh.

Hormones: growth
Josh also does not produce growth hormone. He has had to have injections (shots) 6 days a week for the last 9 years.  That is the only reason he has grown so tall, and allowed his abdomen to stretch out some, giving his lungs more room to breathe.  His endocrinologist  (doctor who specializes in hormones) believes growth hormone even in small doses now that Josh is so tall, is important to his heart health. So, Josh still gets his almost daily shots.

Josh also does not naturally produce testosterone that is important for boys as they grow into men. He gets a big injection with a much longer needle once a month of testosterone.  I definitely let his nurses handle that one!

Breathing treatments: IPV
Josh came down with swine flu and double pneumonia a few years ago. We were afraid we were going to lose him. He was so sick.  IPV treatments (a special device that nebulizer medicine and sends it into the lungs in little bursts) began for him when he was hospitalized. We believe they cleared his lungs and saved his life.  He was sent home with a home version of the IPV machine and takes treatments on it twice a day religiously to prevent further pneumonias.  It has worked well, keeping him out of the hospital for about 6 years now!

Our nursing care for Josh is oh, so important. And we pray we continue to be blessed with nursing care for him for many years to come.

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Colby’s Blog

colby 1Meet Colby, A beautiful strong young boy who was diagnosed with ROHHAD in April 2015.  Colby loves many things in life, including trains, dancing, singing, sports and the water!  If he could he would spend all day in the water.  Thankfully for now Colby's breathing difficulties do not affect him whilst awake so he is very active when he is able to be and he loves it.  Hopefully his ROHHAD will not decline and restrict Colby from doing what he loves the most; Sports.

Without medical research Colby may very well decline and have to be restricted in exercise in the future to keep him safe.  Thankfully for now that is not the case.

Recently Colby and his mum raised Awareness for ROHHAD in their home state of Pennsylvania USA and the state declared November 17th as their ROHHAD Awareness Day.

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Colby's mum will be blogging regularly about him and his life and battles with ROHHAD.  These will begin from next week.  In the meantime we simply must share another photo of this remarkable young boy.

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Jaxon’s Blog

Meet Jaxon jaxon 1

Jaxon is 5yrs old and lives in Canada with his mum and big sister. He is a massive Superhero fan ! The photo above was taken last week on his 5th birthday.  Jaxon has been diagnosed with ROHHAD and his mum Shanel will blog on the website from time to time to allow our followers and supporters an insight into Jaxon's ROHHAD Battle.

Shanel has been doing all she can to raise awareness in Canada and Jaxon was recently on the news (click the link below to view the video)


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Jaxon has like all the children battling ROHHAD spent a lot of time in hospital fighting for his life.

Keep following our Social Media pages and check in on the website from time to time to hear and learn more about Jaxon and how brave and strong he is.  Shanel will be blogging soon


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