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Here I will try to be much more specific with Doug's medical history.
So much has transpired over the years that it difficult to remember it all. Come back often to see if I have remembered anything new.
Birth-3 years
Slight weight loss, diet change, problems with pain in ear canal and throat.
3-5 years...this is when I really started my research.
Large purplish mass on left side of tongue.
Mass would change shape and size from week to week.
Problems with swelling and bleeding.
Many trips to doctors, specialists.
Diagnosed with an 'hemangioma'.
Laser treatments in hospital and doctor's office.
First surgical excision at age 5.
Being told that this would go away with time.
5-7 years
Prednisone for swelling.
Xylocaine for pain.
Hospitalized numerous times for laser treatments. 'Hemangioma' continuing to enlarge then recede.
Main problem was getting son to doctor when it was in the worse stages.
In office laser almost every six months.
Diet drastically changed, if food not soft, he couldn't/wouldn't eat.
7-10 years
Still more laser therapy, Prednisone and Xylocaine.
Hospital stay number 6 came and went.
Frustration setting in, want answers not "wait and see".
Finally went over the 50lb(20kg) mark at age 10.
10-12 years
Slow growth period, mass stays more or less the same.
Still taking Prednisone and Xylocaine.
Learning more about birthmarks, in contact with numerous support groups and medical professionals.
No hospital stays, but in office laser treatments continue.
Unsure as to wether he has an 'hemangioma'.
Onset of puberty may bring changes to 'hemangioma'.
Still frustrated but learning more and more on my own.
The last six months...approaching age 13
More trouble, swelling, bleeding, pain.
Puberty has definately caused changes in condition.
Literally fell across the name of a specialist in home town. Sent email and got an appoinment within weeks.
Appointment with another otolaryngologist, plastic surgeon and a pediatrician.
Finally, a proper diagnosis of a vascular malformation.
Bloodwork ordered, along with suggestions for other tests and medications.
Researching sclerotherapy which may be his next surgery within the next few months.
At age 12, 75 lbs(32kg)
13 years, still 75 lbs(32kg)
On March 20, 2000 Doug had another surgery.
He had the main part of the vascular malformation "debulked", smaller areas were cauterized and surface spots were scraped off.
He also had sclerotherapy injections. Doug went into hospital at 11:30am and was in surgery by 3:00pm. He arrived in ICU at about 5:00pm.
I was amazed with how well he looked. There was no facial bruising, his tongue did not protrude out his mouth and he needed no assistance with breathing;
although, the swelling was very noticable. He stayed in ICU for 24 hours, and was then moved to a regular room, where he spent the next four days. The first few days he relied mainly
on his IV for nutrients. He was able to drink clear fluids and managed a Popsicle or two. Nearing the end of the week, Doug had progressed to soft foods
such as applesauce and yogurt. By the time he came home on March 25, he had been off the IV for 24 hours and was able to take enough fluids orally
to sustain himself.
Now, almost two weeks after surgery, Doug is doing surprisingly well. He is still eating soft foods, but his appetite has almost returned to normal.
The stitches have just about started to dissolve and the swelling has receded immensely. He still talks like he has a mouthful of marbles, but that too is improving.
The full results of the surgery will not be known for up to six months, as the sclerotherapy injections continue to have an effect.
On Monday, April 3, Doug will be returning to school. He may not be ready to play his clarinet, but I'm sure he can add and subtract!
We return to the specialist for the post-op appointment on April 18.
Next surgery date..October 12/01
I look back over the years and see much frustration and confusion. At the same time, I know all his doctors have his best interests at heart. They all did and continue to do, what they can with the information they have. I am extremely grateful to the following people/organizations for their input and support.
My family most of all for all their support and prayers.
Dr. R Burke, otolaryngologist
Dr. A Brothers, Canadian Vascular Birthmark Clinic
Dr. D McPhalen, pediatric plastic surgeon
Dr. V Kendrick, pediatrician
Dr. T Gilbertson, Associate Professor of Neuroscience at Louisiana State University. He has patiently answered my questions, sparked new ideas, and more importantly, given me his friendship.
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