Thursday, May 3, 2012

G Tube?... (5/2)

We've reached a crossroads of sorts.  We had a meeting with a surgeon today about a possible G-Tube and Fundo surgery.  The G-tube is a tube that would be inserted in Thatcher's stomach directly into his stomach.  This would replace his feeding tube that goes in his mouth, down his esophagus and into his stomach.  The Fundo part of the surgery is to help his reflux which we've seen, and has been confirmed through tests.  The Fundo is basically a string that ties around his esophagus at the stomach to basically stop the reflux from happening.  The surgeon came in talking about having the surgery this friday and had papers ready to sign and everything... at this point we are not ready to commit to that, and we seem to be like a wave tossed back and forth by the wind because we are able to convince ourselves either way of whether to do the surgery or not.  On the one hand we have seen a correlation between his reflux and his blue spells, he typically has more spells while he is eating.  The tests confirmed that he refluxes almost immediately when feeding, and when he was not eating before the bronch procedure he did not have a single episode.  On the other hand, the surgery poses huge risks, how much will this really help him?  His issue of his airway will still remain which is really the more severe issue in terms of his blue spells.  We are doing our best to seek the Lord's will to ensure that we remian in step with Him and we act according to His will for Thatcher, but we need discernment and wisdom as this is a huge decision for Thatcher.  This surgery would require for Thatcher to be intubated again, and would require even more anesthetics and pain meds than the Bronch procedure.  It is a huge concern of how he will handle coming out of the more invasive, painful procudure.  How he will handle being intubated again (this is a HUGE concern), and how he will handle the anethesia.  He recovers from things MUCH more slowly than the typical infant so the fear is that he may not regain his respiratory drive.  Please lift Thatcher up in prayer for continued healing, and for God to be glorified in and through Thatcher's life.  Also, please pray for discernment and wisdom, and a peace about any decision in this regard, confidence that we are acting within the Lord's will.  Please pray that God would be an ever present pillar of smoke or pillar of fire so that we can know exactly where to step next, a visible direction of where to go.  Thank you all for praying with us on this journey.  To God be the glory.

18 comments:

  1. Honestly, it's a pretty simple standard procedure. If it would relieve the pain of his reflux it would be an answered prayer.
    Additionally if he's been micro aspirating into his lungs breathing would get easier and swelling in his trach would go down.
    Bonus, going home with a button is much easier than a tube:).
    Choosing surgery is never fun.

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  2. Praying for the three of you.

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  3. I'm sure you're not really interested in getting votes, but as a nurse who has cared for children with g tubes....the children always seem to do better with the switch. It's a big decision for you guys. I know if you listen, He will guide you about what to do. In some ways, a gtube seems freeing to me. I will pray for understanding and peace. You can't make a wrong decision because God is in control.

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    1. I believe you have said it well....God is in control.
      God Bless you all!

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  4. I work for a large group of neonatologists, and I have seen this procedure performed many times. It is a fairly simple procedure, and it is helpful. The doctors are interested in doing what is best for him. Trust in their expertise and know they are trying to do the best thing for him if you can. Praying for you and him in this journey.

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  5. Whitney and Eric, As I prayed about this, I had this thought. Up until this point, the doctors have not wanted to really do anything EXCEPT convince you to let Thatcher go. It seems like this round of doctors want to do everything they can to make Thatcher's life comfortable. You have prayed and prayed for the doctors to see Thatcher as a living, breathing baby and not just a medical puzzle. It seems these doctors are the answer to that prayer. While of course their scientific minds DO want to solve the puzzle, these peeps seem to want to help Thatcher have the best shot at a comfortable, easier life. Nonetheless, every decision weighs heavy on a parent, especially ones of the weight you two have had to make pretty much every day since your ultrasound.

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  6. Stefanie PetersMay 3, 2012 at 9:14 AM

    Whitney & Eric, I don't know if you remember me (I think Eric & I met once or twice in high school), but I found your blog through mutual friends and I've been praying for Thatcher! I wanted to tell you that I have had a version of the fundo surgery, that it really does help, and that it is easy for surgeons to reverse if needed. It's been amazing how much reflux effects; once my reflux has gotten under control, it's been easier to swallow, my voice sounds better and feels stronger, and I am sleeping better. Of course, surgery is a big deal for such a little guy as Thatcher! But I agree with Carol's prayer that maybe this is an answer to prayer for you--that the doctors are finally looking for ways to help Thatcher live rather than help him leave. I know from experience how difficult it is to navigate when to follow doctors advice when you aren't sure what God's next step is, so I'm praying for you that He will close all possible doors except one, and make the decision for you. He is working in this! Your faith has encouraged me these last weeks as I've been facing another possible surgery myself.

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  7. Whitney and Eric, these decisions are so hard and ones parents shouldn't have to make. We are praying for wisdom and peace and healing. Asking God to guide you and protect precious Thatcher.

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  8. I AM PRAYING MANY TIMES THROUGHOUT THE DAY FOR BABY THATCHER.
    ALWAYS LOOK FORWARD TO UPDATES AND HOW I CAN PRAY.

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  9. Praying for healing for Thatcher and strength and peace for you. Although my daughter did not have many of the issues Thatcher has, we had something similar happen following her birth. For an unknown reason, she would have apnea spells. Initially, the part of the heart that closes off immediately after birth had not and they had attributed these spells to that as well as respiratory distress. When we were talking about bringing her home, she had to go through a "carseat challenge" where she was placed in a carseat for 30 minutes. The expectation was to not have any apnea spells during that time. Just before we got her ready to go, we fed her. She had several "spells" during the challenge and failed it. Through some other tests, they concluded that she had apnea related to GERD and placed her on an apnea monitor to go home along with other interventions to treat the GERD. There was some talk of the fundi, but we kept waiting because we were told that infants usually outgrow this. When she was 5 months old, she was finally removed from the apnea monitor because the apnea episodes just came to a stop.
    I know you are at a different place and the interventions they recommended for her may not be plausible from different posts you have made. I hope and pray that God guides you in your decisions and you find peace from that.

