Words Fail Me

Mattie has had a difficult few weeks since my last update. He has continued to have spells where his oxygen levels and heart rate drop, resulting in the need for increased support. Our medical team has tried numerous treatments that have given temporary relief from these spells, but have not “fixed” the issues. We have looked at so many possible causes of these spells, hoping for an easy resolution. No answers have come.

After our 2nd Care Conference (which was on Tuesday afternoon), we agreed that the best way to get to the bottom of this was to have Mattie get a bronchogram. A bronchogram is a scope of the upper and lower airway that is done when the patient is awake. Today they intubated Mattie for the bronchogram, and then allowed him to be agitated in order to see what was happening in his airway under video camera. What the test showed is that his upper airway is collapsing when he has these spells, but in addition there is collapse in the lower airway as well.

After much prayer and a lot of talking to specialists, and friends who have had similar experiences with their children, we have decided that the best possible solution for Mattie is for him to have a tracheotomy. It breaks our hearts to see our son need such an extreme measure. It has been a heart wrenching decision. One no parent wants to be forced to make, but we feel it is in Mattie’s best interest and will give him a much improved quality of life.

Not only is Mattie needing a tracheotomy, he will need to be on a ventilator in order to keep proper pressure on his airways allowing them to stay open and function without stress. I will be sharing much more about this in the days and weeks to come. (For those of you with experience with ventilators, Mattie’s lungs are currently requiring a peep of 10 in order to stay open.)

Having a trach will allow us to get Mattie home. Home with his family. Home, surrounded by love. Home will look very different. We will be literally moving an ICU into our home. This will require some major home renovations and a lot of preparation in the weeks to come. We anticipate it to be at least a 6-8 week process, possibly 2  months.  We have a lot to learn, and a lot to prepare for.

Tomorrow is Mattie’s tracheotomy, if all goes as planned. He has remained intubated and is being sedated this evening until surgery.

I will write more later. Tonight, the facts. More from my heart later. Tonight words fail me.


25 thoughts on “Words Fail Me

  1. I have been checking facebook all day!! Oh my heart…….there are no words either….because I can’t see through my tears….I am praying still. We will continue because we know the Healer! HE is pouring out love on all of you through this really difficult decision. I can’t even imagine. I so want to be there to give you all hugs……


  2. Words escape me. You don’t know me, but I have prayed for you as I have watched the Miracle of Mattie’s life unfold through your blog. My heart breaks with you as you make this difficult decision. I will continue to pray for your family.

  3. I am sorry to hear that. I will definitely continue to pray for Mattie and for you all as you learn and prepare for Mattie’s arrival home. And I will especially be praying for tomorrow.

  4. Tracie,
    I am so sorry to hear about Mattie’s turn of events. We know God can and does heal; praying for his will to be done and peace and strength for all of you in the days to come. Please let us know what tangible ways we can all help as well!

  5. Be strong in the Lord and of great courage my friend. Praying He holds you all close and lets peace rule over your hearts and minds.

    Praying for wee Mattie Boy and for you.

    mama to 8
    one homemade and 7 adopted

  6. We’re praying for our little man and his parents lots. This was not the answer we expected at all. I can sense your discouragement in this post. We’ll continue to pray. Mattie’s LIFE is a miracle. We’ll pray for yet another.
    I love you,

  7. oh tracie….my heart hurts for you…i cannot begin to imagine how difficult this decision has been. may God continue to be your comfort and strength in the days to come….as you bring precious mattie home……continuing to pray for you all….with much love and hugs…

  8. Dear friends,
    Please know I am praying for you. I can not even imagine what you are feeling right now. None of this is a surprise to God, and He knew all of this was going to take place in little Mattie’s life. That was why God chose such a unique set of parents and loving family for him to be a part of. Please know that as hard as this is right now, God has not once left your sides, and He won’t now either. He will walk with you through this, one step at a time. Love you guys.

  9. I am sorry you are having to make this decision, but so grateful that you will finally be able to take him home! Praying that he will begin to thrive like never before!

  10. Oh,Tracie, such a hard reality; but, be not dismayed! His hand is upon your sweet baby boy and upon your family. He will guide you, keep you and equip you as you make preparations for Mattie’s homecoming. Put on your armor. Our prayers are undergirding you and John and the children. In the Name of Jesus, we speak peace and healing into this situation. Kiss Mattie’s sweet head for me. Love to all.

  11. Tracie and family,

    I know we don’t know each other very well but you helped us to begin our family and I wanted you to know that so many of us out there are praying for your little guy and your family as you maneuver through these difficult times. We may not speak up with every post or blog entry but we are watching and praying. I’m sorry to hear that Mattie needs this procedure and can’t imagine how you are doing with it but we hope that he can come home to your loving family right away!

  12. Much much prayer for you and for your whole family. May the Lord hold you in His almighty arms and give you peace, especially today.

  13. I have no words … but a stil sense in my heart of confident expectation in the goodness of your – our – God. Praying with you.

  14. Diane, this is an old post that I re-shared to encourage a family that is facing the same decision this week. THIS IS NOT CURRENT!!!

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