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TrachKid Profile

Taylee spent the first 8 months of her life at Loyola University Medical Center (Ronald McDonald Children’s Hospital). Transported there from her hospital of birth Alexian Brothers Medical. Taylee was born July 19, 2001 weighing in at 2 pounds 12 oz. Taylee was born at 32 weeks of gestation! Taylee has come a long way. She has had several surgeries and will continue with them for years to come. She is an amazing child of strength and character. She is a true miracle and shows the strength of the lord through PRAYER.

Taylee has survived 2 cardiac arrests and several reactive airway attacks. She has been ventilator dependant since birth. Due to being ventilator dependant she now has chronic lung disease. She also survived a pulmonary hemorrhage of her lower right lung. At birth Taylee was diagnosed with several rare deformities of her airway and esophagus. She has had to go through many things to keep her alive. It has been one trade off for another. To try and list everything that is wrong would be several pages long. I myself have a hard time explaining it. Taylee, as of November 1st 2002, will be continuing her care at Children’s Memorial Medical Center in Chicago.

Taylee came home for the first time on March 19, 2002, but requires 24 home care. Home care as well is very costly. She has an entire hospital like setting here at home. Taylee has encountered many obstacles and has traveled a long medical journey of miracles. She has a long road to travel and through prayer God will carry her through her journey successfully.

The Power of prayer and God’s love is what keeps her here.

ABOUT TAYLEE

Born July 19, 2001

Born at Alexian Brothers Medical Center.

Transferred to Loyola University Medical Center July 21, 2001

Taylee stayed at Loyola for 8 months.

During her 8 months stay Taylee, had to endure several surgeries and complications due to her rare anatomy

She was diagnosed with T.E.F., E.A., and a laryngeal cleft.

Because of these conditions Taylee had other medical conditions arise

B.P.D. (Chronic Lung disease)

Respiratory arrest

Respiratory distress

Pulmonary hemorrhage of lower right lung

W.P.W (Wolf Parkinson’s White Syndrome)

Pseudomonas Pneumonia (recurrent)

Pyloric Narrowing

Metabolic acidosis And More.

Some of Taylee’s surgeries

Gastrostomy Tube, legation (temporary) of Fistula 7/22/01

Flex Bronchoscope 8/24/01, 9/24/01, and 10/10/01

R Thoracotomy with resection of TEF x2, legation and division of distal esophagus; R neck dissection and division of laryngeal cleft and cervical

esophagostomy 9/28/01

Rigid Bronchoscopes 8/24/01, 9/24/01, 10/10/01

Rigid Bronchoscope 10/19/01 Emergent to Pulmonary Hemorrhage

Tracheotomy 11/05/01

Pyloromyotomy and G-Tube revision 12/04/01

EMOTIONS AND FRUSTRATIONS

Being part of a family of a sick child is no cup of tea. It is a battle that is fought day in and out. Life cannot be replaced. Miracles need to be appreciated. Sometimes we feel like we lost part of the fight, but the battle will go on because as mom and dad we will never give up on our children. It is hard because aside from having a sick child insurance companies don’t let you enjoy what time you have what your child, they are figuring out ways to get out of bills or prolong them. They waste your precious time with phone calls and letters. They will help you until you get sick. Most of the programs out there can’t even help Taylee because all programs are based on income, not a child's needs medically.

Taylee is currently learning sign language. She did sign mommy first. She claps her hands and loves to play despite the tubes.

Taylee celebrated her first birthday July 19, 2002 and had a birthday party celebration here at home on July 20, 2002. Everyone came to celebrate and give thanks to God for the very miracle that Taylee is one.

Taylee had surgery July 8th, 2002 for tube placement in the ears at Loyola University (The Ronald McDonald Children’s Hospital).

Taylee still needs future surgeries to correct her anatomy and we are hoping to have these procedures done at Children’s Memorial Medical Center in Chicago.

I also have to take the time to give thanks to God, Crystal Lake Christian Church, friends, family, nurses, doctors, and all the other good Christians that have been there for us and prayed for Taylee. When mom and dad forgot why they where still able to go on these people helped us. God carried us.

Taylee & Justin

Update: Jan 24th 2003 - Taylee has been doing well, we have had a great week. There were crazy scary moments at the beginning of the month. Taylee coughed her trach out and in seconds her airway collapsed, had to force a new trach in and I caused some moderate bleeding so she got an expensive ride to the ER. She is laughing and playing like nothing ever happened. Taylee has the most forgiving nature and loves to love. She is trying to crawl but hasn't quit got it yet, but she keeps trying. Taylee's doctors are going to come up with a schedule of events that will have to take place for this springs surgeries. They are looking to fix the left larynx and upper airway wall. That will keep her in the ICU for and extended stay.

Update: March 4, 2003 - Well everyone, we have some new news for you. Taylee was diagnosed with something called V.A.T.E.R.S Syndrome. It was the cause of her birth defects. The good news is it is not genetic. It is a very rare Syndrome. She will have a Bronchoscope on April 4th, 2003.

Update, November 2003:  Taylee Is doing well. She went into the hospital on June 15, 2003, and returned home to us on Nov. 12, 2003. This was a long journey for her. She was ill in June with an upper respiratory infection. Taylee also had surgery this summer and it was successful. Now she is walking & signing more and more, She is a very Happy young toddler. Taylee and her big brother Justin love to dance, play and watch movies together. Justin is also learning how to play ice hockey, he loves it very much.

Update, June 2011: It has been many years since I have updated Taylee's profile. Mostley due to life challenges have a special needs child.. From 2003-2005 Taylee spent most of the time in an out of the hospital and was pretty sick.  In 2005 Taylee was in the hospital for 5 months and had her airway repaired in an 8 hour procedure. In May of 2007 Taylee was able to come off her vent and breath for herself on a high humitidy trach set up. In 2008 She took part in a swallow program at the Childrens Hospital of Wisconsin and has successfully learned how to swallow. In 2009 Taylee was able to learn how to talk with a Passy Valve.  Also in March 2009 Taylee was able to make her wish with "Make A Wish Foundation" she had a wonderful time at Disney and Give Kids The World Villiage.  She is still Trached and has not had her esophagus repaired but we shall see what th future holds. Taylee's Journey has been long an slow thus far. In april of this year Taylee had emergency surgery to have her gull bladder removed. She is currently stable and seems to be doing well. Everyday brings a new challange to our journey. Sometimes it even starts a new chapter in our book of life. Taylee loves to play with her big brother and wants to be just like him. She loves going to church, dancing (ballet & tap), Theraputic horseback riding, and playing with her friends. Some days are good and some days are harder than other. We take each day one at a time with a whole lot of faith.

Taylee Nicole Gulas & Family

Tngulasmedfund@comcast.net

• Gender: Female
• Demographic Region: North America
• Siblings: One
• Medical Conditions: Ventilator Dependent, Preemie, G-Tube, Bronchopulmonary dysplasia, Deformities of Airway & Esophagus, Wolf Parkinsons White Syndrome, VACTERLS Association

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