Thursday, October 30, 2008

Update

Ty made it from the bed to the chair this morning for the first time. It is the first time he has been off of his back since last Friday. He did well. Andy and I decided to give him a bath, but his pain is still there. Let's just say the bath didn't go over too well. Ty screamed so loud that I think the whole UT campus heard him. His hip is really sore, but I also think he is afraid to start moving it b/c he knows what it has felt like. PT will definitely be needed to help us get him moving. We are still waiting on that. I think they are trying to get the PICC line going first. The PICC line nurse was in around 2:15pm. She tried to get the PICC line in without Ty going under GA. She was able to get it into his vessel, but unable to move it along due to Ty's scar tissue from the 50 thousand (not really but it feels that way) IVs he has had in the past. He was extremely brave as she did her thing. He did cry, but never kicked or thrashed around. I can tell you now I would have been up off of that bed. Needless to say, it wiped him out and he is asleep now. So he is now headed back to the OR under anesthesia for them to put in the PICC line. Hopefully they will only gas him just a bit. It is a pretty quick procedure once it gets going. We are doing okay. I am exhausted from sitting here. Andy is doing okay, but he is antsy. We all know how he can't sit still for anything. We just want to come home- really, really bad. My poor little man is also allergic to the detergent that the hospital uses on their sheets. He has a rash on his back and butt. He has been scratching it quite a bit today so they are going to get him some cream. We have fixed that, and now he is laying on his fuzzy blanket from home. Still no BM. I am beginning to think it will be on my shift tonight after all. I will update more after the PICC line is in. All in all it has been an okay morning and afternoon.
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Ty's birthmark

Ty's birthmark
Ty before laser treatments

Tyler's Birthmark

A port wine stain (PWS) is a congenital birthmark that affects approximately 3 out of every 1,000 people. They are most commonly found on the face and neck, but they can be found elsewhere. The underlying dilated blood vessels cause the red/pink color of the PWS. When Ty gets upset or hot the blood flow to his face increases causing the birthmark to appear redder. When Ty is colder and the blood flows away from his face the PWS can appear invisible. If left untreated, the vessels may become enlarged and elevate the skin causing the surface to take on a cobble appearance. Sometimes the PWS can also develop into a deep purple color. Occassionally, the vessels can create overgrowth causing the area where the PWS is to become larger than normal.
PWS are present at birth and usually clearly visible. PWS grow with the person and never regress. The problems of PWS can now be treated by laser.
With different wavelengths a laser beam can be made to react upon materials of only certain colors and densities. The laser is tuned to only affect the darker more dense blood vessels deep in the skin that cause the birthmark, leaving the lighter less dense outer skin with minimal damage.Unfortunately, at this time, most people do not see complete removal of their birthmark by laser treatments. 10%-15% of those treated see 75%-100% fading, 70%-80% see 25%-75% fading, and 10%-15% see 0%-25% fading.
Treatments have a better chance of being effective when a person is still young. The skin is thinner and the mark is smaller. The skin has also not been exposed to the sun as much on a young infant or child. The sun thickens the skin and makes it darker, which in turn keeps the laser from penetrating the skin and hitting the vessels. Ty has had 15 treatments so far, beginning when he was 2 ½ months old. He will be 5 years old in Sept. 2008. He has had 80%-90% lightening in most areas, and almost complete clearing of the pws on his neck. The hardest areas to treat are the mask area around the eyes, and his lip area. Ty’s laser doctor is Dr. Roy Geronemus. He is the director of the Laser and Skin Surgery Center in New York, Ny. Ty goes to New York’s Eye and Ear Infirmiry for his laser treatments and eye surgeries/appointments for treatment under anesthesia. The healing time varies for Ty’s laser treatments. It is usually between 10-15 days, but we may see fading for up to a few months. There's no definitive number of treatments that Ty will need. So far we have always seen some improvement so we continue to get them. He will always need to maintain treatment in order to keep the PWS from getting darker again.
A PWS may also be a marker for associated syndromes such as Sturge Weber. Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.
Ty has had three MRIs to check if the vessels were involved in his brain. Brain involvement is one of the symptoms of SWS, and it can cause seizures. All MRIs were clean for vessels in the brain. Ty does have a malformation behind his eye in the area called the chrodial area, which is another marker for SWS. Since his birthmark covers his eyes, the blood vessels are causing the intraocular pressure in his eyes to elevate. Therefore, he has been diagnosed with glaucoma in both eyes. This malformation, along with his glaucoma, attribute to Ty’s diagnosis of SWS. One reason why his eyes stay so squinty and red all of the time is due to his glaucoma. Glaucoma can cause light sensitivity and watering of the eyes. It can also cause loss of vision and enlarged corneas. Ty has had 9 surgeries to control his glaucoma. Unfortunately, it can not be cured only controlled. He takes three different types of drops two times every day. He will most likely have frequent surgeries on his eyes for the rest of his life, or until a cure for glaucoma is found. In May of 2007, Ty developed a severe bacterial infection in his left eye. He was in the hospital for a week getting his eye injected with antibiotics. The result of this infection coupled with his severe glaucoma has left him blind in his left eye. This is also the reason for the droopiness and the physical appearance of his eye. He has since been able to see an ocularist. She formed a new partial prosthetic eye for him. You can not even tell that it isn't real. It is so cool. We are still learning day by day about PWS/SWS/Glaucoma. The hardest part about Ty's condition is not knowing what the future holds for him. We just take it day by day and rely on our faith in the Lord Jesus Christ to help us through.

Thank you for taking the time to learn a little about Ty and his condition. For more information, please visit the sources of the above information at http://www.sturge-weber.com/, http://www.birthmarks.com/, and http://www.laserskinsurgery.com/

What Ty's skin looks like after having a laser treatment

Tyler after 15 laser treatments

Sturge-Weber Syndrome Awareness