Wednesday, December 19, 2012

Day 45 Fish Oil study~what a day!!!

Today Jon and I split our time so I could stay here and do laundry and repack some things since we are going home on Saturday.  He took the morning shift.  Selah was agitated and unhappy during therapy.  He came home for lunch and stayed with the little kids while I took the boys to see "The Hobbit" finally.  I dropped them off and they got the last pair of Hobbit 3D glasses, they were so happy

 
I went to spend the afternoon with Selah and went to all her afternoon therapies.  She got through the first 2 ok and then by number three she had had it!  She stiffen and her heart rate went up to the 130s.  I saw her arm/hand starting to shake and I was freaking out on the inside because that looked like the beginning of storming!  The therapist carried her back to her room and laid her down and her heart rate slowed down within 5 minutes.  Then she put a "weighted blanket" on her....oh my Lord....  Selah freaked out!  Within a couple of minutes her heart rate was up to 180, She started shaking all over and her arms started to come up.  She was also breathing weird, like a whistling noise.  I ran for the nurse at the same time her alarm started sounding and everyone came running.  By then her heart rate was in the 200's.  I had already taken the blanket off.  One nurse went for the airway (although her oxygen was at 100% she did NOT sound good)  They called for the respiratory team.  I told the charge nurse I thought she was storming and asked frantically for her meds!  The nurse went to get the meds and by the time she got back, Selah had her heart rate down to the 170s and lower....within 15 minutes it was all over....then my legs started shaking!!!  So I asked them not to give her meds and they didn't. 
 
The consensus is that it was not a storm.  It was an "event" that involved some sticky gunk in her throat as well as her being upset from therapy and the blanket.  It looked like a "storm" but she did not sweat, she brought herself down to normal so quick and her blood pressure was normal when they took it.  So it could not have been a storming issue, thank God, after 45 days it would be a shame for that to have happened 
 
 
Her one med that helps control her BP and the storming was lower today and the new drug that is supposed to wake her up was raised yesterday.  Perhaps this is Selah becoming more aware?   It scared the crap out of me!  We'll discuss her meds tomorrow.  We are leaning towards giving her a little more time to see if she can adjust before putting her back to her original dose.  We know that she will be here until January now as they work on her meds.
 
This episode scared me today...all I could think is what if we were home and that happened and I was alone with her and the other two little ones???  After it happened, I called the home nursing agency to see if I could find out how many nursing hours she will get.  I didn't talk to our worker today but he will be in tomorrow.  Please pray that we will get 24 hour nursing.  I can not imagine the  responsibility that lies ahead.  I've dealt with alot before but this is way out of my league!  I remember when Sam was coming home from the NICU on 3 machines I was very confident and stupid, all I wanted to do was to get him home!  Stupid me!  At that point, with the insurance we had we couldn't get nursing at home and I naively said that I didn't care.....  Since then I have said I would not live that first year over for $1 million dollars....Now it looks like I'm going to have to relive that year and then some....     I will be honest I am scared to bring her home.  I'm not afraid of Selah but I'm afraid of her dying!  I pray that we get 24 hour nursing!  I know what we went through with Sam and he had less issues than Selah does.  Dear God it scares me to death!  Being a parent is a huge responsibility, being a parent to a child with such special needs is overwhelming responsibility and when you add in there 4 other children, 2 who are severely handicapped and a husband that works two jobs....  I truly do not know how we are going to do it.  We want her home with us and feel that is the best for her overall and it is best for us, but it is scary.  She was fine for the rest of the day and so far tonight.
 
So we don't know if today was good or bad....is she waking up more and this is part of the agitation that would naturally come with that?  But if she were waking up more it would seem she would at least be doing the things she was doing in NY and be more involved in her therapy.... The thought has been raised maybe, just maybe, she is not cooperating because she is unhappy dealing with new staff and a new place.  That would almost suggest more cognitive skill than we could imagine at this point but who knows.  She certainly isn't sleepy or unaware of what is going on.  Having institutional autism has to play in also.... We don't know what to think and try not to analyze it too much, only time will tell....
 
When I am down, I have to remember she has come so much further than anyone ever expected...she is aware of us, reacts to things she doesn't like in an obvious manner and is not "just a body on a bed"  I am thankful for that!!!
 
Please pray, she has regressed in many areas, no one knows why and now this...we are heartsick but we also realize that there are so many unknowns with her that this could be something going on good (as far as her being more aware)  I just do not know.  But I can tell you we are sad and worried.  Please pray!!!! 
 
 

13 comments:

  1. {{{{{Yvonne}}}}} You have had such a hard day...my heart goes out to you. Surrounding you with LOTS of extra love and prayers tonight. Sounds as if the "Sticky gunk" in Selah's throat set off a panic attack, on top of disliking the therapy. The feeling of not being able to breathe right, even for seconds, is terrifying for anyone. How GREAT that she was able to control it without meds, once the precipitating factors were removed. As terrifying as this was for you, it sounds like good news to me, from my safe distance hundreds of miles away, and listening with the nurse part of me, not the Mom part!
    It would be ideal if you could get 24 hour nursing care. If the facility knows how to document, this should be possible. Does Selah qualify for Medicaid? If so, please check this link: http://mchb.hrsa.gov/epsdt/overview.html One of the agencies where I used to work contracted with EPSDT, and they were often able to supplement hours obtained through other programs. If Selah doesn't qualify, perhaps they can refer you elsewhere.
    Praying...praying...praying for Selah and all of you. I'ts OK to be sad and worried, but please do not lose hope. Please call if you need to talk. If you're reading this Wed., I will be up until after MN. You don't need to post this...I just don't have an e-mail for you.
    Love,
    Sher

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  2. We still have her picture on our frig and we still do continue to pray for her. You know, that was my thought yesterday, that maybe she just doesn't like the new place or is unsure of all the new faces or surroundings. Maybe...praying she gets back to where she was in NY very quickly and then some!

