“I am so proud of ME!!!”

proud

I promise that you all will not have to read about every single test DC has to take but this one was a huge accomplishment for him – HUGE!

A year ago…. even a couple of months ago, I would never have attempted an MRI with out the benefit of sedation (his, but these days it might be beneficial for me too ūüôā ). Never! It just¬†would not even have been a consideration.

He has been through so many appointments and tests lately that I was really hoping that he was just getting used to it and maybe, possibly he would be able to cooperate. I mean he had blood drawn Рthat was major. Even the EEG was quite the accomplishment for him. Knowing now just how long all of these tests take to schedule to begin with, I did not want to wait the extra week or two or three for an appointment to sedate.

I talked to him about it the entire week before the test. I showed him pictures, I showed him videos. I explained that he had to do nothing else but stay still. There was nothing that was going to hurt or pinch.¬†They were going to take pictures of his head while he was inside the machine. I have only had one MRI myself, for my arm/shoulder. It wasn’t fun but it only took about 20 minutes, so I was hoping that after all he had already been through he would be able to manage it.

We arrived at the hospital in the morning. Grandma and DC read a book while I filled out pages of paperwork. He did not seem nervous at all.

reading in the waiting room

He started getting anxious as soon as the nurse came to say¬†that they would be calling him¬†in shortly. Lisa, our “guide” for the test, came to get us. We went into another room to answer more questions. DC was now moving into¬†“close to extreme¬†anxiety mode” and I am sure that Lisa was now concerned that he¬†was not going to¬†be able to do this. This is when she told me that there would be an IV involved………

Lovely Рnow I am a big fat liar. No one told me about this. I never had any sort of IV when I had my MRI. Maybe I was supposed to know this but seriously, up until a few months ago neither DC or I have never really ever had to have any kind of tests like this so I really had no idea. Of course I have had blood work and the one MRI and maybe an x-ray or two , but other than that there has been nothing for either of us.

Just so DC¬†would not think I¬†had lied to him and because whatever the consequences, I always tell him the truth and what is going to happen¬†– I explained that he would have to have an IV in his arm, not like¬†the needle¬†they used when¬†they took blood but just a little poke like when he was in the ambulance. I told him that¬†I was sorry I didn’t tell him before but I didn’t know. No one told me. He seemed all right with that explanation but I could see he was getting even more nervous. She told me that they would take pictures for 30 minutes, bring him out to give him the IV for the last 10 minutes of the MRI.

40 MINUTES!!!! Now I was absolutely¬†sure we were done. I was positive this was not going to work. She told me the worse case scenario¬†if he tried and just could not¬†stay still that long would be “conscious sedation”, but…. we would have to make a new appointment and¬†come back another day.

Thankfully, he did not have to change out of his clothes because that would just be something else for him to obsess about. He did have to¬†remove his glasses – not happy. I was able to go into the room with him and hold his hand. It was torture standing there watching him. He had a difficult time staying still, but he was still enough through enough of¬†the test¬†that they were able to get¬†what they needed. At one point I did make them stop and take him out. I could see he was getting¬†more¬†and more agitated.¬†I didn’t want him¬†to get to the point where he would not go back in. They attached a mirror to the helmet/bracket that was holding his head in place so that he could see me. That seemed to help a great deal. He was able to go back in and finish the first 30 minutes.

They brought him out for the IV. This was a bit difficult. He of course got very anxious and was struggling. I laid across his free arm and the two techs held his other arm. They managed to get the IV in and just when I thought we were free and clear, they determined that it wasn’t working. They had to do it again, this time in his hand. I think the tech was more upset than I was about having to stick him again.

DC and I sang a few rounds of “They Call Me Sir DC the Brave”¬† (luckily I had learned the words from the last test)¬†all the while ¬†thinking that this was definitely the end of the road. He was not going to stand for this. They managed to get the IV in before he even noticed and he was good to go. He did give us a few fake “Ouch” Ouches when he realized it was already in – just for good measure.

