Thursday, December 20, 2012

Day 46 Fish Oil study~ another rough day

Oh my gosh, today made yesterday look like a picnic.....

It started out pretty good.  Jon went this morning and he put on Selah's hand splint and she pulled her hand away and up towards her shoulder!  She did ok in therapy. We met with the doctor and the team and the meeting was very good.  She will be staying until Jan 2.  They are trying to get us 24 hour nursing care, as well as all other kinds of help.  Our doctor seemed to take serious how much regression Selah has had.  Now she is feeling better but still is not doing as much as she did in NY.  The doctor has ordered a MRI if one can be arranged, to see if there is any change in her brain.  Selah's meds had been changed, a new one added that is supposed to help her wake up and it doesn't seem to be doing much.  The doctor had dropped down her BP med ( it can make her sleepy/sedated) and her Valium had been lowered.  We are all for lowering medicine!

So we go back in the room and the nurse was giving Selah a shower, she was so clean and sweet smelling.  But then Selah began storming....and she made up for the past 45 days.....she stormed for at least 3 hours...  it was horrible,  I got in bed with her and held her to rock her side to side, which calms her down.  I could feel the waves as her body would tighten and then loosen.  It was like a woman having contractions.  I could tell when it was coming before her heart rate would go up.  Nothing seemed to help.  they gave her 4 pm meds early and that helped for  a few minutes but then a wave would come.  Then they gave her a bigger dose of Valium and finally she stayed in the 100-125 heart beat a minutes range, which is still high but better than 180-190! 

We do not know what to think....  my first idea is that the Fish Oil was compromised and not kept cold enough. I've noticed the last few days that I don't smell the fish oil smell on her!  That seems odd to me!   I hope with all my heart it is that! If that is the answer, we should knwo pretty quickly as we are going to use a new bottle tomorrow!!!  and when she started the fish oil, she had no more storms after the very first dose.

The second idea is the med changes but the med changes made were not big steps at all and she should have been able to tolerate them.   She had tolerated her Valium being lowered the last week we were in NY with no issue.

Third idea is that something happened to her brain on the air plane flight...so was so different as soon as she got here and we really can not blame it on sickness at this point.  A MRI has been ordered

Fourth idea is that she is more cognitive and she has shut down due to her institutional autism.  This is not consistent with her not having a reaction when her eyes are threaten ( she should blink when the fingers come towards her eyes and she doesn't always do that-she rarely does it)  If she shut down,  that would mean she has more cognitive abilities than we see in other areas.

Jon and I did discuss this tonight and we look at this situation and try to put Sam into her place.  Sam would freak out with the changes, new people, going from gym to rooms, to offices if he had any awareness whatsoever.....  so that probably has to play into this some but who knows....????

We are perplexed and heartsick....

Please pray... we do not know what to think, things are so different and we are worried.  In a week and two days we have gone from hope for her future to despair.  It makes no sense to us.  I'm glad the staff here is listening to us but I know it is hard for them to imagine her being any different than she is now.  This is not normal!  She has lost so much!  I am not blaming it on the hospital here, there is something going on with Selah, she is not even responding to us like she did before.  It's like we see glimpses of her, as she was, before the move but she is not as involved with us as before. 

I came back to eat with everyone and was going to spend the night with Selah but her nurse said she is sleeping and everything is calm and normal right now.  So I'm going to go to bed soon and just hope tomorrow will be better. 

Please Please pray that we find an answer to help her!!  Pray that she will be able to get back to the point she was and no more storming!!!

22 comments:

  1. I am praying Yvonne for sweet Selah. I can't express enough how much my family cares. You all are in my constant prayers. It might be Friday sweet bloggy friend, but SUNDAY IS COMING! HE loves you and Selah and your family so much. Selah is the apple of His eye.

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  2. I wish you all the best with Selah but it almost sounds like you have to start over again maybe not right from the beginning but close to it. I think you are right she is aware of new people, new paces, different routines; she doesn't like it, who would and she has withdrawn. If that is the case it is so disheartening after all the great progress she made in NY but you did wonders with her there and you can do it again. I know it's easy for me to say but you love her and you have a strong family and you can do it, Selah can too just be patient yet persistant. Praying for you.

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  3. Hi Yvonne. I read your blog every day but have never commented. Please know my prayers are with you every single day as I read. God bless you.