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  3. Oh, Yvonne! What a day for you and for Selah! I am praying and praying. I will be away from the computer for a couple days but will be very anxious to check back as soon as I can and see how things have gone. Praying and praying!!!

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  4. Hi Yvonne: I would not discount the idea that she is aware of the change in her surroundings, staff, meds, etc. and is reacting to it. I know it must be terrifying to think about having her home. It also seems as if, once she was able to settle in, she might do much better than in an institutional setting. Prayers are with you.

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  5. HI again - another crazy idea - I have heard you talk to her in the video. I also would not discount the possibility that she hears and understands some/much of what you are saying. Did anyone prepare her for the blanket? It might be a positive feeling, but it might need some verbal work ahead of time. In addition to prayer, I would keep my mind open about possibilities, as we often seem to think of a body in a bed and treat a person that way when they may be (becoming) more alert and just unable to express themselves verbally, but they are in there and have their own ideas about things.

    My husband's sister is brain injured. She can no longer speak or walk, but when she met our daughter and I gave her some of her mother's things at the funeral, she understood what we were saying. She rages when she can't express herself but she is definately in there with likes, dislikes, but little way to express herself.

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  6. Thanx for ur post nd giving us a hugefull information, plzz tell me wht is the main benifit of FO & WP .. ???

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    1. overall it brings down inflamation in the body which is helpful in many ways. Inflamation causes all kinds of issues, heart disease, diabeties etc... in Selah's situation itbrings the inflmaiton down in her brain which allows it to heal

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  7. Praying that whatever it is that is going on, that Selah would be comforted and know in her heart and her mind that she is safe and loved. Asking God to remove any fear that might be causing her to regress in the face of a new environment and new staff. So thankful that yesterday's "incident" does not seem to be a storming episode after all of this time. Continued prayers for your whole family and for all who are caring for Selah daily. (((HUGS)))

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  8. I will agree with bytheriver's comment above. It seems it was pretty well established what she could and could not do in NY, and how far she ha progressed. I also theorized that the 'newness' of the place and the staff may have her on edge a bit. Not familar surroundings or same voices that she would hear in NY. I am no expert but it would make sense to me if that was the case. I also agree with bytheriver that perhaps her episode was more of a irratated response to what was going on (with her therapy and the blanket). If she is truly becoming more aware, I imagine this is her only way to express herself. (I pray that is the case). I would think if she has truly regressed and this was not a 'storm' that she would have no clue nor care of what was going on or if a blanket or anything was placed on her. The fact that she got 'upset' then came back to normal, seems more like a body response to be stressed and dislike of the surroundings, which we all do from time to time, which would them seem like she definately has an awareness of what she likes/dislikes and what she can tolerate. I pray for her everday and her progression.

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  9. I agree with some of the comments I have read before getting to this box to comment in: new surroundings and her not knowing the people was the top of y list of why this may be happening and the fact that she can't talk about her fears and frustrations....
    I will pray that they will work with her and that the Lord will show them who HE is when they are working with her if they don't know the Lord....
    Love from NC
    PS, and I will continue praying for you and Jon and the children, too...

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  10. My family and I are praying your entire family and Selah. I also wondered about her regression. I have worked with severely DD as well as PTSD and trauma children and adults for years. Is there any similarities between the rehab and the orphanage. I wonder if any of her regression is due to the trauma of the move and the new environment. I am not there so this is pure speculation I just want to throw it out there. The PICU would have been much different but many rehabs are white concrete walls and much more similar to the institutional setting that she was in compared to the PICU. I wonder if some of her regression is PTSD related. Especially the "abandonment" of leaving her familiar setting and people. It could be a coping mechanism going deeper into herself. I pray Selah starts progressing as she was in NY. My thoughts and prayers are with you.

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  11. Definitely praying honey ((((Hugs))))

    I can't imagine what *my* response would be if I woke up from a coma in a strange place, strange people, tubes, etc! I'm sure I would freak out! So try and take some comfort in seeing this from her viewpoint and just keep reassuring her that you (or your husband) is there and they are there to help her.

    No wonder you feel so overwhelmed....I know how I felt when I first sent my son to school with his anaphylactic food allergies, terrified I'd get a call that he'd had a reaction to something.....I had so much anxiety back then and even at the age of 10, I still worry if he's doing something new!

    I'm glad your sons got to see The Hobbit! My son is excited too (he does a pretty good imitation of gollum lol). I wish I could see 3D movies but my eyes are too wonky.

    Take care mama, and just keep breathing. The God who watches the sparrow is definitely with you and your family. xoxo

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  12. Hallo-I'm a reader from Pretoria South Africa. My first thought about your posyt today was that the he weighted blanket might have reminded Selah about the presure of the water when she drowned--maybe that with the gunk in her throat, might have reminded her of that day? I pray that she will continue to do new things and more!

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