Amazingly enough he finished the last 10 minutes and it was over. He was so happy and proud of himself.

After he got his glasses back “I can see, I can see!” – our first order of business was to take this brave guy for wings – correction…. our first order of business was to¬†cut¬†off the¬† hospital wrist band. We can not wear that a second longer than necessary.

On our way to the restaurant I gave him the phone so he could call Doug. In his loudest – highest pitched voice, he screamed into the phone “I did it, I did it! I am so proud of me!!!!”¬†

FullSizeRender2

He continued to yell with excitement during lunch and all of the way home where he fell asleep¬†immediately after telling me “I am not tired!”

sleep

A few days later he received a Certificate of Bravery in the mail from his aunt. She was proud of him too and he was thrilled. There is nothing DC loves more than to have everyone to tell him over and over again just how proud they are of him!

bravery

But seriously,¬†I could not be prouder of him.¬†This guy never ceases to amaze me…….

 

 

 

 

Knock, Knock, Knock on Wood

Knock On Wood

Knock On Wood

Just recently¬†I was reading a blog¬†that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip¬†came at age 21 and for the most¬†ridiculous reason.¬†¬†As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car¬†in order for him to understand what could¬†happen if he¬†were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

I mean, I have really been lucky (still knocking wood), so much so that¬†we’ve never had to use¬†a Band-Aid. He loves¬†Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when¬†he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.
Band-Aids, especially “character-themed Band-Aids” are on his¬†“odd gifts list” along with the¬†rolls of scotch tape, mentioned in an earlier blog.

No Injury - Just wanted to wear a Band-Aid

No Injury – Just wanted to wear a Band-Aid

Donald Duck - part of the

Donald Duck – part of the “Character Collection” (no injury, just a fashion statement)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends (from grammar school, believe it or not) before we headed home.

We arrived on Friday evening. DC was happy to¬†be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to¬†Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel.¬†It was a nice day. ¬†We had a good time.

Sunday morning was going to be¬†spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water -even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect. ¬†Even as a baby, he did not have tears when he cried. But¬†here¬†I could see he had tears running down his face…… real tears.

“Tears!”

I thought¬†possibly his allergies were hitting him harder than usual –¬†Doug had the deck door open and¬†the deck was right on the golf course.¬†“DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense,¬†¬†and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration¬†– DC¬†being able to tell me that something ¬†is wrong¬†and what is wrong¬†is a very BIG ¬†deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear. ¬†I dumped everything that I had just packed out¬†and could not find the¬†tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried¬†keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk, he would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while¬†DC was making very loud noises, yelling out random words, flapping, stimming¬†and doing¬†everything else that comes with his anxiety. ¬†I’m not sure what¬†the man at the desk¬†thought was going on and why we needed a flashlight and tweezers, but¬†seeing¬†DC in the middle of the lobby¬†absolutely loosing it; he looked frightened and¬†asked his assistant to go¬†check again. She came back with no flashlight and no tweezers. Seriously,¬†¬†what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally¬†became comfortable with doctors. I didn’t want a long and scary emergency room visit¬†to erase the years of progress he had made.¬†The other issue was it¬†was his¬†EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting¬†that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around¬†in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to¬†buy the tweezers and flashlight. Now we are all¬†in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was¬†so out of control,¬† I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area; ¬†I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only¬†ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around¬†and she asked if he needed to be sedated.¬†I told her¬†(with fingers crossed) that he would not.

They took¬†us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!”¬†but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really¬†knowing if he would¬†understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, just to be sure, I suppose, that it was out.

DC¬†calmed down immediately¬†and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very¬†proud to tell people that he¬†had been¬†in the ‘hos –¬†i – bull”.

We were done and over it in time to get back to the room, finish packing – where he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no.

We were also able to visit my friend as planned.

Visiting Friends

Visiting Friends

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.


(and yes…….. I am still knocking wood……………)