This is just awesome. To speak with other mom's and get to know them and to be able to talk about our children is just amazing. Here is an email Haven received from Vanessa Wooten about her amazing son - Joshua Wooten:
Hi Haven,
Your birthday - January 26th - is also my birthday. But I am a bit older than you. I was born January 26, 1973.
My son, Joshua - who is 12 - also has ROHHAD. But he does not (so far) have a tumor. He is checked for them each year now. He seemed completely normal (as far as we could tell) until he was 8 and a half years old. That is when he started being extra sleepy each day after school. He didn't feel like he could keep his eyes open - even enough to eat dinner or go to church (which he loved to do). Then he got a real high fever and collapsed when he got out of the bathtub (I had made him take a bath to try to help wake him up).We took Josh to an emergency clinic. The doctor there found out he didn't have enough oxygen in his blood. They put a mask on his face to help give him more oxygen and called an ambulance to take him to the hospital.
At the hospital, Josh stopped breathing (not right away - but hours after he got there). It happened suddenly and doctors tried to get a tube to go in his mouth and down his throat so a machine could breathe for him. They had a really hard time placing the tube and Josh nearly died. But finally, they got it right and saved him. He spent the next 2 weeks in the hospital. The doctors didn't know what had made him stop breathing - even after all those days in the hospital. They gave him steroids in an IV and he got stronger and they finally let him go home. (Alot of other stuff happened too - like he had stopped being able to move or feel his left arm and leg for a while and he also had a seizure - but those things got better along with the steroids.)
The doctors thought he was all better by a few months later. But he started having troubles again and had to go in another hospital for more tests and to have a machine breathe for him again. This time, he spent 6 weeks in the hospital. But before he got out, doctors decided it was best to put a tube in his throat that would more easily hook up to the breathing machine (ventilator). And they had him hook up to it everytime he was going to go to sleep (to make sure he didn't stop breathing again). That tube is called a trach because it goes through his neck into a place called the trachea (where air goes up and down from your mouth and nose to your lungs).
Now, Joshua also has some trouble with how his body deals with fluids. He also has to take growth hormones (with shots) 6 days a week. And he takes a small steroid pill every day. He has a hearing loss in both ears (only high pitch sounds - like s, th, ch sounds) and he wears hearing aids in both ears to school. And he has a special nurse who comes on the bus and rides with him to school. She stays with him all day and rides the bus back home with him, too. That is partly because Josh has to take his breathing machine with him and hook up almost all day long (doctors say he has to - even though he seems to be able to breathe ok on his own most of the time). His nurse helps him suction out stuff he might cough up in his trach tube and help him get around with his ventilator. She also helps remind him to drink because he gets so dried out but doesn't realize it. And, she checks his temperature and blood oxygen level and carbon dioxide levels in his blood to help make adjustments to his ventilator (how many breaths it gives him every minute - that kind of thing).
Josh sees all kinds of doctors, too. He has a regular pediatrician close to the house. He sees a lung doctor (pulmonologist), a heart doctor (cardiologist), a brain doctor (neurologist), a hormone specialist doctor (endocrinologist), and a cancer doctor (oncologist) who checks him for tumors like the one you have. All those doctors are in our area - but about a 30-45 minute drive across San Antonio from us. He has also gone to see a doctor in Chicago who has seen other kids with ROHHAD and a similar disorder called CCHS. We have only seen her (Dr. Debra Weese-Mayer) once. Then, we found out about some other doctors who might be able to help us in Houston (they are looking into the cause of the disorder and they also do some work putting a device inside the chest to help people breathe bigger without a ventilator). And Josh has even gone for a special MRI study at UCLA.
Well, I'd love to hear more about you and what you think about all your doctors and tests and all. I know you have been through a lot in the last couple of years.
Vanessa
PS You can see lots of pictures of us and read about us on several web pages:
http://www.vwootenworld.blogspot.com/
http://www.myspace.com/Vanessa1973
are just a couple of them
Welcome! This site is updated with Haven's friends that we meet through our illnesses. These are highlights of some of the bravest children I know!
