Thursday, October 16, 2008

This Stress Is Killing Me Smalls......

I can't empty my brain again to go to sleep, so guess who gets to listen to me?

Don't you feel lucky?

Rhett still isn't moving air through his right lung as well as he is his left lung. I don't want to take him in to the Dr. for a few reasons. Mostly because we don't have insurance and it's 70 bucks a pop just to walk into the office. Another reason is I am afraid they will just readmit him, but he really doesn't seem like it's bothering him at all.

Yes, he is running a little lower on his sats, but he is borderline where he should be, about 94/95 on room air when awake. When he sleeps he is in the high 80's unless on a liter of O's. Then he is at 97. He has finished his antibiotic but we are battling C-diff flare ups again.

I am pumping him full of lots of fluids and he is taking full feeds through his G-tube and eating snack type things during the day. His coloring is good. His cough is only in the mornings and when he wakes up from naps, no fever, and he is running all over and climbing on every little thing he can.

So I don't really see a need, other than I know what his lungs sound like, and that right lung doesn't sound 100% right. So I sit and make myself crazy.

Our dog peed on Rhett's head today. (You have to realize this dog stands as tall as Rhett and is a boy.) He is really protective of Rhett, and we had a neighbor kid at the door, so I think he was marking his territory. I don't know why that's bugging me other than it's just totally gross, and I thought I would make you say eeewwwwww.
A bath and head washing later, and it was no big deal. Just one of those things I guess.

Hunter has an infection in his belly button, don't ask me how that happened. Only at our house I tell ya, only at our house.

Chloee has decided that it's fun to come into the bathroom when I am taking a bath and talk to me. She usually brings a treat for us to eat. I guess she's telling me that she needs mommy time. I don't mind. We sing songs and try to see who can hold their breath the longest....I let her win sometimes.

Koda is being bullied at school. I need to go in and talk with someone about it. Both him and I didn't want to face school today, so I kept him home and we hung out and watched movies and played on the PlayStation. I know call me a bad mom, but sometimes he needs that. School for him isn't like it was for you and me. I feel like he is there just to take up space. They want him to do assignments that he can't do even though he knows the information. I don't understand why if he is getting 90 to 100% on his tests, what makes doing the work to learn the stuff such a big deal. He obviously does better listening and reading on his own. Why can't they just accept that. He has a disability. But because he is so smart they expect so much out of him that he socially can't do.

I dunno, school seems like such a waste of time for him, and he doesn't have any friends. If I knew what I was doing I would home school him, but I don't know how. I want him to grow up and be able to be on his own, but I don't see that as happening. He is such an amazing kid, and he is so sweet. He is trying to find his place in this world and the kids at school are making it super hard for him. Since when was it not cool to have a big heart and care about everyone?

I am so sick of fighting for everything. I have been fighting with Medicaid, DSPD, and SSI all day trying to jump from one hoop to the next. I am ready to raise up my white flag. Although I don't know what good that would do.

Hopefully things will start looking up soon. Everything that Andy and I have ever gotten in our lives we have had to fight for. Alot of the material things have been taken away by us selling them to pay bills, or whatever. One of these days I plan on having them back, and being able to provide for our family and not worry about if we are going to loose our house for the second time, and if we are going to be homeless out on the street because we have to choose between paying our house payment or keeping our son alive.

Nobody should ever be put in this situation, and I know we are not the only ones dealing with it.

You know what would be nice? If we got our settlement from Rhett's overdose. I am really sick of this dragging on and on and on. The hospital is just waiting for an assessment of damages, but our attorney doesn't seem to be moving too quickly. I just want the ball rolling.

I want to see some action somewhere in our lives other than us sinking.

On a flip note though, we are super blessed with what we do have. Andy and I have a strong marriage, and our family is united. It would take alot to break us apart. We do have a roof over our heads for now, and we are blessed that after all that Rhett has been through that he is still with us. When I wake up to each of my kids faces each morning, and my husband with his sleepy bedhead and silly grin, it really makes it all worth it.

Who cares if I am a crazy rambling insomniac. It is MY blog after all. It's how I stay sane. Right?

6 comments:

Chris said...

Right!

It is your blog so ramble away!

Pam, have you ever thought of doing some freelance writing? You have so much experience dealing with the dos and don'ts of having a child in the hospital. You could really educate parents. If I saw your story in a magazine, I'd read it, learn from it, and be moved by it.

Niksmom said...

Just sent you an email about Rhett's breathing and some other thoughts...

My Three Sons said...

You are stressed out and understandly so. Look what is dealt to you. I think you are an extemely strong woman for all that you do. I have my plate full with three kids, one always sick and being a single mom. So I understand in a different way. Your right. This is your blog and if you want to vent, do it. Then we can all help you through it.

Take care and I will pray for an easier days.

Nicole said...

Hi, You dont know me, but I read your blog. This is a great homeschooling program, and they offer it in Utah. They give you ALL the supplies, even the computer, and they reimburse you for the ISP. They send all books, everything. You just login daily to do the work. Easy as pie! It is our first year, and we are loving it. Koda shouldn't be bullied, it will sour him on education. You can start K12 IMMEDIATELY...like now. Think about it. If you have any questions about it, email me at nicole@theshellroom.com, and I can answer your questions.

Good luck to all of you...I will pray for you all.

XOXO

Nicole said...

Whoops! Here is the website!!
http://www.k12.com/utva/

Sorry about that!

Anonymous said...

Pam, feel free to email me if you want about homeschooling your son. There are other options besides k12. And how about this week if I stop by with HWT stuff? We are taking a break from school this week so I could meet up somewhere, or I could just stop by and say hi. Email me!!!