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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Wednesday, May 20, 2009

What A Week!!!!

Thank Goodness this week is half over! This is and has been one very busy week, full of Pre-Op, surgeries and Post-Op appointments.

Before I go any further, I want to take a minute to Thank Timmy's Home Health Nurses. You know who you are! Thank You So Very Much!!!!! If it wasn't for this group of dedicated, caring and loving nurses, who were able to get together, plan a schedule, which would work for each of them, so that Timmy could have 24/7 nursing coverage for 2 nights. Floyd's surgery would not have been able to have been preformed.

And a Special Thank You to the nurse who worked overnight, for cleaning the downstairs bathroom, just to keep yourself busy, so that she could stay awake. Thank You!!! Oh and by the way..... The living room floor could use some spot cleaning or a nice shampooing..... Just Kidding! :0)

On Monday, my Mom and Floyd each had Pre-Op appointments at Duke Eye Center. Their eye surgeries were on Tuesday, with Dr. Natilie Afshari. With Post-Op appointments earlier this morning. My Mom had eye surgery to remove fibroidic tissue from her eye as well as some scar tissue. The Doctor placed a piece of amniotic tissue over her cornea along with a contact lens, which is to act like a bandage during healing and to keep the cornea from drying out. Once her cornea has had some time to heal, the Doctor will decide if there is anything else that she can do to help improve my Mom's vision, like a corneal transplant.

Floyd had cataract removal surgery on his right eye. The surgery was a BIG SUCCESS!!! Floyd is able to see clearly now and being that the Doctor was able to place most of his eye glasses prescription into the lens that she implanted during Floyd's cataract removal surgery, Floyd no longer has to wear glasses. The Doctor feels that the most he will need is a contact lens for his left eye to help correct the vision in that eye and possibly some reading glasses. As the eye heals, we will know for sure just how much Floyd's eye sight will improve and how much his vision will need to be corrected.

Myself, Floyd and my Mom all have follow up appointments with Dr. Afshari, on May 27th. starting at 11:00am.

Tomorrow we return yet again to Duke Eye Center, so that Timmy can have his Pre-Op appointment, with surgery scheduled to replace his eye conformers on Friday morning with Dr. Richard.

We also have the date of Timmy's "hopefully" last surgery that will be needed before he can have his trach removed. On June 4th. Timmy will have surgery with Dr. Zdanski, at which time Dr. Z will laser Timmy's airway to remove scar tissue, which was most likely caused by Timmy's frequent extubations and intubations, while he was in the NICU. Following this surgery Timmy will be required to stay at least 1 night for observations.

On June 11th. only 1 week post surgery, Timmy will be admitted to UNC. At which time Dr. Z will attempt to remove Timmy's trach. This stay will be a minimum of at least 3 days, but "could" be as long as a couple of weeks. No matter at the length of stay, we are sooo very hopeful that the airway surgery will be a success, so that Timmy will do well with the trach removal process. This is the very first time in 5 years that we have been this close to Timmy having the possibility and chance to "try" to have his trach removed. We are all so excited, hopeful, but yet scared all at the same time.

If the lasering of the airway doesn't work, there is one other surgery that "could" be preformed. The Doctor would take a rib from Timmy and use it to build Timmy a larger and more firm airway. But the stress of this surgery along with the extreme pain, we would have to do some long consideration before consenting to let Timmy undergo this last ditch surgery.

We choose to stay positive that the lasering will be a success and that Timmy WILL be able to have his trach removed without any further surgeries. Because Timmy is really looking forward to that loooong swim in a pool and a trip to the beach. He has been practicing his floating and splashing, during his bath time at night.

So if anyone is wanting to purchase any stock. I'm off to buy some Quilted Charmin and Preparation-H!!!! After this week and the weeks to come, I/We are definately gonna need it!

1 comment:

Anonymous said...

Bless your heart! I thought I had a busy life until I read about yours! Hope you and your mom and Floyd (your hubby, I presume) all do well with your various dr. appointments. Will be thinking of you and Timmy tomorrow and praying that his surgery goes well. Already praying about the upcoming trach surgery. Keep me posted, please. Love, hugs and prayers.