The story behind it all

I feel like I need to back up a little in our story in order to bring everyone up to speed with where we are at today.  I realize I have forgot some crucial details as to what landed us where we are.

Saturday night, we were able to go out to dinner which we rarely do anymore.  Nathan did really well at dinner and was not having any issues.  Once we were leaving the restaurant he started talking about Star Wars.  As most of you know, Nathan becomes obsessive about certain things and on this particular day, it was his light sabers.  He had brought one in the car and wanted to show our guests his toy.  He started to become agitated that night after dinner.  We went home and put him to bed later than usual around 9:30 pm.  He would not go to bed.  He just kept talking about his light sabers.  He kept getting out of bed and coming into our room in a very agitated state.  Each time, we would take him back to his room and he would say “I forgot how to fall asleep” (something he has said before and we think this is a piece of the anxiety that goes along with Batten) or “I don’t think I will be able to stay asleep all night”.  He was up until 3 am that night and at one point even fell down the stairs.

Sunday, he was up very early around 6 am.  Not a lot of sleep for him.  He was very upset most of the day and talked non stop about Star Wars.  Every five minutes he wanted to be a new character and would get upset if you called him the wrong name.  It was a very long day filled with lots of screaming.  Another problem Nathan has been having is when we took him off a medication recently, he began to hit himself in the forehead.  I am not talking lightly tapping his forehead, I am talking slapping himself and hitting himself that he has bruised his head and given himself bloody noses.  Pretty concerning behavior, but again, we have lived in a constant state of chaos for six years that we just figured this was a rough patch.  This night he went to bed very late and had a hard time staying in bed as well.  He also maybe only ate a couple of bites of food all day.  Very unusual for Nathan who likes to eat multiple meals throughout the day.

He went to school on Monday and Tuesday and there was nothing to report from the school regarding negative behavior, but when he came home he would just be in a rage.  I would not be able to get him to stop hitting himself and screaming.  He will scream for hours on end.  Again, behavior we have seen, so just thought it was more of the same and it just was really bad right now.  Another two nights of poor sleep and very little to eat.

Wednesday we had our regular 6 month follow up with the geneticists who diagnosed Nathan.  When we got to the appointment, we knew it was not going to be a good one.  Nathan did not want to be there, and he was letting everyone know.  The doctor came in and to be honest, I do not remember much of what we talked about medically, because the conversation quickly switched to him suggesting that we take Nathan to the emergency room to be admitted.  He said that this behavior was quite concerning to him and the fact that he has been doing this for sometime he thought that Nathan and all of us were at our breaking point and he needed to get help.  The first suggestion of admitting Nathan would have meant inpatient in the nueropsych unit.  That means taking Nathan and dropping him off and getting to see him for 1 hour at lunch and 1 hour at dinner and that is it.  We had to do that three years ago and I swore I would never do that again.  That for Jay and me was not an option.  He suggested that they may be able to put him in a regular room in the main hospital to be evaluated.  He left the room and called the Special Care clinic and talked to the head of the department to see what her thoughts were.  Jay and I had about 5 minutes to make a decision.  He came back in and said that they were in agreement that Nathan needed to be taken to the main hospital immediately.  He said it was urgent, but not emergent.  He told me to go home and grab some things to spend the night and get him there.  To be honest, I was much more open to the idea than Jay.  We both want so badly for him to feel better, but we did not have a lot of time to make the decision and Jay needs more time to think on things than I do.  That also gets me in trouble sometimes. 🙂

Jay left for work and I drove Nathan home to get some things for us.  I explained to Nathan where I was taking him and he was ok with my response.  When we arrived at the Emergency Room, it was quite the ordeal.  Nathan likes to feel how tall everyone is.  Let’s just say the security guard did not appreciate the idea of this as much as Nathan.  He plopped down in the middle of the waiting room and started screaming.  From that point on, we had an escort everywhere we went.  We got into a room and the Doctor came in and discovered that Nathan had a perforated ear drum.  I remember him saying two times over two days that his ear hurt but there were no other symptoms to go with it to make us think anything of it.  However, this is crucial information as this is the ONLY thing that we can think of that would have changed that would have made him not want to eat or drink anything.  We are really hoping that it is that simple.  That something so easy as an ear infection unfortunately made him have such a bad reaction.  Time will tell.

About 6 that night we got moved to a room and Jay was able to come from work.  It was so late in the day, that we were not able to see any doctors.  I stayed the night with Nathan and it was rough.  He literally screamed until 1 in the morning.  He starting hitting again, so they had to bring in Mental Health staff to help diffuse the situation.
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The gentleman that came in was wonderful with Nathan and was able to help.  In one hour they had to give him three different medications to calm him.  Finally on the third try it worked,  he passed out.  I went to sleep and we were up at 6 with a couple of doctors in the room.  Nathan quickly became agitated and at one point I counted 14 people in his room including security guards.  I will say I know Nathan.  He does not want to hurt anyone, EVER, but he gets frusturated so easily and it can appear that is what is happening.  It was so hard to stand back and watch them take over and have no control.  I needed Jay there.  I had said the word Batten many times, but did not feel like anyone heard me.  They wanted to put him in a POSE bed.  For those who don’t know, it is a bed with zippers all around where you can’t get out.
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I told them no. I kept saying this is a child with a brain disease that has no control over what he is doing and I will not allow him to be restrained in anyway or feel punished for something he can’t control.  Jay had made it very clear to me as well that they were not to restrain him.  I finally called Jay in tears and told him he needed to be there with us.  He drove straight over.

