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Tuesday, April 30, 2013

The Hardest Conversation Ever

So, we checked into LeBonheur Children's hospital at 5:30 yesterday morning for Korban's video EEG and MRI.  We were supposed to do the MRI first thing yesterday morning, but Korban got nervous and threw up while we were waiting.  He hadn't had anything to eat since around 10:00 the night before (he wasn't supposed to eat or drink after midnight) but the nurse was concerned because he was throwing up.  They have to sedate him for the MRI and it's dangerous to use sedation if there is food in the stomach, so they were worried his stomach wasn't totally empty like it should have been.  So we will do the MRI at the end of our hospital stay instead of the beginning.  Better safe than sorry.

After that, we checked into his room and they got the EEG leads hooked up.  We were really hoping it wouldn't be too traumatic.  He's had several EEGs before, and it's not easy to hook up.  He's very sensitive around his head and face, so you can imagine how it feels to have a bunch of little electrodes glued on.  The lady who hooked him up was excellent.  She came and played with him for a long time before she even talked about hooking up the EEG.  She let him see her equipment and how it worked.  He especially like the "blow dryer" part that they use to dry the glue.  The dr even approved for Korban to have a dose of Benadryl to help calm him beforehand.  It might've slowed him down a little, but he didn't fall asleep until afterwards and put up quite a fight during.  It's really hard to hold him, but it's not our first rodeo, so we managed.  Several nurses came in to help us.  At one point, one of them walked in and took one look at the scene in front of her and exclaimed "Oh, Lawd!"  My sentiments exactly!  Totally cracked me up.  I love the South. 

It was quite a dramatic (and loud!) scene for a while.  At the end, when all of the electrodes were on, they decided to give poor Korban a break before wrapping his head in gauze to keep everything in place.  One of the nurses went and got him a popsicle as a reward.  It was one of those big, rocket shaped pops.  He loves Popsicles, but he didn't even lick this one.  At soon as she gave it to him, he looked at it for a long moment and then broke it over my head.  Seriously.  The rocket pop broke in half.  I must have a really hard head.  Brad tossed the broken popsicle in the trash and I asked the lady if the video was running already.  She assured me that it was.  I asked her if we could get a copy of it for America's Funniest Home Videos.  Because the way I look at it, if I'm going to have a popsicle induced concussion, I might as well make some money off of it.  Also, I no longer like popsicles...

Immediately following that, Korban passed out asleep on Brad and everyone and their grandmama came in to get Korban's developmental history, medication list, family history, and I think maybe my bra size.  Brad asked me "Can't they just talk to each other and share this information?"  I told him that's not the way it works and they were just doing their job.  But it seriously was busy for a while.  Every time one person left, I would get up to go to the bathroom and another person would be knocking on the door before I could get across the room.  But we got all of that settled and Korban snoozed right through all of it.  We even had someone from neuro-psych come talk to us and explain that they were going to do some cognitive testing on Korban while we were here if that was ok.  Of course, we were fine with it.  That's why we are here--to find out any information that will help Korban feel better and do better. 

Then yesterday afternoon, while Korban was STILL sleeping, his neurologist who will be caring for us during this stay came to meet us.  Since Korban was sleeping, he asked me to step out into another room so that we could talk without us bothering Korban.  So we did, and he talked to me for a long time.  He's incredibly nice, and seems very knowledgeable, but it was not an easy conversation.  We started out by going through all the history and talking about why Korban was referred for the VEEG.  I explained that his doctor was worried that some of the rages he has could be caused by seizure activity.  He said that is very rare, but it is possible.  I told him some of the things that have been going on at home, and gave him some examples of Korban's aggression and impulsivity.  He started asking me questions like how often do I have time to myself, how much time do I spend with Selah without Korban, and how much time me and Brad got to spend together as a couple.  I tried to answer as honestly as possible without being defensive.  I know it's important to "take care of myself" and spend time alone with Brad and with Selah, but it's so much easier said than done.  And I explained all my reasons to him. For one thing, Korban does not willingly stay with very many people.  He even screams and cries for us the whole time we are gone when he is with his grandparents, for goodness sake.  Also, it is very hard to leave Korban with someone and come back and find that person bloody and bruised.  A few weekends ago, Korban and Selah stayed with my mom for a few hours on Saturday so me and Brad could do some work at our house.  When I went to get them, Korban told me right away that he had bitten Nana.  Sure enough, she had two distinct bite marks on her arm.  The skin was broken.  She was upset that he told me, but I explained to her that we need to know these things.  The next day, Brad's parents kept the kids for a little while so that we could teach a small group at our church.  When we got back and were loading the kids in the car, Selah informed us that Korban had hit Mammaw and broken her glasses.  Brad went back in and asked about it and his mom started crying and said she didn't want us to know because she was afraid we wouldn't let them keep him anymore.  I told the dr about all of this, and how I feel irresponsible leaving Korban with people when I know he could hurt them while I am gone.  He said that he understood, and that is was reasonable for me to worry about that, but I can't do it all myself and that they know what they are getting into.  It's just so hard. 