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  10. Praying for Thatcher and you all. God is truly an awesome God. Sixteen years ago my son, Emmanuel, was born three months early and they gave me a death sentence. It seemed like everything negative happened to him BUT GOD!! I would read the Word of God over him, sing to him and tell him he is coming out of there. I asked the doctors not to speak over him concerning his issues but tell me so that I could tell My Father, who is the creator of all, what was going on. They told me to plan his funeral but I stood on the Word and put God in rememberance of His word. I simply realized that I could only love and nurture Emmanuel and the rest was up to God. God is your refuge and strength; He is a very present help in the time of trouble. Continue to be open and honest with our Father about where you all are and trust Him to be Sovereign. I plead and apply the blood of Jesus over and around you all and release the ministering and warring angels. I pray the Lord of Host will arise and cause the enemy to scatter. May the peace of God flood your hearts and keep you in such a precious time as this. We thank God in advance for the healing virtue of Jesus Christ flowing in Thatcher's life. I decree miracles, signs and wonders in your lives and the overflow of God's anointing.

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  11. This is not a decision for any of us 'out here' to make and so ... we PRAY! And ... so do you both! These procedures(g-tube and fundoplication)are solutions for obvious problems. As a pediatric nurse who has 20 yrs experience in newborn nurseries, NICU of all levels, peds oncology and general pediatrics. All these areas can and do require feeding alternatives and various times for various reasons. My earliest training fresh out school was right there at Tx Children's in Houston! Pls know that although there are minor challenges after g-tube placement (possible infection, g-button/tube malfunction etc) I don't remember a parent, some in a similiar situation as yourselves and some with very different circumstances, ever regret getting a g-tube/button placed. The obvious advantages and disadvantages have probably been laid out for you by physicians and nurses. If the procedure can eliminate even one episode of choking or one blue spell, or replaces one episode of him struggling to catch his breath during a feeding with a moment to relax in your arms, lay comfortably and stress-free and gaze in your eyes - it will be worth it. I know you are probably overwelmed with 'comments' or 'advice' about the right or wrong thing to do and by no means am I wanting to add to the information overload. Just know that there are many of us parents out here that have NO doubt in this world that you both are our 'HEROES' and that God looks very fondly at you both. Thatcher is proof of that - because Lord knows I haven't seen you since you were 6yrs old!! God has you both on a very, very special journey with Thatcher and you are doing a fabulous job letting God do His Work in you family!
    In His Amazing Love,
    FC
    ps my 10yr daughter has me read the new blog updates to her; she loves to see the pictures and I often hear her pray for Thatcher before she falls asleep

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  12. Whitney & Eric,

    We love you all and pray for you many times daily. Your faith is an inspiration! And for two so young to have to face all these challenges and desire so desperately to do God's will ... you already have a bunch of "bling" in your crowns of glory, and I know Thatcher senses your presence and your unfailing, unconditional love. When you close your eyes at night (and I hope you are getting some rest), may God's angels surround you and and may you hear God speaking to you through the Holy Spirit straight into your hearts and minds, "well done, good and faithful servants".

    Lord, please give Whitney and Eric and Thatcher a great big embrace today, hold them close and let them rest their heads upon your chest as they listen to the strong, eternal beat of Your heart saying "I love you, I love you, I love you." Love, Robin McCann

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  13. I cannot help but feel God is speaking to you through your own blog. We continue to pray for all three of you. We pray that you feel God's touch and His voice loud and clear.

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  14. PRAYING, PRAYING, PRAYING!

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  15. While no one knows your child like....there are many pros to a gtube. My little one had a NG for 9 months with horrible reflux...I can say after switching to a g his reflux is much better. The NG keeps his valve open so they reflux much easier. There are two websites on fb you should look at....one is feeding tube awerness they also have a seperate website with the same name...lots of info on both surgeries pros and cons....the next is mommies of miracles....they might be able to connect you with families that have been through the same things as Thatcher. We pray for Thatcher and your family everyday.

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  16. Just praying for you and praying you find comfort in knowing that God loves Thatcher even more than you can - which as a parent is beyond our comprehension! As a parent that has walked a similar rode that you are on I want to share a thought that changed my hurt for my daughter.....a friend spoke truth to me when I was furious with God for not "fixing" my daughter. She said you have to remember God provides for each of us according to our needs and you as a mom have to let go and let God provide for your/his baby. As parents we can love on them and be their biggest advocate and cheerleader but only God can give them everything they need no matter what they are against. Ten years later I still remind myself of that almost daily but I have seen that God has an individual relationship with every soul he creates and me trying to anticipate and carry my daughters challenges leaves me exhausted and yet she literally is singing his praises daily. We were told she would probably never walk or talk. We did the g-tube, the trach, seizures, etc. but she happy and she runs around singing about God with joy in her heart! I was forwarded your blog and no way know you but will be in prayer for your faith as you go down a road that no one volunteers to go down with their child. I pray that you will find random joy in the most inexplainable places and ways! Blessings.

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  17. It helped and still does with my Family member with autism and she is 27. It also helped this little baby. Although she had an in curable disease of Sma and passed away- her story is on averycan.blogspot.com, very inspirational like your page. God bless all these hurting babies! May God be with you in this decision!

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