Friday, August 14, 2015

Prayers Appreciated For Antonio

I can't sleep.  So I decided to get up and write.  We have so many huge things going on right now and our schedule is full to the brim with appointments.  I will be sharing some of these things soon but today my heart and mind are full with praying for and caring for our sweet Antonio. 

When we started adopting children with special needs, we did it with the full knowledge that there were going to be times they would need extreme care, be in the hospital, need surgeries and in general just be a lot of work.  We knew there would be times of great joy, times of stress on the family and times of great worry.  These children God blessed us with, are worth it all.  Where to start...???

Antonio has Hypo tonic Cerebral Palsy.  His muscles are so tight, that as he has gotten older, the doctors worry about them snapping his bones when he contracts them.  He is so tight, that it is very hard to dress him and diaper him.  He gets the "generic brand" of Botox shots, in his tightest muscles, every six months or so, to give his body relief from the extreme tone and pain, that tone causes to his joints and body.

His last appointment to get those shots was canceled because Medicaid would not approve it.  We resubmitted and waited.  They finally only approved, if we used the name brand of Botox.  No big deal.  He was so tight by this time we just needed it done.  Tim took him in to have it done and Antonio was so tight and had so many areas that needed it, that the doctor used the full limit amount of Botox possible, for Antonio's body weight.  Antonio had never received that much before.  Right away the next day I started to see changes and slowly day by day Antonio slipped into a non-responsive semi-vegetative state.  As soon as I realized what was happening and that this was from the Botox, we jumped into action.  The doctor wanted to do tests to rule out anything else but I knew what this was.  I am his mom and have seen him in almost every situation from shunt failures to sicknesses.  They drew blood-work to rule out infection.  It came back perfect.  They ordered an emergency CatScan, that Medicaid denied to pay for, to rule out a shunt failure.  I am still trying to get the results from it but imagine it was fine or they would have called and rushed Antonio in for surgery.  This degrade in Antonio's health is from to much Botox or from using the brand name instead of the generic.

The good news is, Botox effects peeks at 7-10 days and we are past that.  So he should not get any worse but he can not move at all.  He could not move much of his body before but could move his right hand enough to play with is Ipad by using his thumb or knuckle.  If we put a marker in his hand he could color.  Now he can not safely eat.  He also can not speak.  Praise God we have his g-tube to feed him till this wears off.  I feel so badly for Antonio.  He sleeps most of the day and night.  He just stares at us blankly when we speak to him.  He is usually such a chatter box.  Once or twice a day he may say a weak yes or no to a question.  Since he was a little boy we could always put him on the potty in the morning and he would do his business for the day.  He now can not control his bowels.  I know deep in my heart he is in there and coherent.  He opens his mouth when we go to brush his teeth and a few times a day he will acknowledge a question we ask him.  But mostly it is just a blank stare. 

We are trying to keep things as normal and upbeat as possible for him right now.  We just talk to him like we always have and include him in everything.  There is absolutly nothing he can do now, so we just keep playing his favorite movies for him.  I also put him in front of his turtle tank and gecko tank, to watch them, like he always loved to do.  I know he is in there.  I know he is thinking but just cant respond, so I went out and bought him a new lizard to cheer him up inside.  Something new to look at and enjoy till he can talk and respond again.  He loves his reptiles.

Please keep Antonio in your prayers.  He is one of the sweetest and kindest, pure souls I have ever known in my whole life.   He normally has such a positive attitude daily, no matter what he is going thru and facing.  A huge smile never leaves that young mans face.  He is flaccid now.  He has always love the Lord with great joy and prays constantly for others.  We are trusting in God for this to wear of quickly and have no ill effects on his future health.

James 5:16  Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.



May God move mightily in all our lives, as we live for Him.

susan



13 comments:

  1. I am so sorry Susan. I don't know why but I've always had such a drawing towards that boy/young man. He looks like such a dear one. I just feel so bad for him, for you and your family. You mentioned that it -peaks around day ... will he get better though? I am praying for you and your heavy heart. I am praying for Antonio. How hard this must be for you to go through. May the Lord be with you. I hope there is something they can do to fix this with him. : (

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    1. Thank you Hadassah. It is very sad to see him in this state every day. There is nothing that can be done but wait for the botox to wear off. I was told that could be as long as three to six months. So slowly he should improve. My concern is that his muscles will weaken from this as he is not using any part of his body. He can hardly hold up his head.

