Taylor: Back and forth

Sunday, October 11, 2009

Back and forth

happy to be out of bed

first time getting out of bed

visiting with the Young Women and Young Men in our ward

pulling faces with his best friend Nic

reaction to his new ipod touch from Lance

Happier boy

WOW! A lot has happened in the last five days. On the the 7th they moved him out of ICU then had to move him back the next day because his body could not tolerate any type of narcotic, it makes him sleep too deep. We had a little scare cause they couldn't get him to wake up for a long time. They actually had to give him a reversing agent a few times to wake him up, it reverses all the meds in his body. The poor thing can only have Tylenol and Toradol which is like ibuprofen but stronger. He's actually doing pretty well though. On a scale of 1-10 his pain level has been about a 5. Also he had a lot of fluid in his lungs and was getting to much C02. He had to wear a bi pap for two days straight now he only wears it when he's sleeping. On the 9th they got him out of bed and suspended in a sling for about 15 minutes, he said it felt good. They did the same thing on the 10th but not as long and he also sat in his chair for about 10 seconds a couple of times...sitting in his chair really hurt him. Today which is the 11th they are moving him back to the floor again and hopefully transferring to Shriner's Hospital tomorrow the 12...where we will be for about 4-5 days.

1 comment:

Steph said...: He's too cute! Glad things are going better, call me when you can. :) Love ya!; October 13, 2009 at 12:32 PM

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Taylor has Duchenne muscular dystrophy (DMD) it's a severe recessive X-linked form of muscular dystrophy characterized by rapid progression of muscle degeneration, eventually leading to loss of ambulation and death. This affliction affects one in 3500 males, making it the most prevalent of muscular dystrophies. In general, only males are afflicted, though females can be carriers. The disorder is caused by a mutation in the gene DMD, located in humans on the X chromosome (Xp21). The DMD gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane. Symptoms usually appear in male children before age 6 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from early teens to age mid 30s. There have been reports of DMD patients surviving past the age of 40 and even 50.