Also, because Taylor is not keeping food down, she runs the risk of aspirating when she throws up. It was recommended again that we re-consider the G-Tube surgery. She is still considered a high risk case, but Duke has agreed to do the surgery. Jeff and I have prayed about this decision and we are going to go through with the surgery. We are kind of stuck between a rock and a hard place because there are risks if we don't have the surgery, as well as if we do. The doctors here feel Taylor is stable and is strong enough to endure the surgery. However, we are still a little nervous. As of right now, we still don't have the exact date of the surgery. However, we are scheduled to leave Pitt late this week and have the surgery some time early next week. Then we will be coming back to Pitt for a few more days of rehab.
Some good news, is that our wonderful case worker has found us a physical therapist that will come to our house to work with Taylor. She lives in our area and is a wonderful person. We also found out that Taylor should qualify for Cap/C. This stands for Community Alternatives Program for Children. It is a type of Medicaid that will help cover cost for in-home nursing and medications. This is all dependant upon the assessment they do of Taylor when we take her home. Then, we have to wait 30 to 45 days while they determine how much help she can get. Our case worker said we should qualify no problem because Taylor has already been deemed disabled. Hopefully, Taylor will qualify for Cap/C because our private insurance will not help cover the cost for in-home nursing. I guess having a severe heart, brain damage, and on 10 different medications isn't enough to qualify for a little help.......go figure.....
We got to bring Taylor home for the day again on Sunday. This time, it went much better!!! She didn't throw up at all and the boys were much better with her. The five of us sat down for dinner together for the first time in 13 weeks. As we were clearing the table we noticed Tate was pretty much lying on top of Taylor trying to kiss her. How SWEET and SCARY at the same time. It is still going to be a huge transition when we take her home for good, but boy are we ready for that day!!! Well, that's about it. We should have an eventful next 2 weeks. I will try and keep you more updated with the surgery. Keep praying for baby girl! We love and appreciate you always!
Tammy
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God Bless the little things...
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6 comments:
Dearest Tammy, Taylor and gang,
Looks like you'll be exiting Pitt just as we are entering! But during my convalescence I'm hoping to get back to see you guys. I am praying fervently about Taylor's gastric problems...and praising God that the bureaucracy seems to be waking up and preparing to help you! It won't be long before she's home with you all, what a triumphant day! We have to thank the Lord that He has greatly used Taylor to bring many of His people together in prayer for her. We sure miss you at school, and you're always on our hearts! Hope to see you REAL SOON!
Love and blessings in the Name of the Lord,
Anne Chick and family
Hi Tammy and Family...
Thank you for the update on what is going on, we check every day to see if there is any news, but completley understand that you have a million other things going on. The surgery for little Taylor has been planned long before it actually was decided to be done. The Lord knew, and had a plan for Taylor, and still HAS a plan for little Taylor. She has brought so much hope and inspiration to all of our lives. She has truly shown waht perserverance is...I know that things are going to be okay. Along with the other doctors that will be attending Taylor's surgery, so will the Lord, and ALL of us in mind, spirit, and prayer. I keep thinking of what you had said about the other family you met that has a daughter with the same condition as Taylor. She is now fine, and I know in my heart that Taylor will also be fine in time. As always, praying and thinking of you...XOXOXO
Love,
The Buckley Family
I am so glad Taylor is going to have the G button placed... I know it is a scary thing,but I think it is what she needs for her continued healing. God will watch after her like HE has done for 13 weeks. Praying for you all. I am so happy you have such a great caseworker, who sounds like she is a very good advocate for your family.. love you aunt cheryl and family
Whitehead Family, As always I continue daily to keep you all in my prayers. Check in daily for updates and pray things will soon take an upward swing. Your faith in the Lord will see you thru. Pam Keil, Jacksonville, NC
Dear Jeff and Tammy,
We pray for a safe and successful surgery for Taylor. It would be wonderful if you can get some in-home help for Taylor when she goes home since you have two little boys that need you too. Much love to all,
Bernie and Bill Baker
Tammy and Family,
I listen to K-Love everyday in the car and on the internet. Here are some encouraging word for you, Jesus replied, "I am the bread of life. No one who comes to me will ever be hungry again. Those who belive in me will never thirst." John 6:35 NLT. I belive that the Lord Jesus Christ will be with Taylor though this surgery. My family and I keep praying that Taylor will be healed.
Love you all,
Mark, Tracy, Emily, & Sydney
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