The doctors in Houston did not find the cause of ROHHAD, but they did do an operation on Josh to put in the devices to help Josh breathe without his ventilator. That device is called a diaphragmatic (or breathing) pacemaker. Josh is healing up good first before he can use the new device to breathe. Until then, he still hooks up to his ventilator to help him breathe better.
ReplyDeleteJosh must use the following cautions while on the ventilator.
ReplyDelete1. He must visit the doctors for checkups on a regular basis.
2. He needs to be on the ventilator at all times especially when he sleeps at night.
3. A private home health care nurse must watch and monitor him closely when he goes to school. Her duties include suctioning out stuff that he might cough up in his tracheostomy tube, helping him get around with the ventilator when he goes to class, checking his vital signs to make any adjustments to his ventilator, and reminding him to drink fluids when he gets dehydrated.
4. He must take steroids and receive growth hormone shots every day.
5. He needs to wear hearing aids in both ears because his illness left him partially hearing-impaired on both sides. He is sensitive to any loud noises that may make him permanently deaf on both sides.
6. He cannot get his tracheostomy tube wet. That means he cannot swim or take baths or showers unless the water is less than halfway full.
7. If anything goes wrong with the ventilator settings or if he stops breathing even with the ventilator, His nurse or any members of his family must call 911 or an ambulance right away.
8. He must be very careful when playing outside. He cannot run while on the ventilator, He must avoid doing any hard-labored chores that may cause him to stop breathing even with the ventilator.
9. He cannot be off the ventilator for long periods of time because without it, he might stop breathing at any time.
10. He must always take the ventilator with him whenever he goes anywhere including school or doctor's appointments.
Everyone thought Josh was perfectly healthy and normal when he was younger.
ReplyDeleteHis first problems were:
sweating more than normal - which he's done since he was a baby,
failing hearing screenings - as early as 3 years of age (they said the trouble was in the high frequencies and he can hear most normal speech just fine),
and a learning disability (discovered in 1st grade when he could not seem to grasp basic math and reading).
Otherwise, Josh was active, rarely sick and usually quite happy.
It wasn't until he was 8-and-a-half that we discovered there was something seriously wrong with him. He'd had a throat infection and finished a course of antibiotics. He would get up and go to school ok, but come home and fall asleep on the couch and not be able to wake back up and stay awake. He was missing out on playing with his friends, going to a favorite church function, and he wasn't eating much. This lasted a few days. I thought he was just still recovering from that throat infection. But after having a bath to try to wake him enough to finish his overdue homework, still wrapped in a bath towel, he collapsed in front of me.
I got him to his bed, realized he was very hot, took his temperature and found he had a fever of 103. I gave him motrin, got him dressed and took him to a minor emergency clinic - thinking he likely needed more antibiotics. Instead, the doctor found his blood oxygen level was very dangerously low (50 percent and it should be 97-100 percent). They called an ambulance that rushed him to the hospital. The next morning, he went into respiratory failure and had to be resuscitated 5 times before getting him onto a ventilator. But they finally got it right and saved him. He spent the next 2 weeks in the ICU. While there, he lost feeling and movement in his left side and had a seizure. But powerful steroids and lots of IV's seemed to work and he got better soon.
Doctors did not find the real cause of his problems until months later and another hospitalization. He relapsed while at a Sunday Church Service with the rest of the family. Again he was rushed back to the hospital. After several more tests, doctors found the diagnosis they were looking for. His diagnosis was a combination of a few things: central hypoventilation (a part of the brain causes the body not to ventilate properly).... because he did not have that particular problem from birth, they called it Late-Onset. But his body was not producing cortisol as it should either. An endocrinologist said he also had hypothalamic dysfunction. After doing research about his condition, doctors made a decision which changed everything.
One of the doctors came out and talked to me privately. she said that Josh will not be able to breathe on his own ever again. That meant Josh will need to be hooked up to a ventilator 24 hours a day. But in order to do that, he had to have a tracheostomy tube inserted in his windpipe. To do so, doctors had to cut a small hole in his throat before the tube can be fitted in place.