Thursday was a blur of doctors coming in and looking at Nathan, but nothing was really done in terms of tests.  There was talk at one point of doing an MRI and EEG, but the idea of putting him under anesthesia is very different for a kiddo with Batten and having him tethered to an EEG for 24 hours was a difficult idea.  The neurologist felt that they knew the tests would be abnormal so why bother putting him through any more trauma than need be. We were able to get him to eat a decent dinner which was the first real food he had in days.  They were able to tweak a couple of medications that helped get him to sleep.  Jay did not come prepared to stay the night and because he had Doctor ordered 24 hour two to one supervision we felt comfortable coming home to try and get a good night sleep to tackle the next day.

When we arrived on Friday, he was again very agitated.  He was anxious as to where we were and when we arrived I think it was too much for him.  They would have to put these mittens on his hands that had padding on them so that he could not hurt himself.  We had asked the Doctor and nurse if we could take him out of the room to get him some fresh air and get him out of the room that he had been confined to for 3 days.  The nurse immediately said that it would not be safe to allow him to leave his room due to his behavior.  We asked what needed to happen in order to allow him to go to the basketball court.  She indicated that she would check into it with the Doctor and let us know.  The Doctor came and found us and asked to speak with us in the hall.  He said if we could be patient, he would try to expedite that.  We all agreed.  He went in to Nathan’s room and told the two male Mental Health workers and his nurse the plan.  It was about 11 am.  We found out that the basketball court did not open until 2.  So we had some time to get him to calm down.  We had not mentioned it to Nathan at this point.  However, we know our son better than anyone else and knew that a change in his environment was what he needed.  He was so good that afternoon and definitely warranted a trip out. 
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About 1:45 Jay started to get him dressed to go.  We brought a wheelchair in his room and the nurse came in and wanted to know what we were doing.  Jay told her the plan and she said we were not allowed to do that and she was getting the charge nurse.  Jay went in the hall and spoke with the charge nurse.  She said she was not aware of any arrangement and that an exception would have to be made any time someone has Mental Health supervision.  Jay asked her to get her Manager and come back and speak to him.  He waited 45 minutes for someone to come and finally he had to go find her.  She said, “Sorry, it is not going to happen, but we will allow you to walk 4 rooms down and look out the window”.  That would not have done Nathan any good as he CAN’T SEE OUT THE WINDOW!! She then asked “Are you going home tonight?”  We felt like that was very insensitive and was acting like we were a burden on the floor.  We made the decision to leave that night and come home and be comfortable in our own home and beds and deal with whatever we had to deal with here.  We were discharged around 8 pm.

We have had worse weekends and we have had better, but I will say that we were better off being home.  We were given some new medications that help short term, but part of Nathan being in day treatment is to assess his medications long term.

Day 1 his back and forth sheet state he had 20 occurrences of self harm.  When we got in the car, he was very angry and I counted 97 times that he hit himself.

Now, here is the exciting part.  Day 2 they said he had a really good day and had NO occurrences of self harm and when he came out today he had about 3 minutes of anger and that was it.  We had a pleasant drive home and he was funny and smiling and laughing.  We have not seen or heard that in what feels like forever.  It has been a great night with him.  We are so hopeful that this program can help connect us with a child psychiatrist and help with behavior therapy and getting set up with palliative care.  Those are our main goals.  The program has reached out to the leading Batten expert and received some medical suggestions that we will be implementing, so we are hopeful.  Just when we think we have run out of hope, we find it again.

I could not end this without thanking our community.  Some very amazing people have come together to help our family out.  We have come home to a meal every single night since this started.  We have been able to leave a cooler on our front porch and people have been leaving meals in there. We cannot begin to express our gratitude for the outpouring of support we feel.  I cannot tell you what a tremendous help that something as simple as a meal has been.  I have been unable to cook for so long due to the constant interaction that Nathan requires and this has just been a plain lifesaver.  We do not even know who is leaving the meals, but from the bottom of our hearts, we are forever grateful for everyone’s generosity.

Thank you for everyone’s love and concern for our family.

Jay & Stacey

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11 responses to “The story behind it all

  1. Dear Family, our hearts continue to hold you close and pray for Gods grace and strength. No one can imagine what you are dealing with every day. We just know you give Nathan everything you have and search for more help for him at every turn. Constant prayers for you all.

  2. You guys are doing everything you can. I will be praying for you all and the doctors and nurses for compassion in this difficult time. Love to all ❤️

  3. Hi, this is Stacia Kilburg from the Sensory Friendly room at Southeast. Thank you for sharing your heart and the details. My heart aches for you and the pain you deal with daily watching Nathan struggle. You two are amazing parents, cling tight to the Lord. I am praying for each of you daily. I know the Lord hears our prayers and the way he answers is in His timing. So hard. I only have spent one morning with Nathan and he stole my heart. He is precious, we all fell in love with Him that morning. Continued prayers faithful servants. You are serving God’s Kingdom in one of the mightiest ways! God Bless!

  4. Thank you so much for keeping us updated. I feel myself so full of emotions reading this and wish so badly I could just wave a magic wand. The physical and mental tole this is taking on you is profound. I love Nathan so much and it just makes me cry to see him have to go through any of this! He is just a boy! Darin and I will always be here for absolutely anything you need! I mean anything!

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