August 29th (delayed update)

The past few weeks have been, interesting, to say the least.

Sunday 8/29/10

We were going to Jared's grandmother's for her birthday lunch. I knew we had a long tiring day ahead of us so I decided we would stay in bed watching TV until it was time to get ready. Breakfast in bed is never a bad thing, well, that's what I was telling myself at the time.
I was sitting at the computer, Jared was laying in bed watching TV, and Tyson was running all over the place doing what Tyson's do. He loves to climb up the foot board of my bed and then jump around.

I heard the tink sound of something going into Jared's mouth. Tyson is always taking little toys to Jared and if he doesn't stick them in his own mouth Tyson does.
When I walked over to see exactly what was going on I saw a penny resting on the back of Jared's tongue. I wanted to reach in and grab it but Jared bites, I knew that wasn't going to go well so I quickly wracked my brain for ideas. Ultimately I decided to roll him over and let it drop out, no, he's too close to the edge of the bed, he will fall. Then I decided to sit him up, leaning him all the way forward should to the trick right?
Ummm, no. He swallowed just as I was sitting him up. Crap.
I knew it wasn't a big deal to swallow a coin, kids do it all the time, right? I called Jared's mother, yes she would know what to do. She laughs a little and tells me it should be ok, and defers to her husband who once upon a time was an Army nurse.
I reminded them that Jared has bowel issues and tell them that I don't know if his slow moving bowel can pass the coin. Well at least not in a reasonable amount of time anyway.

I consulted the BBC moms for validation before disturbing the on call doctor.

The doctor on call must have thought I was a nut job. It is so hard to explain Jared's condition to a new person or doctor. After asking me a ton of questions, is he breathing ok, can he pass gas, ect. he told me everything should be fine with a hint of "Why did you call me??" in his voice.

We enjoyed the rest of our day as planned.

Monday 8/30/10

I had an appointment with a phycologist to get some medication to help me sleep. I missed my last apointment and had to reschedule so I was really looking forward to this vist. I've been sleep deprived for far too long.

I always make plans to have Jared's aide sit with him and I get a family member to take the kids when I have apointments for just me.

Jared's grandmother picked Tyson up around lunch time and I started getting ready to go to my apointment. I try to make myself look put together when I go to therapy and I wanted to make the same effort for the phycologist. God forbid I look slightly askew and be slapped with a crazy lable.

I take my time and straighten up the house a bit as I wait for the aide. Jared is hanging out in his PJs, he normally does when we have no where to go.

2pm rolls around and the aide dosen't come. My apointment isn't until 2:15 and she knows that, maybe she's running a bit late.

2:10 comes and I pick up the phone to call the home health office. While I was looking up the number I realized that they were probably not going to be able to solve anything within the next 5 minutes so I dropped the phone and raced to dress Jared.

It would take much longer than 5 minutes to find a family member to sit with Jared. The mental health clinic has a $25 no show fee and I couldn't afford to miss the apointment or have to reschedule it and miss another week's worth of sleep.

I slapped clothes on Jared and was unloading him at the clinic at 2:22. I am Super Woman!

I think it freaked the woman at the desk out when I raced Jared up to the counter, half out of breath, and explained that I was running late.

I swear me and Jared would have started a riot in the mental health clinic if she rejected me or made me reschedule.

She didn't and I was able to see the doctor.

I aplogized to the doctor after introducing Jared and explain I had intended to come alone. He spent the next 30 minutes explaining to me that he wasn't quite sure what my official diagnois was but that he was going to give me a medication that should help with the symptoms I was experienceing. We talked about dosage and how often I should take it, he wrote me a prescription and we went on our way.

I decided to go to Wal-Mart to fill the prescription so that I could refill it anywhere if I have to travel. We need some groceries and I had to cash a check. I dropped the prescription off with my new medicaid card. I wasn't sure if it was going to cover prescription costs because I had just gotten it and it isn't part of the standard medicaid program.

We shopped and enjoyed being out of the house for a bit. I pushed Jared with one hand and pulled the cart with one hand behind us. We chatted with a woman whose son had a spinal chord injury. I think she may have thought Jared had an SCI at first. Her son was around the same age as Jared and I think her heart stung with a familiar pain when she saw us. I expained Jared's injuries and she gave me her information. She left us with an open invitation to visit and telling us that her home was fully handicap acessiable.

Our last stop was the pharmacy. When the lady pulled my perscription up she said "You do know this is $527.00 don't you?". Ummmm, no my insurance didn't pay for it? "No.", "Well then I need to make some phone calls and come back.".

I called the clinic as I loaded Jared into the car. They were going to close in 15 minutes and they weren't able to help me that day. She asked me to call back the next day.

I was crushed. I needed a full night's sleep so bad. I had bee so excited to finally get some help. My heart sank deeper knowing even if they gave me a cheaper prescription I wouldn't be able to afford it if my insurance didn't cover it.

Tuesday 8/31/10

I woke up and waited until late morning to call the nurse back and ask her what could be done about the prescription. She told me that she had simply forgotten to ask the doctor and told me to call back the following day. I asked her if there was finacial aide for people that couldn't afford medication and what I had to do to apply for help. She told me that I could apply, I needed proof of income and a statement from my insurance provider stateing that it would no cover prescriptions.

Fine. I hung up and called the local DHS office. They told me that my medicaid "spend down" should cover the medication. At this point I was so fustrated I spilled all my government assistance woes to the lady on the phone. She wound up giving me the number of a man in another county that could possibly help me with a program called AAPD.

I spent the rest of the day digging up infomation about the AAPD program. Eventually I connected with a lady that took our information and told me that Jared should be eligiable. She said she was sending me an application in the mail and that I needed to fill it out and turn it in at our local office.

