Wednesday, January 2, 2013

Day 58 fish Oil Study:(

After yesterday I thought I'd have more great stuff to write about.....today Jon changed her trach and she had a small storm.  It only lasted 5-10 minutes but still her heartbeat went up to 170 and she shook.  She has never had a reaction to her trach being changed before and they did it really quick.  She brought herself down and didn't need any extra meds.  she hasn't had another problem but I am worried about tomorrow....I'm worried about the fish oil.... she had NO problems in NY.  She was as stable as she could be under the circumstances, she was progressing daily or at least was staying the same daily and hitting new milestones every few days.  I do not believe this regression we have seen is because Selah herself is unstable.  I don't feel it in my gut.  I trust my gut instinct, I've had almost 9 yrs of dealing with a sick/handicapped child.  My gut has always been right.  My gut tells me that something with the fish oil is off.  When it was started 58 days ago, she went from having "storming" daily, often several times a day, to no storming, no matter what was asked of her (in therapy)  That remained consistent even when she had pneumonia.  she was amazing everyone....what has changed?  Her location and the way the fish oil has been treated.  Now although we had felt everything had been addressed, this has happened again.  I know if I go to the doctors about this they will just tell me that Selah was a near drowning and near drownings are unstable......  Well most might be but she has never been once the fish oil was started.   I am just sick about this....

Please pray for Selah....pray that there will be no more episodes and that we can get everything set up for her to be transferred home asap!!!   When she is home ~ Jon or I will be the only ones to touch her fish oil.  We will make sure that it is done correctly.  We know she is the 7th person to be admitted into this study. The other 6 recovered from their comas, some did have some physical delays but they all recovered.  We saw so much recovery in the first 40 days it was unreal!  We believe that she will regain the function she had in NY and improve beyond that if things are done correctly.

Tonight I accidentally called Strong's Hospital instead of the one she is in now (they are both listed under Selah in my phone)  I asked for her nurse and the floor receptionist caught my voice and we started laughing.  She & I spoke for a few minutes and she told me how they all think of us...I could have cried....I loved those folks so much and had so much trust in them....  I do not feel the same about where she is now.  Although we do have some lovely nurses that we like and would be glad to take a few of them home with us to work with her.  But overall it is not the same and that is hard for me.  I feel like Selah is just looked at as "another drowning case" and "you know they don't progress"  I don't feel like they believe us about her progress in NY  although they've talked to her therapists in NY. 

Selah is different as every case is different....we saw real progress.  Now we see real regression...she was stable too long for this type of regression at this point in the recovery process.  Something is not right....

Please pray for Selah and for us that we have wisdom. 

7 comments:

  1. Stand Firm Mom. Sometimes we have to scream so loud for the doctors to hear us. My son has walked on his toes since he was 9 months old and it took me till he was 5 to get the doctors to do something and they still can not tell me why he does this. Praying for you and your girl.

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  2. I am praying SO HARD for Selah.

    ALWAYS trust your gut, especially when it comes to your kids. So far, my gut has never been wrong (and my kids, while there are some health issues, are not considered special needs). God gave us that instinct for a reason!!

    Please forgive me if I am out of line saying this.....I have felt very strongly that you should be in NY. I know I don't know you in person. But I keep "feeling" like you need to be there.

    I can't imagine the strain that this has put on your family...I've never been in this situation. And honestly I don't know if this is God telling me this, or intuition (I come from a long line of women w/ more than hunches) or just wanting that level of care for your sweet girl (because like you said, they are incredible). I don't know if that's even possible. But I am praying about it and praying for guidance for you.

    I am very sure that you and Jon will treat the fish oil like the liquid gold it is! And I totally agree with your opinion--that something is NOT right--and it's not Selah. I mean, a small part could be her "waking up" and sometimes there are setbacks....but to go from where she was to where she is now? Not to mention that if the caregivers in Jax feel this way--it will "come out" in their care, even if they never say anything!

    Again, I truly hope my opinion is not hurtful. I want the very best for Selah (and for your family) and will pray for God to give you the answers, and to provide, as well as His healing for your jewel.

    Love to you all,
    xoxoxo

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  3. What kind of fish oil are you giving her?

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  4. We are praying for Selah to continue to progress!
    Happy new year to you all.

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  5. I too believe that something is off. Perhaps they are not even giving it to her at times. It will be better when you have control of it. Soon.

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  6. You know how we as people respond differently to those that believe in us and are empowering than we do with those that put us in a box or simply don't have faith in the situation - or how we can often live to the expectations that we perceive are there for us.... I wonder if part of Selah's setbacks are in response to the attitude of the caregivers in this new place. It seems like there was so much celebration over each and every new thing in NY, and that perhaps in this new place they are merely going through the motions of caring for her. I realize that it's much bigger than what I've stated, but I can't help but thing it's part of it.
    I look forward to hearing about her progress once she gets homes.

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  7. Go with your gut on this one, Yvonne....Like I said before, I think that they aren't as concerned for Selah like the people in NY...Wish you guys could have stayed there longer with the great care that was given to Selah....God sees and He is faithful....When you are home, as you said, you and Jon will be the only people working with the fish oil...The medical field isn't used to anything NEW that may aid in healing faster than they normally do things...Maybe the people in JAX aren't as flexible as the people in NY and they don't think that the fish oil is valid...Who knows??? Just praying for you guys to be home and loving Selah and doing what it takes to help her out of the maze she is in...
    Love from NC

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