Monday, March 21, 2011

It’s been a few days since we’ve talked.  Many things have happened and changed in those days.  Seton is now 11 days old, still stable, and doing pretty well.

When we left you last, we were torn with a decision to either leave his feeding tube through his nose and into the stomach (actually small intestine) or sending him into surgery to have a g-tube placed in his stomach.  Both paths have pros and cons and neither are necessarily “good” options.  After much thought and question, prayer and heartache, we opted to forego surgery at this time.  We have peace about that choice for now.

We again met with Dr. Habersang on Saturday and addressed numerous questions that were still on our plate and made sure he was okay with and in-line with our decision.  As previously noted, he is not only extremely intelligent and beyond capable to handle special needs but also compassionate and insightful on a personal level.  We are so blessed to be under his guidance.

Shawna and I began “rooming-in” today.  Seton is no longer in the NICU unit under the watchful eye of the doctors and nurses.  We are camped out in a room across the hall from the NICU; just the three of us.  He is still on a monitor the fine folks across the hall can view, but we are caring for him; a pseudo-home experience to help prepare us and allow us to attend to questions before leaving.  He will be going home with a feeding machine, suction machine, oxygen, and a nebulizer.

Medically speaking, Seton is being sent home to pass away.  Shawna and I feel differently.  We are taking him home to live – no matter the time frame.  We are still hoping and believing completely that he will get better and be healed and whole.  And we have peace about that as well.  We’d really appreciate all of you continuing to stand with us in that belief.

Seton needs 24/7 care and about 12 hours of home health care each day.  Expectedly, we are beginning what feels like a battle with insurance and SSI to provide the proper level of care he needs.  If you’re able to pull any strings here, we’d love a tug J

This has been a trail full of mountains and valleys.  Some days have been challenging on a level beyond comprehension, and some days have been serene and almost void of our reality.

Thanks for praying for us, thanks for supporting us, and thanks for following us.

Zane

“Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." The Lord is good to those whose hope is in him, to the one who seeks him.” Lamentations 3:21-25

9 comments:

  1. I love that you all are now with him and caring for him full time. Although it is not the most ideal situation you are both still providing for him. We will really being thinking of you all as you head home with your sweet angel! He is so lucky to have parents that care so much for him and each decision that is needed.

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  2. It is so great that y'all will be able to take Seton home so soon! What wonderful news! He has come so far, and has defied all of the odds. I am so thankful to see our amazing God working in your little boy's life. I will continue to pray, and to praise God for all He has done for y'all and for Seton thus far. I can't wait to see coming home pics of your sweet little guy!

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  3. Zane,
    I have been praying for you guys and Seton. He is a strong little boy fighting hard and God has been by his side helping him through his every days. I will continue to pray that Seton is healed each day that comes and goes. I'm excited to hear that he will be going home soon!!!

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  4. Praise God that Seton is going home with you soon! I hope to get to come and meet him soon once this transition is made. We totally agree that he is going home to live and only God knows the numbers of his days on earth! We are so thankful for the days that He has given to you with this precious little boy and pray there will be many, many more! We love you guys bunches!!

    "I will praise you forever, O God, for what you have done." Psalm 52:9a

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  5. Lacy and I are still praying for Seton and you and Shawna!

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  6. You don't know me, I am one of Emily's many cousins, Kim. I just felt it in my heart to let you know what a wonderful gift God gave you in Seton, and I too believe you are taking him home to live. God gave him to you for a purpose and what ever amount of time Seton is on earth he is doing Gods will and as with any of us when that is done God will call him home to walk the streets of gold. At some point God will show you the full purpose of your sweet little boy. Stay strong in your faith. I and my family are continuing prayers.

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  7. As I am reading .. I am in tears! I will pray for your precious family and I will pray for Dr. Habersang's wisdom. He is an AMAZING man and he is heaven sent!

    I am a friend of Shelly. Prayers for you!

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  8. Seton is such an inspiration. All 3 of you are on our hearts and our minds, and we will continue to pray for you.

    Will and Natalie Decker

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  9. Zane, in response to your insurance/SSI battle: I'm praying you have social workers guiding you along this path. If you do, then what I have to offer below will probably be redundant, but I'll share what I learned based on my recent experience.

    The SSI application process for us was a nightmare because I wanted to accomplish it all by phone...my suggestion...take the time and make a face-to-face appointment with your local SSI office. I wanted to avoid having to 'go' somewhere at all costs...and it ended up 'costing' me so much more time, in the end. I chased my tail for months using the 1-800 # all because I was so worried I would have to gather up all kinds of information and fill out forms before I could 'go' to an appt...etc, etc. Granted, your experience could be completely different, but once I finally just went to the local SSI office, it was as simple as a conversation and them entering some information in the computer and I was done ~ with that piece at least.

    In Oklahoma there is a program called "TEFRA" http://www.okdhs.org/programsandservices/health/tefra/ (I know you're busy, so I'll briefly explain). Since my husband and I both work, Tessa was ultimately denied SSI based on our "over income". That is where TEFRA came into play. After I applied at the local SSI office and once we received the denial letter from SSI (10 days later), we used that denial letter along with documentation from Tessa's doctors to apply for the TEFRA program and ultimately received Medicaid as a secondary insurance. (TEFRA) The Tax Equity and Fiscal Responsiblity Act of 1992 allows children with physical or mental disabilities, who would not ordinarily be eligible for State Supplemental Income benefits because of their parent's income or resources, to become eligible for SoonerCare (Medicaid).

    My point being, check and see (if you haven't already) if Texas has a similar program in place to act as a secondary insurance for Seton (assuming you guys have a primary insurance and will ultimately be denied SSI due to "over income"). I assume the SSI application piece is as crucial for ya'll as it was for us regardless of what other programs you know about that Texas has to offer.

    Sorry to leave all this here on the blog...but wanted to share right quick in case any of this could be helpful. Email me any time if you think I could help with any questions: butterflywhit@hotmail.com

    Praying for you guys!
    Whitney

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