That evening I sat at my computer to send and email. Tyson swarms me like a tiny shark and plays with whatever is in a 10 foot radius of me. Usually our time in the bedroom consists of him climbing up the foot of my bed, and jumping at the foot of the bed. After about what seems like 3 seconds he climbs down and repeats the process. I watch him in the mirror of my desk/vanity.

The moment I realized he had slipped past me and down the hall was the moment I heard a discusting thud in the living room.

As I ran into the living room I ran into Tyson who was running to me. The shock was wearing off and now he was scared.

Jared's lift chair was up and I knew instantly what had happened.

One of them was playing with the remote, the chair lifted, and Jared fell onto the floor.

As I rounded the chair I was proud to see Jared sitting up with his back against the couch. He was holding his butt off the ground with his right hand. His eyes were wide with a paniced expression, I felt horrible.

This is the process in which I deal with Jared falls:

  1. Ask if he is ok, he nodds yes so far.
  2. I ask him if anything feels broken as I visually acess his damage.
  3. I pull the wheelchair over and get it ready for a transfer, depending on the location of the fall.
  4. If Jared isn't wearing shoes I might decide to put shoes on him for better traction. This depends largely on the location of the fall and injuries.
  5. I place his right arm around my shoulders with my left arm under his left arm. I lift and drag him into the wheelchair.
  6. I imediately turn into the paniced annoying wife that asks a million questions. I ask him if he hit his head first and then we move down the body talking about any injuries he may have acuired along the way.

  7. Call Nicole.

Nicole is one of my best friends. She's an RN and she has been here since day one answering all my questions. She will tell me what she thinks and knows, she will tell me if she dosen't know, and she's willinging to look at any picture I text her. She honest, blunt, and she dosen't cry.

Jared hit his head on the table when he fell. He had a slanted cut across his forehead and it was bleeding. I questioned Nicole about it, texted her a picture, and we both decided it was minor. I patched him up with antibacterial ointment and a band-aid.

Next I had to call and report the fall to my mother in law. She was upset and wanter to send her sister (a nurse) over to check on him. I declined and told her I called Nicole and sent her a picture.

(Please forgive me, I'm finishing an update that I didn't finish several months ago. I don't remember all the details.)

Wednesday 9/1/10

I called my sister to come get Ty because I had an all day doctor's apt. with Jared the next day. I thought it was going to be awesome to have a semi relaxing evening at home with no kids.


We took a late nap so we had a late dinner. I gave Jared an apple to snack on before bed and he got choked on it a little. It wasn't really a big deal, he was coughing on his own, I wound up taking what was left of the apple in his mouth out so that he could cough easier. He settled down after a few minutes so I thought everything was ok.

About a half hour later, by then it's after 11pm, I roll Jared into the bathroom for a quick shave before we go to bed. We had an early day the next day so I thought I would get it out of the way.

He starts coughing when I ask him to hold his chin up so I can shave his neck. It sounded terrible like he needed to get something up and he couldn't. I leaned him all the way forward thinking it would help him cough whatever it was up. Mucus started running out of his mouth and I leaned him back to clean him up.

That's when I saw it.

The apple. It was a huge peice of apple and it had been stuck in his throat this whole time! When I took it out of his mouth I saw that it had a little blood on it.

I freaked out. I made sure that he was breatheing ok and rushed to get the phone book and the phone. I called the ER and told the nurse what had happened and asked her if I needed to bring him in. She said he was probably ok but I needed to watch him just in case. She told me to bring him in if I wanted to, or if it would make me feel better.

As I'm haning up the phone I hear a crash in the bathroom.

I ran in to see Jared laying in the floor. I don't know why but he fell out of his wheelchair and crashed into the toliet and landed on the hard tile floor.

I scooped him up and put him in the chair and checked him out. He said his side hurt and he had some scrapes on his knee. There was a red mark on his hip but he said nothing felt broken.
I decided to take him to the ER even though I knew he was ok. I just couldn't imagine telling anyone this story and ending it with "No, I didn't take him to the ER.".

I had to get both of us dressed and pack a bag with diapers, wipes, medical information, ect. and off we went.

The lady that checked us in asked if the gash on his head was from the fall from tonight, I told her no and that was Tuesday's fall.

We went to sit and wait. I looked at Jared all banged up and realized it must look like I beat him. I called another friend and told him if I went missing it was because they put me in jail for beating Jared.
Jared started making the poop face. I rushed him to the potty and he took a nice poop. I wanted to cry because I NEEDED that poop to look for the penny.

We went to have his vitals taken before they took him back to his ER room. His temp was 94. The nurse said that couldn't be right and retook his temp probably 15 times. I told her that his temp was always low because he was dependant and brain damaged. She said even so that's way too low.

She got us warm blankets and we waited for the doc.

Thankfully I knew the doctor. She is married to the minister that married me and Jared almost 3 years ago. She knew me well enough to know I didn't beat Jared. She agreed to order a chest x-ray just to ease my mind. She said if he aspirated any of the apples we wouldn't know for a week or so. She said he would get a fever and a respitory infection.

The x-ray showed nothing but the BB that was embeded in Jared's chest from when he was a kid. She was concerned because she thought one of the kids had fed Jared something metal (I told her I was still looking for the penny).

Jared spent the whole time telling me that he was hungry and he wanted to eat cold soup and bread. When I didn't produce cold soup he started calling for Kesha.
So everything turned out just fine. Well so far anyway. We got home and Jared had his cold soup, we finally got in bed at 3:30am.

* This is a delayed post. I wrote It back in early September and never published it. I wanted to finish it because I felt it was important to show just how hard it is sometimes. It also contained information that leads up to the current update.

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