Wednesday, January 2, 2013

Day 59 Fish Oil Study~ complete bad news

I do not even know how to write all that has happened today and all that is on our minds...

This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross.  It looked so odd that it caught my attention immediately.  I went over and went to move it and she winced and her heart rate soared.  I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt.  An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing.  The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own.  We still asked for an xray that took hours to get and more hours to read and get the results.  Tonight the results came that there was no broken or fractured bones.  She stormed today right after they were doing the xray for about 5 -10 minutes again.  She reacted to being moved as if it really hurt her.  All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that.  I have no idea...my gut tells me NO!

This is a new doctor to us.  We went through all of the ways Selah has regressed since she has been transferred here.  The doctor, of course, puts the blame on Selah.  "She has had so much brain damage, she is unstable"  I kept repeatedly saying that she was stable for weeks and weeks in NY.  It was like talking to a wall.  She did call in a neurologist, who will come in tomorrow.  She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation.  We do NOT believe that for a moment!  She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem.  She also suggested Selah may have increased water on the brain.  She thinks a CAT scan (because it is easier to schedule) should be done.  We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!!    We've asked for a MRI for weeks and they act like it is soooo hard to schedule one.  Truth is NO ONE has tried to schedule one to my knowledge. 

I am beyond frustrated tonight.  Since the day we arrived, we were shocked at the decline in Selah.  It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah.  It has gone from bad to worse.  We do not feel that we are listened to at all.  We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done.  We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child. 

Please don't make a ton of suggestions.  Right now we just want to get her home.  It is almost impossible to transfer her to another hospital at this point.  We know, remember we were in NY for 18 weeks?  At least 12 of those weeks trying to get to Florida.  Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday. 

Jon and I are very upset, worried and distraught.  We do not know what is wrong but there is something terribly wrong here.  I still believe it comes back to mishandling of the fish oil.  I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again.  Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil.  I just want to get her home although I am petrified of the responsibility....

We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware.  She was making great eye contact and doing things.  Now she is barely there again....it's awful to have had such great progress just to see it slip away.  I think that hurts more than anything!!!!

28 comments:

  1. It is AWFUL to be in the hands of those you do NOT trust! This happened to us when a team of doctors changed with our son. :( It was the most AWFUL feeling!
    For us, we were fortunate to be able tor reach out to the dr's before.... but for you, they are in another state!
    Praying for peace and to get Selah HOME!

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  2. Continuing to pray for your little sweetheart, and hoping that home will help her emerge from her coma.

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  3. praying, I am so sorry. Hoping for monday release.

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  4. Show them your videos that you are watching - let them SEE for themselves what she was doing in NY! Praying!

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  5. PRAYING....I have not been the situation you are in, but when I tried to get a dr. to listen to me, she just talked down to me...As it turned out, I was right when I had an MRI and it was what I thought...I did not go back to her...Who would after the way she treated me....So, I know a bit about how you feel and I still say go with your gut...I think it is called discernment....
    Love from NC

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  6. Can't wait for you to get her out of there! Trust your gut! It's the place she's in & the way they are handling things!

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  7. Can't wait for you to get her out of there! Trust your gut! It's the place & the way they are handling things! Praying!

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  8. Please please trust your gut. That Mom feeling is seldom wrong. Meanwhile we will keep praying for you and for Selah.

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  9. Praying for a BIG change in how things are handled at the hospital! I am so sorry for all the struggles and as always wish I could help in some way -- I guess praying is my way.

    Love,
    Shawnee

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  10. I am angry, and I have never personally met you or Selah. Angry, worried and praying.

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  11. I can't believe all that is going on! Clearly, the problem lies with whatever is happening in that facility. It almost makes you wonder if they are using the fish oil on another patient, or someone is selling it or something. Have you talked to her previous doc/therapists? What do they say about all of this?

    One thing is for certain, a mother's instinct is never wrong. Will be praying.

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  12. I will pray for Selah to be released ASAP to go home, that you and Jon will have God's guidance in how to care for her. I don't blame you one bit for wanting to get her out of that situation. No doubt, the "gut feeling" both of you are having is spot on and you should go with it.

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  13. I will pray for Selah to be released ASAP to go home, that you and Jon will have God's guidance in how to care for her. I don't blame you one bit for wanting to get her out of that situation. No doubt, the "gut feeling" both of you are having is spot on and you should go with it.

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  14. Yvonne, I'm so sorry. How simply awful! Praying for sweet Selah and many prayers for you all and for her to come home ASAP!!!

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  15. Praying here in Indiana.

    :)
    janet and gang

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  16. Hi, I think Selah can feel it the way you do that these people do not believe she can get better and certainly don't hold any stock in the ability of the fish oil. She was responding to the people in NY because she slowly came to trust them. It must be so hard to watch her progress decline after so many positives in NY. I'm so sorry. I'm heartsick over it. I know you want to get her home but maybe she needs to be back in NY. Maybe it was not a mistake that you called them the other day.

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  17. Sending LOTS of prayers for answers, healing and strength--and for God to open the minds and hearts of the doctors there!!!

    My heart aches for you right now :*( I wish there was more that I can do.

    (And I don't believe them about the MRI....that's ridiculous.)

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  18. I'm so very sorry - and upset by how you are treated and how the hospital staff doesn't believe in Selah. You are continuously in my thoughts!

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  19. I will be praying hard! Trust your mama bear instinct and push, push, push until you get what you need for Selah.

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  20. We're so sorry to hear this....praying to the One who knows and loves your precious one.

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  21. Oh, no. What happened regarding the handling of the fish oil?

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  22. Oh boy. As hard as it is - she'll be home soon - and YOU will be in charge of her care - and then I'm pretty sure, she'll start getting back to the Selah you had in NY. I know it's scary - I can't even imagine - but she'll be in the best place possible, and surrounded by love, she will soar :)

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  23. Patience Faith and knowledge that when you are home you can control the fish oil and monitor her more.

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  24. Prayers for you and Selah. I know when you get your baby girl home and start handling her medical care the way it should be you will see progress I am sure of it. Our prayers our with you and we can't wait to here that you are home with your sweet girl.

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  25. Trust your Mommy and Daddy instincts and get her out of there and home as fast as you ever can . . . Sending hugs . . . and belief.

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