Monday, October 27, 2008

Still hangin' in there

Ty is still hanging in there. I need to update my original diagnosis from the last post. Ty's toxic synovitis (ts) developed into septic arthritis of the hip. This occurs when a bacterial infection collects in the hip. This is much more serious than the ts. TS is just a little inflammation of the hip joint, which goes away in 3-7 days. It can be treated with basic ibuprofen.



We talked with the doctor today, and the infection is indeed staph. What type of staph we do not know yet. We will probably know that tomorrow. The doctors have told us that hopefully by late today or tomorrow his pain will start to lessen some. His body is slowly fighting its way back to normal. Ty had a bad night with pain last night. His leg continues to cause him unbearable, and unbelievable amounts of pain. He is on morphine and tordol, a iv ibuprofen. The plus side to these are that they make him feel better, almost too good. The down side is he hasn't been resting well b/c the drugs are making him high as a kite. He just talks, and talks and talks. You would really think he was just fine if you didn't know any better. Last night though we let the medicine wear off too much before he received another dosage. This caused his pain to be unreal. At 2:00am this morning I was at my wits end. While waiting for the drugs to kick in Ty turns to me and says, "Mommy, I love you. I wish you could be in the hosipital" I about lost it. I try not to cry in front of him though. Gotta keep his spirits up. I have been telling him over and over how I wanted to be in his bed taking the pain for him. I am sure that is what he meant when he said he wished I could be in the hospital. This child is a lesson in preserverance for me and the rest of my family. Oh how my God uses situations to glorify His name!!!

He is resting as I type this. I think he is so exhausted that the sleep has started to overcome the power of the drugs. This is good b/c he so needs his rest. They checked his blood count this morning and we are waiting for the results. They want to see it either remain the same or decrease. The good thing is that his fever has gone down. I pray that this is a sign he is on the mend. The blood counts will tell us for sure. If the counts are looking like they should, then hopefully we will get Ty's pic line in in the next couple of days. Then once he is stable he can come home. He will be on iv antibiotics at home for some time, possibly weeks. He has yet to move from the bed. So my next prayer request is for the pain to go away enough so that he can move out of the bed. I am praying that he will not have to undergo physical therapy for this hip. That is a question that I have for the orthopedic doc when I see him today. All in all the summary seems to be improvement. Slow and steady, but it is coming. Please continue to pray. Love ya lots, until next time....
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2 comments:

Phil and Amy said...

Dear Ginger & family - we are thinking and praying for you constantly. We know you would bear this for Ty if it were possible. We pray for the doctors and nurses as they care for Ty and also for you guys as you hang in there with him. We love you and hope and pray for a sunnier day tomorrow. Love, Phil & Amy

October 27, 2008 at 8:26 PM
Megan @ Hold it Up to the Light said...

We are keeping Ty (and you!) in our prayers! Poor little guy....he has really had some trials in his life! Please keep us posted....it is great to know what you need specific prayers for!

October 27, 2008 at 9:42 PM

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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