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  2. Oh Susan! We are PRAYING! I cried as I read this. First we absolutely adore Antonio!! :o) What a gift from God he is! Second we can so relate to the Botox and the health insurance crud, altho our Molly went home with Jesus before obamacare so hers was not quite so bad. Right now we have no one with high needs that get rejected. Our group home gals do pay dentist, foot dr etc. But so far nothing we can't afford if I cover their "treats" with my pay! :o) But our boys and Mercy are getting closer everyday to denying important things with rejection/refusal to pay. Julius was refused a $2,000.00 genetics test for a drug he needs but cannot take until his genetics are known to be compatible. UCare and Medicaid said no. We'll make payments, sigh.
    With Botox our precious Molly would become much stiffer when given it than she was without it. At that time they didn't believe us!! But it seems now it is a possible side effect. I agree mom knows! Molly too was incredibly stiff. She had a severe genetic type of Friedrichs Ataxia. As she stiffened her spine and scoliosis pulled her backwards into an opposite fetal position. Once the Dr thought she felt a "mass" in her abdomen- but it was her stomach- it could be felt from the severe posture. Darn Drs were never any help. I know they tried. One Neuro offered Valium, I told him if it's for me to use to deal with the pain of watching her suffer, I'll take it, but it won't help her. Molly was my hero. I'm so sorry Antonio is going through this. Please give him a gentle hug and tell him we all LOVE him! We are PRAYING!!! (((((((HUGS))))))))))

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    1. Thank you Elizabeth, I could use that hug. :) It is amazing how every persons body is so unique to them. How different treatments can help one but harm another. It is called medical "practice" for a reason. Poor Molly really went thru a lot in her short life too. It is so hard to see our children suffer or in need. Very hard to have our hands tied by insurance to get what we know or think they need. With medically fragile children the good days are just amazing to see the miracles and God at work in them. But the hard times...are just hard. We could not make it thru them without God. We are still praying for Jacob as well. :)

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  3. Praying for your sweet Antonio! God, wrap your loving arms around him and give him your peace and comfort. He is your child and so loved.

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    1. Thank you Sherri and God bless you for writing to encourage us.

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  4. We are praying for Antonio and for the whole family. May the peace of God which passes all understanding keep your hearts and minds through Christ Jesus.
    Give Antonio a hug for us and yourself as well.
    Much love,
    The Langilles

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    1. Thank you so very much. Antonio thinks the world of your family. I will tell him you are praying for him. God be with you all.

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  5. We are praying for Antonio and for the whole family. May the peace of God which passes all understanding keep your hearts and minds through Christ Jesus.
    Give Antonio a hug for us and yourself as well.
    Much love,
    The Langilles

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  6. How is he doing Susan? We think about him every day. ((((HUGS)))) and prayers

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    1. Hello Elizabeth, Thank you for asking. He still cant move his body much but yesterday starting to mumble at times and has smiled briefly a few times. I do believe the botox is wearing off some as he had not smiled since this all started or spoke. Thank you so very much for your prayers. It means so much to us and him. Praying for you all as well and little Jacob. Blessings.

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  7. Oh Susan- I hope he will recover soon. We talk about him every day. He sends sunshine to everyone who sees him!
    I am so concerned for Hadassah now, I had not even realized the fires were that close to them! I'm sure you saw her blog.
    ((((((((HUGS)))))))))

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    1. Antonio is improving in his ability to speak every day. I know it is all the prayers people are offering up on his behalf. Thank you so much. :) God is so good. He answered yes and no to a few questions appropriately yesterday! But still just stares at me when I talk to him and usually does not respond. He could not even talk at all and drooled constantly a week ago so Praise God this is great progress. And The children were talking about the new Shaun the Sheep movie that just came out and Antonio smiled and said go. So Tim found it playing in a town close to ours and is going to take him to see that movie tonight if he is up to it. His body is still paralyzed and he is not smiling much at all but we are seeing progress. We had a bad cold go thru and praise God he did not get it as he cant cough right now. And believe it or not, we now have a 24 hour tummy flu going thru and Glory to God he has not caught it. You know how it is...often when it rains....It pours. Glory to God for his mercy and grace and for good friends like you who stand in the gap. We are also praying fervently for Hadassah and her family. For Gods protection. They have also been thru so much lately. God be with you all. Love and prayers.

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