Friday, January 4, 2013

Day 61 Fish Oil Study-what a day...

Whew.....

We got there early and Selah had already started storming.....

Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100)  she can get up to 180-200!  She gets stiff, she begins "vibrating" and sweating....it is awful to watch.


We talked with the doctor who seemed concerned and she ordered a bunch of tests.  Xrays to rule out some hips displacement problems, and to make sure her lungs were clear.  MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test.  To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door.  Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down.  By this point Jon and I were so upset and worried.  Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb.  This went on all day.  Thankfully they did the orders so she could get medication as needed to help her.  I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her! 


So every single test came back unchanged.  Normal for Selah/for what was expected.  No change, No seizures, no extra fluid on the brain or blood clots, no infections......


We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation.  When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15!  That is high for a child.  After one dose of fish oil, Selah never had another storm there.  Within two weeks her inflamtion numbers were 1.1!!!!  That was perfect!  She did not have another storm until she had been here for a week.  She has not had that tested since she has been here.  If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study.  We should get those results on Monday or Tuesday. 

Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with.  Since that time her heart rate has been normal although she still seemed agaited.

One thing that really bothers me is there is not alot of respect for the fish oil study.  We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol.  We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study.  We consisitently refer them back to Strong's Hosptial or to Dr Sear's office.  At Strong's the study was put to an administrative review board and it passed!  It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL  It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!!    This is a real sore point for us! 

We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter! 

God knows we HATE what happened to Selah.  We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided.  I think we will do that for the rest of our lives.  We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family.  The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! )  All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't.  It was unreal and perfect:)  Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up!  We made some promises to that little girl, that nothing could change!  We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle!  Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%!  I'm not telling you all this to impress you but I'm just explaining how we feel.  Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore.  I can speak my mind and hold my head up as I walk down the hall.  Why?  Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her!  We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her.   We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah.  I can't imagine what she has gone through.  Pray for our little girl that she will begin recovering again!!! 

One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts.  We both feel very protective of her.  It's funny,but  when she can't really show us affection, our love for her continues to grow...   Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be.   And I know who we are depending on for strength also.  We know God will give us the strength and wisdom we need for the job ahead.  We have no choice, there is no way we are giving up on our girl!!!!

We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule.  but we have a few people working on things.  It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works!  We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!

Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home.  Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!!   We haven't decided what we are going to do yet.  We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church.  I think the most important thing is to get her home and see how things work out.  Our family is pretty flexable....obviously!!!  And we don't have to have things perfect....but it will be perfect for her!  That is the most important at this point.  We can meet her needs right now with things like they are and we will figure out the rest later! 

So if you attend church this weekend please ask for special prayer for Selah!  Pray for peace and comfort for her.  Pray that God will have mercy and heal her!  Pray that the fish oil study will not be hindered in any way!  Thank you!!!  We want our sweet little girl back! 

12 comments:

  1. We pray daily for Selah and your family. I read your blog to our family every day…I so agree with your gut and think that is the most important read of what is best for Selah. I hate seeing what she is going thru since she was moved and pray this will stop and she will again move towards healing.

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  2. I started a comment all about the anger I am feeling towards the medical staff where you are. Then "poof" the comment disappeared! I took that as a message to shut up. :) I am praying for Selah and your family and some mind opening for some folks at a certain Florida hospital.

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  3. I'm not sure if you received either of the comments I wrote yesterday. (One long one, then another asking you to let me know if you received it. I continue to have problems with my browsers, despite doing everything I can to repair them.
    I had a suggestion for a consultant for you, who is in Florida.
    I'm glad to see that you and Jon are back in fight mode!!! Praying mightily for Selah and for all.
    Love and prayers from Sher

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  4. I'm not sure if you received either of the comments I wrote yesterday. (One long one, then another asking you to let me know if you received it. I continue to have problems with my browsers, despite doing everything I can to repair them.
    I had a suggestion for a consultant for you, who is in Florida.
    I'm glad to see that you and Jon are back in fight mode!!! Praying mightily for Selah and for all.
    Love and prayers from Sher

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    Replies
    1. i didn't get the longer one. it's hard for me to reply also, one thing I hope blogspot fixes.

