Saturday, October 25, 2008

Pray for Ty

This is how our story starts. Yesterday morning Ty woke up complaining of right knee pain. I immediately thought it was growing pains so we gave him some Tylenol and then sent him to school. Around 9:00am his teacher, Mrs. Stephanie, called me to tell me that Ty was really complaining that his leg was hurting and he was crying. He was telling Mrs. Stephanie that he fell off of his bike on Thurs. afternoon while playing outside. I thought that maybe he had twisted his knee or even broken a bone so I went to pick him up and take him to Children's for x-rays. Mrs. Stephanie had to carry him to the car for me b/c I was carrying Evan, and Ty could not walk at all. Gramps met me at the ER and helped me get Ty in and settled. By this time he was screaming in pain. Every time he would bend his leg to 90 degrees or rotate it at all he would cry out. He was saying that his knee hurt and now his hip. The doctors took his blood and did leg x-rays. Ty's bloodwork came back fine and the x-rays showed no broken bones. The doctor just thought that he had a severe bruise from his fall. The doctor did mention that it could be something called toxic synovitis, but that usually the patient has a cold for a few days and runs a low grade fever with hip pain on one side. Ty only had the hip pain, but I should have known because Ty chooses to do things that are not by the text books. He gave Ty ibuprofen and sent us home telling us to have Ty rest and to see the doctor the next morning. So we get him home, carrying him to and from the car, house, etc. Anytime he is in another position other than flat on his back he is writhing in pain and screaming crying. Immediately I know that something just isn't right. I mean the kiddo has had his eyes cut on multiple times and never cried like this. His pain tolerance is just extremely high. I knew it wasn't a bruised hip. I just wasn't sure what we were dealing with. So after talking to a friend who has a friend in orthopedics, he suggested I take Ty back to Children's. I completely agreed, and I was so thankful to have my concerns affirmed. We get to the ER and they do more blood work. Ty's counts had tripled in the 3 hours that we had been home. He also started to run a fever. The diagnosis- Toxic synovitis. They did an ultrasound on his hip and saw fluid collected on it. So they admitted us last night and by 11:00pm we were in a room. They wanted us to talk to the orthopedic doctor this morning b/c he wanted to drain the fluid. There was a chance that it could be a bacterial infection. In fact, they were pretty sure that it was. So at 1:30pm this afternoon they drained the fluid. He got 5cc of pus out of the hip. The pus is definitely a bacterial infection. So Ty is on a strong IV antibiotic. They are sending off the bacteria to determine what kind we are dealing with. It is staph, but what kind they are not sure of yet. Most likely it is MRSA. So Ty will be at Children's Hosptial until at least the latter part of next week. When he does get to come home it will be with a pic line so that we can administer his antibiotics at home. He will have to be out of school for probably 3-4 weeks. He is in preschool, but he absolutely loves it and will be devastated to know he has to miss. Tonight with the fluid gone and the bacteria out of the hip, he was feeling a little better. He still cannot stand on his leg. It is extemely sore. The doc says that hopefully in the next day or two he will start getting back to his normal self.
That little guy has been through so much!! I know God has an awesome plan for him, and He is toughening him up for some serious battle time.
Please pray for us. That Ty would heal quickly, and that the stress of being in the hospital with two other children to care for would not overcome us. We have had lots of offers to help with Tristan and Evan. I thank each one of you who have offered, and may be taking you up on that offer. I am not really sure what we need at this point. We are taking it day by day. Just continue your prayers. We really feel them.
On a funny note, the nurse had given him some morphine right before the procedure this afternoon. It made Ty high as a kite. So when it was time to talk to the anesthesiologist about the procedure, she introduced herself. She was young, blonde, and attractive. So Ty is laying in his bed, and Andy and I are on his left side and the doc was on his right. He puts his hand to the right side of his mouth to hide his lips so only Andy and I could see him talk. All of the sudden he whispers really, really loudly. "SHE'S HOT!" I thought I would die. We all three just busted out laughing. It was so good for the soul. At least he has good taste. GO TY GO! I will keep you all posted as much as I can. Ty is in room 405 at Children's Hospital.

Love you all

4 comments:

Megan @ Hold it Up to the Light said...

Lifting up some BIG TIME prayers for Ty! What a sweet little dude! I LOVE the comment to the nurse...at least he still has his sense of humor. I am praying for you all!

AmyA said...

Ginger, Please let me know if there's anything I can do. You all are in our thoughts and prayers.
Love, Amy and John

lisamadcat said...

Hi Ginger. I'm a friend of Susan's. She's let me know of your situation and be assured I will be praying for you. Ty sounds like a fighter to me. You remember to take care of yourself too!

Lisa Cate

Lee Ann said...

Hey Ginger, We are praying for Ty and your family. Please let us know if we can do anything to help. Your family is wonderful. We love you all.

Lee Ann Hedrick

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