He also told me that it's very hard to treat aggression in children that have severe behavioral problems.  He said the few medications that they have to treat it don't work all that well.  This is true.  We've been on these medications for years, and they only take the edge off.   The edge is substantial though.  He was happy to hear we were getting ABA therapy for Korban.  But he wanted me to know that even if we do everything we can possibly do, there is a chance the aggression won't improve.  And Korban isn't getting any smaller, he pointed out.  He wanted to know what our safety plan was.  I didn't have a lot of really excellent answers.  He pointed out my size (I'm petite) and that we have a three-year-old who will always be younger than Korban and vulnerable to his attacks.  Reminded me that I have to protect her no matter what.  Then he asked me if Brad and I have discussed the possibility that we may have to institutionalize Korban if his rage gets to the point that he cannot safely be maintained in our home.  And for the first time in our whole autism journey, I absolutely broke down in front of a dr.  I didn't cry when he was diagnosed.   What was the point?  We knew he was autistic for a year and a half before the specialist actually told us.  It wasn't brand new information.  We weren't devastated.  Autism isn't the worst thing in the world.  It was just new hurdles to cross.  We were confident we would cross them.  So many things have gotten better.  Speech, sensory issues, etc.  They still need work, but there is improvement.  But not the aggression.  We've always been told "He's just three, it'll get better. He's only four, this will get better.  He's five, it will get better.  He'll grow out of some of this.  His aggression with lessen as his ability to communicate improves.  Just ignore it.  When he sees it doesn't get  your attention, he'll move on to something else."  And now here he is, seven years old, and a dr telling us that if things don't improve we may not be able to keep him at home.  Now THAT is devastating.  It's unthinkable for me.  I can't imagine doing that to my child.  I've always scoffed at institutionalization and thought I would NEVER do that.  And I still feel that way.  But if the aggression doesn't get better, what ARE we going to do?  How will I keep Selah safe?  How will I keep myself safe?  How can I keep Korban safe from himself?  The dr said "Remember, you need to take measures to protect him from doing something that can't be taken back.  Something he will spend the rest of his life regretting."  I guess I understand what he means.  Even now, Korban will hurt us, or break something and then sit in my lap and cry about it.  Sobbing over and over "I hurt mommy."  On Sunday he cried and cried because he threw the radio.  I tried to console him while he wailed "I broke it to pieces!"  It's pitiful really.  He has a conscience.  He regrets doing bad things after he does them.  He just isn't able to actually stop himself before doing it.  But we have to get to that point somehow.  The dr also told me that he wants to make sure we don't blame ourselves for Korban's issues--that nothing we did caused them.  We've both worried and blamed ourselves.  I had the placental abruption while I was pregnant, which I've always strongly suspected was the major causative factor in his autism. The geneticist found that Brad has a small chromosomal deletion which was passed on to Korban, and Brad worried that tipped the scales into somehow.  The dr literally said "You need to throw all this crap out the window.  Look at your daughter.  She's healthy.  It's not the combination of you two that made him have these problems.  These things just happen.  You're doing the best you can given your circumstances, which really are kind of terrible right now."  All this while I just sat there and cried.  Talk about a dose of reality.  And I know I needed to hear everything he said, and he said it in such a nice way.  But seriously, hardest conversation I've ever had in my life. 

After all of that, he told me he wanted to tell Brad the same things he told me.  Korban was still sprawled on top of Brad asleep when we went back into the room, so the dr explained all of this stuff to Brad.  When we got to the part about us making a plan, and that an institution might be a possibility if Korban was a threat to our safety, Brad turned and looked at me with tears glistening in his eyes.  I saw the same pain I had been feeling reflected there, and for a moment I almost wished that I could go back in time to the night Brad asked me out and tell College Brad to run from College Me.  Just to have prevented that look on his face right then.

