We discussed the options, and decided to wait. We didn't even do the bronchoscopy. Dr. Huffard did prescribe a "Passy-Muir" valve, also called a "speaking" valve. This is a small valve that attaches to Garren's trach, allowing him to breathe in through the trach, and out through the mouth. This will help him as he begins to learn how to swallow again.
We also asked Dr. Huffard about Garren's swallowing. There is a rehab technique called "vital-stim" which is used to help people with swallowing. You have to be specially trained and certified to do this, so it is rather difficult to find a speech therapist that uses this technique. From everyone we've talked to, It sounds like Garren would really benefit from vital-stim. Dr. Huffard is going to help get us connected with someone who can help Garren with this.
Here's what I explained to the doctor: Anytime anyone has "taught" or "shown" Garren how to do something, he seems to pick it up very quickly. It's as though he literally has to be reminded how to do things. Once he he reminded, things seem to progress. I want someone who can show Garren how to swallow, to wake up those muscles, to remind him how it works, so his brain can take back over that function. So Lord willing, we will find that person who will take agressive and proactive steps to get Garren's swallow going again.
This afternoon Garren was in the garage (which has become his therapy gym). The OT and PT were there, and I was helping out. As he was doing some exercises, he become visibly upset. We stopped so we could figure out what was wrong. "Does anything hurt?" No. "Do you feel sick?" No. In the street we could hear a couple of his buddies laughing and having a good time. Garren spelled out for us "I want to play." I haven't hurt for him this much in a while. We've been doing our thing, we've been working hard, and he's been progressing so well and so quickly. I hugged him, I told him that he's doing great, and I fought back the tears.
Tomorrow we go in super early for Garren's arteriogram. It will be interesting to see the results of this test. Thanks for your prayers, I'll keep you posted.
9 comments:
As a Mom, this post makes my heart hurt. Brighter days are coming.
Lord, sustain and encourage Garren when he is down. Fill him as only your Holy Spirit can. Encourage Garren with your still small voice. Show Garren the miracle you are working in him and through his story. Restore Garren completely. In Jesus name we pray.
The Kanipes are praying daily!
We will pray about the vital-stim as well. It was sad to read about him wanting to play. I appreciate all the updates good, bad, happy or sad. Garren is a proven fighter. He will overcome we just don't know when.
Makes my heart hurt too. Definitely praying that God sends the right therapist his way to get him swallowing again!
As always we continue to lift you all up and are glad to know about specific prayer needs. I know your heart hurts for Garren and we lift you all up as much as we do him. We are looking forward to see who God brings into your life for this specific therapy technique. I think protecting his airway at this point was a wise decision and it seems progress is being made with the md working on finding a therapist so all was not lost this am. Hang in there we love you all.
Karen and Cecil
My heart hurts too ...trust in the Lord..I will pray for you Garren
Glazes
Praying!
Praying for Garren to have patience. It will all come together.
Love,
KLP
This brought tears to my eyes. I'm so thankful that Garren has such a wonderful support system, a wonderful and loving family too. I know, Garren, that God is a good God, He is full of grace and grace always gives more than you ever hope for or ask. And I believe more than anything God wants to see you play. So trust in Him, keep looking to Jesus (Jesus is your strength, He is your health) and believe on Him. He loves you more than you can fathom.
Toni Vines
I was wondering, is there any type of therapy, that wouldnallow some "play time" with his friends? We are continuing to pray for Garren.
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