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    2. Hi, Yvonne,
      I didn't see this until just now...was offline all day, doing a disk check, etc. to try to improve computer function.
      This is the short form of what I wrote the other day. I would welcome a chance to discuss this in more detail, if we can set up a time to talk via phone. If tomorrow evening (actually tonight, Sunday night), would work for you, I have lots of free time, because my husband works 6 p.m.-MN Any time in those hours would be perfect, if that works for you. If not, I will make any time work.
      What I had written was that a Neurologist will only have an idea of the any neuro deficit from the drowning; to assess her ongoing developmental issues re: the institutional autism, which to me is a VERY key issue, you need a Pediatric Psychiatrist on your team. Although autism is a neuro disorder, it is the psychiatric DSM (Diagnostic & Statistical Manual), and psychiatrists specialize in it. You need one who is a trauma expert, with vast experience, compassion, and empathy for the famly, as well as Selah & Sarah. Dr. Denis Donovan, in St. Pete, would be perfect, an absolute gift from God to you! I'm praying that he is still there, and still seeing patients. I met him professionally, but was so impressed that our family went to Florida to see him for eval and treatment when our son was 4. Would love to tell you more!!
      Hugs and many prayers,
      Sher

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  5. My prayers for Selah and your family never cease. I just want to SHAKE those doctors who "don't believe"!!!

    Selah is SO blessed to have you for her parents--her true advocates, just as you are blessed to have her for your daughter. Our kids teach us things we can never imagine until we are in that position.

    God WILL prevail. He will lift you all up in His loving arms and give you the strength you need to continue your daily ministrations for Selah.

    xoxo

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  6. It really seems like Selah is getting overwhelmed when she gets too much sensory input. She had grown accustomed to the previous hospitals sights, sounds, smells etc and was able to flourish. The excess stimulation of this new hospital may overload her sensitive neurological system and cause her storms and also regression...she is tuning out rather than in because all the new stimuli is too painful...It's a coping mechanism. I really think ( and hope hope hope ) she is going to return to her progress when you get home. We're praying for your family. Darla

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  7. One thing I wondered about was the major move in a child with autism causing her to regress and become more agitated. In my experience working with children with autism (Master's in special education), I have often heard of children going through a period of regression after major transitions such as a move. I wonder if the transfer itself may be responsible for the regression and if it will resolve somewhat once she is settled into her home for a couple months. I think when you get her home and make sure her fish oil protocol is followed, she may also do better. My prayers are with her.

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  8. My heart/soul/spirit tells me that Selah is not getting the care she needs and that she may be being abused in some way. Is there anyone that can be there with her? She is a target when she is alone. I really hate to say those things, but will you please think about the possibilities? When you wrote about her arm the other day, I immediately thought of "Nurse Maid Elbow". It happens when a small child is either pulled by the arm too hard or their body "drops" while someone is holding their hands, resulting in a dislocated elbow. It is very common. Many times the elbow is popped back into place when the arm is being positioned for an xray, thus relieving the injury and pain. I so wish I lived near that hospital. I would stay with her when you couldn't be there. Hugs

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    1. We feel good about the nurses she has right now and I truly believe they are doing their best and would say somethingif they thought anything was going on. Her room is close to the nurse's desk and I don't worry about other patients bothering her. there is alot of medical traffic around and eyes. I've never felt like anyone abused her. If her arm were hurt, I think it would have been an accident. She is stiff some days and hard to dress. I've been afraid of hurting her at times because it was hard to move her arms. We are thinking now that it was just her tone because the fish oil had been compromised. I am lucky, I have a friend here who goes in for us on the weekends that we have gone home and I'm sure that makes a difference:)

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