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  4. Hi Yvonne. I read your blog every day but have never commented. Please know that my prayers are with you every day as I read. God bless you!

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  5. It sounds from your blog that the storming and most serious decline correlates to the addition of the new medication and that is completely plausable. The fact that she doesn't smell like fish oil is also a very likely correlation. The drug overstimulating her brain and the fish oil that calms her brain missing. Perhaps there has been an error with the dosing AMOUNT or frequency of her fish oil. Drug errors are VERY common. Selah should still smell like fish oil. Remember you said you could smell here there before you saw her. IF she is being dosed correctly she should still smell fishy! I also wonder about compromised brain and oxygen utilization at different altitudes although I know nothing about it. THere is also lots of literature regarding coconut oil and compromised brains such as alzheimers and parkinson's disease. it acts as an alternative fuel for damaged brains to use. They use it for premature babies too! (A neonatologist in Newport News has used it to help her husband with alzheimers and the babies in her NICU)It can even be rubbed on the skin and it absorbs that way as well. It certainly can't hurt... Praying for Selah daily.

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  6. I am in tears and heartsick :*(

    My thought is what if one of her new meds is blocking the fish oil? Docs look for drug interactions but just are starting to look at drugs interacting with supplements. I'm thinking the fact that SHE doesn't smell fishy made me think of it.

    Even if a drug is used off label for say, lowering fat/cholesterol, etc. Like if you use antibiotics and probiotics at the same time (instead of staggering when you take them) they will cancel each other out.

    We are praying hard for Selah. Do not be afraid, do not lose hope. I will pray that God embraces you with His loving arms to give you comfort and strength.

    We love you all so much.
    xoxo

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  7. I'm so sorry to hear about your day and her storming. How scary!!! Praying the new bottle of fish oil will help! And that you find some answers quickly!

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  8. Oh my sweet Selah. I am praying.

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  9. Praying for your sweet Selah. Praying that you will figure out what is going on with her and be able to get things back to normal for her. Praying for you also. Hang in there! We are praying and will keep praying.

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  10. Praying you can find out what has happened or how she is different and set a new course for improvement - it does sound like something significant has gone on. Hope the MRI is reassuring.

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  11. Praying you can find out what has happened or how she is different and set a new course for improvement - it does sound like something significant has gone on. Hope the MRI is reassuring.

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  12. Kurt's words could not be any more beautiful or true....Selah is very loved and covered in prayer by many people. Keeping her close in heart and prayer today and on.

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  13. Kurt's words could not be any more beautiful or true. Many people you've never met love and are praying for Selah. Keeping Selah close in prayer today.

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  14. Definitely praying! SO sorry to hear that after 10 steps forward in recovery, Selah's taken steps backwards.
    Is Dr. Sears involved at all in how Selah's treatment is going?
    <3

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  15. Praying, Yvonne! I won't have much internet access over the next 11 days, but I will continue to pray and will check in when I can. Praying!

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  16. DO NOT GIVE UP!!!!This is a temporary setback. You have not mentioned what the new med is, so I am wondering how it is interacting with her other meds. They may have lowered her Valium too much, and/or lowered her meds too quickly. When I worked with children, we only changed one medication or dosage at a time, and observed carefully before making any other changes. With the best of intentions, the physician may have made too many changes at once. I'm also suspicious of the fish oil.
    Do you know about www.drugs.com? They have a drug interaction checker that includes a lot of vitamins and supplements. You type in all meds, vitamins, Over-the-counter stuff, etc., and you get a print-out of all possible intereactions. This was the standard in several agencies where I worked. You might want to check it out.
    Praying mightily for all of you. How is Sarah doing with her fish oil?
    Love and prayers,
    Sher

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  17. Our prayers are with you. I would agree that if you are not smelling the fish oil there is something wrong! As I said yesterday I also agree with Selah possibly shutting down due to her past. We will keep praying that you start seeing major improvements by Christmas.

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  18. Sending love and many, many prayers your way. I hope that today was a better day for all of you. I'm not calling, thinking that you might want to rest and regroup, but if you want to talk, nobody here will go to bed before MN. (I stay up later...but that's how late the phone can ring without waking anyone!
    Praying that Selah had a better day, without storming, and that Sarah is showing progress with the fish oil. Love to all.

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