Look carefully for the “good” news

I try to end my posts with Hope.  I’m not promising that this time. I’m on an iPad without a keyboard but I just want to post an update. I’m also exhausted from only 4 hours of sleep so let’s hope I remember everything. Also, please forgive the lack of eloquence.

Dr. B thought he knew what it was because Levi will be inconsolable with pain and then 12-24 hrs later have a bloody diaper (can’t even call it bloody stool anymore really. There is no stool, just blood). The non-technical term is telescoping. It would show up on a contrast X-ray and requires surgery to fix.

Yestedays contrast was an enema which only goes so far up but it didn’t show anything. They had to wait for all the dye to leave his system to do an “upper GI contrast study”. Originally they said a two day wait but fortunately he was ready today.

He also had an echocardiogram yesterday. He has a hole in his heart. It’s “trying” to close but hasn’t succeeded yet. Dr. N said the good news is it’s fixable if it won’t close on his own. I have actually come to a place in my life where the possibility of heart surgery on my 5 week old, 9 lb. son is “the good news”.

He is on medicine and oxygen to treat pulmonary hypertension he has. She’s hoping treating that this way will allow his heart to not have to work as hard so it can repair itself.

Dr. R has him today. She said the GI specialist came by and said it’s not a milk allergy and he’s hoping todays study shows the problem. She also said she has never seen as much blood in a diaper as she saw from him last night. Today he looks really pale and his blood count is dropping so they “may have to give him blood (through a secondary IV) especially if he’s going in for surgery.

We had the same Dr. today for the contrast study that we had yesterday. She said she has made it her “personal pet project to figure out what’s wrong with this guy”.

Today’s contrast study also showed nothing and made him scream and throw up.

Now they are saying they hope to get an ultra sound and if that doesn’t show anything, then a CAT scan and if that doesn’t show anything, then a camera down his throat and maybe a biopsy, and if that mocking bird don’t sing…

If it is the telescoping it’s possible the intestine just happened to not be doing that at the time of the study so an ultra sound my show the area being damaged by that repetitive motion, if that’s what it is.

He now has a team of Dr.’s and specialists who are worried and frustrated and concerned. They are all puzzled and he’s not getting any better.

At this point I’m worried he’ll lose so much intestine it will never work and he’ll be sent home to live on IV nutrients, never eating, and a colostomy bag. Colostomy bags have always been a HUGE fear of mine. How will I raise a child with one for the rest of my life? How do you eat in a household with a child who can’t?

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7 Responses to Look carefully for the “good” news

  1. Amber Briggs says:

    Amanda,

    Through Christ, you are strong enough to provide him with any type of care that he needs when he does go home. I am praying that little Levi will be healed in whatever form that may be including that the Dr.’s will find something definitive to move forward in his treatment. If I was there right now, I’d give you a huge hug and cry right along with you. I know how frustrating and scary it is for them not to quite know what is going on or how to treat him. Just know that the ultimate physician is on your side and you have SO much prayer cover that there is no way God’s will in the situation will not be done. I will be continually praying for little Levi and all of the loved ones that are surrounding him right now. You can do this! He can do this! Most importantly, God has this handled! <3

  2. Phyllis Koenig says:

    Amanda,
    There is a couple who go to our church. Their daughter was born without the proper plumbing. They have been dealing with a colostomy and she is now 7 I think. If you need to talk to someone just to work things out in your mind, let me know. They are a dear couple and I know she would have a lot of wisdom to offer.

  3. Shelby says:

    I can’t explain how much I feel for you. I am left with few words because I don’t know what more I could say to show you how much I support you and hope for you other then that I love you so much, you and your whole family. I am so sorry for the pain and stress you are having to endure and I hope God relieves your hurt and does not forsake you and Levi and heals him and your heart.

  4. Sharon Sulzle says:

    I haven’t been on facebook but I my mom has been keeping me update, but I just wanted you guys to know that I have you all in my thoughts and prays and I will be praying for some answers for little Levi.
    Love you guys!

  5. Georgia says:

    Amanda, my heart is breaking that you and your family have to go through so much pain and not knowing what is really wrong. I believe that God is with you and watching over your whole family. I truly believe Levi will be healed in name of the Lord. I continually pray for Levi and your whole family.

  6. Andrea Oakley says:

    Oh Amanda, I sit here weeping and praying for you, little Levi, Josh and Jayden. Hang in there, sweet friend. And Levi, fight, little man, fight! All my love,
    Andrea

  7. Nancy says:

    I’m with Andrea, I cannot but weep and pray for Levi and you and Josh. I know the hurting are very dear to God’s heart. May you experience the comfort and courage of the Holy Spirit in each moment of this trauma.

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