I just felt broken.  I kind of shut down the rest of the evening.  When Korban woke up, he knew something was wrong with me but he didn't know what.  He's very sensitive like that.  He asked me if I was sad--my face was still puffy from crying.  And he slipped his hand through my arm and laid his hand on my shoulder and said "I love you Mama."  How do you even think about giving up a child like that?  In some ways I felt like the dr had just handed us some sort of terminal diagnosis.  Because I feel like I may lose my baby and I'm honestly terrified.  Please know I'm not comparing our situation to a parent who actually has lost a child because I know that is far worse, but I am saying that I'm grieving right now and very very worried.

The dr came back in and talked to us this morning.  Nothing abnormal has shown up on the EEG so far.  Most of the lab work they have done came back normal, except his iron and vitamin D levels are slightly low.  He needs extra vitamins.  His liver enzymes are elevated due to the Depakote (seizure meds), so we are stopping them immediately.  Since we are in the hospital we can go cold-turkey like that.  His liver will repair itself with no other treatment needed.  Depakote has a lot of dangerous side effects, and I'm glad to be done with it.  If no further abnormalities are seen on the EEG, we will be able to start Trileptal once the Depakote gets out of his system.  It's used to treat seizures and as a mood stabilizer, and has a very low risk of side effects so we are hoping for good results from that.  He reiterated that it's not his desire at all that Korban be institutionalized and that he isn't recommending that right now.  He said that Korban will surely be happier at home, and that he wants us to be able to keep him there but his job is to look out for all of the family and not just his patient and that he did have some concerns about our safety. 

Korban had not had an actual "fit" while we had been here and the dr said he was needing to see that.  He said that he doesn't want us to get beat up, but that he does need to see Korban extremely upset so that he can see what his brain activity looks like during that time.  He got his wish this afternoon.  We went down to the playroom.  It's also video monitored and they can hook up the EEG packs to go "wireless" while we are in there so the pack doesn't have to be plugged in and the kids have a little more freedom of movement.  We spent some time in there yesterday afternoon and Korban really enjoyed it.  So we went in there today and there was another little boy in there about Korban's age.  He really wanted someone to play with.  He asked Korban to play hide and seek with him, and Korban said no.  So he asked me, and his mom spoke up from her seat and said she would play with him when she finished deleting her email.  He asked her how many she had left, and she said 2,000, so I guess he understood it was going to be a little while.  So he decided to play tag with Korban.  He ran up to Korban and tagged him with both hands on the chest.  And Korban knocked him flat on his butt.  Sigh.  His mom looked all upset and of course the kid didn't like it any.  I explained that Korban is autistic and doesn't play like other kids sometimes and that I would keep a close eye on him.  But then the nurse came in (I guess they saw it) and asked Korban if he was playing nicely and the other little boy piped up and said "No he's not!"  So I said I would just take Korban back to his room, and the meltdown ensued from there.  When we got him back to the room he threw an open bottle of orange soda across the room, tore the pillows and blankets off the bed and threw them, screamed, and hit me and Brad.  Later when he was calm, I was sitting beside him on the couch while he was eating his snack and he grabbed my hair with both hands and just started yanking.  Brad had to pull him off of me.  And we've had several other episodes like that.  Not a fun afternoon, but maybe the dr saw what he needed to.

If he did see what he needed to, we will do the MRI in the morning and probably be discharged sometime tomorrow afternoon if there are no further problems.  We will hear from the psychological testing, MRI, and the chromosomal microarray at a later date.  So for now we wait and pray.  Please pray with us that God will either remove Korban's anger and aggression or show us a better way to deal with it.  Pray that my little family can stay together.  I never thought that would be an issue but I'm learning that you cannot take things for granted.  Pray for safety for my sweet Selah and an understanding heart.  I'm feeling pretty down right now and I know Brad is too, so pray for us that this will make us stronger and that we will be able to effectively parent BOTH of our children; that we will be everything they need us to be and that God will fill in the gaps that we, in our frail humanity, cannot. 

3 comments:

  1. Oh, Melissa, I am so sad for you all and weep for your pain:( I don't have any words of wisdom, but just keep holding on to God and He will walk you through this. Much love to all.

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    1. Marie, thank you so much. We love you!
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