Thursday, October 30, 2008

STRENGTH

Last night was my night to stay at home with the other two kiddos and sleep in my own bed. Oh how I hate to leave my Ty-Ty, but how I long for my bed and my other babies. I have learned to treasure the time that I spend with them. Not that I don't already, but I think sometimes I take it for granted that I am able to be with them so much. It has made me sad not to have mommy routine this week.
On to other things though b/c I digress. Dr. Blackmon (Ty's ped.) and Dr. Crawford (Ty's ortho.) came in to talk to Andy this morning. Praise the Lord that Ty's fever went down after a dose of Tylenol last night, and did not return. I have no doubt that this was the power of many prayers being lifted up on his behalf. The docs stated that Ty's blood work looks real good, and that our next goal is to get Ty to have a BM. He has not gone since last Thursday. AHHHHH! Granted he has not eaten, but still I can only imagine. So Dr. Greg told Andy that he would have to give Ty an enema if he had not gone today. He also told Andy not to worry that he would make sure that happened on my shift. Okay, Greg if you read this... Not so funny;) What has to be done must be done though. The non-glorious side of motherhood.

The next step is physical therapy to get him up and moving. Also he is slowly being weaned from the morphine. He is rather cranky at times, but I know I would be too. He can either be high as a kite, or hateful as a bear. It just depends on the level of drugs in his system at the time. Andy said he had a decent night. The nurses had to change his IV. It did really well though. It lasted in his left hand from last Friday until last night- almost a whole week. They moved it to the right hand last night. We are praying to contine to see good results and soon his PICC line will go in. It looks like he will probably miss the Trunk-or-Treat festivities that our church is sponsoring, but I will be sure to load him up with his favorite M&M's- or wim wims as he would call them when he was little. He is a chocolate lover just like his momma! He and Tristan are suppossed to be Lucy and Peter from Narnia. How ironic that Ty is Peter. I know this child is so strong! It reminds me of a couple of verses

Psalm 18:32-33

It is God who arms me with strength, And makes my way perfect. He makes my feet like the feet of deer, And sets me on my high places.
I may just bring his costume to the hospital. He has a toy sword, and has been dying to play with it since I bought it.
We continue to covet your prayers. It is so hard to see your child in this situation. I also know this promise is true from Romans 5:3-4

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.
Through all of these trials that Ty endures, I will hold on to this promise. For it is exactly that, a promise. God's word does not lie!!! I am honored that HE is shaping our character through it all. I am anxious to see what the Lord has in store for Ty. It is something really big- I have no doubt about it. I will continue to update the blog often as Ty is recooperating. I am staying at home for a bit with Evan this morning. My mom will then come to watch him while I go to the hospital for my shift tonight. It looks as though we might be on the tail end of things now. I pray that we are. I am grateful for a couch to lay on in the hospital, but it sure isn't like my sleep number bed.
By the way, the "hot" anesthesiologist came in to check on him yesterday. He was sleeping though. She was so sweet to do that. Children's has been great. I meant to put this in my last post, but forgot. Ty's bottom tooth was loose before his first surgery. The docs pulled it out while he was under GA, and then they put it in a little bowl and taped four one dollar bills to the top. They brought it to us, and told us that the tooth fairy had visited in the operating room. Ty thought that was so cool. I just thought it was a great thing to do. He lost his first bottom tooth last week. Here he is from last week after losing that first tooth. I love this picture.
I just got a call from Andy while typing this update. Ty is sitting in the chair! WOO HOO!!! Keep those prayers coming.


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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