Tuesday, November 4, 2008

Is It Just Me?

Or are you seeing a change in my princess? The 1st photo was taken 2 weeks ago, and the 2nd one was on Saturday. She has missed school the last two days. She just does not feel good. Something has got to give. We still haven't gotten an MRI done. How can we? We don't have a thousand dollars to pay for it. The bills are rolling in and the money isn't.

The dealership that Andy works off just laid off all of their lot techs, the general manager, and some parts people. Nothing like that to scare your pants off of you. However if they laid him off, then he could qualify for unemployment and maybe we could get some insurance for our kids. I guess there is a bright side to it.

He interviewed for a company that he was super excited about, as he has done everything that they wanted him to do before, and they haven't called back, so I don't think he'll get the job as it was over a week ago.

I can't belive it's November already. Every year I think that we are going to get on our feet and be able to help someone over the holidays. But it seems like we are humbled once again by needing the help.

Anyways, I am super worried about Chloee. Rhett needs to get into the dentist, as well as maybe the Dr. if his diarrhea doesn't stop soon. We are going on a week, and I am pretty sure it's a C-diff flare up. We went through a box of 50 some odd diapers in 30 hours. Not to mention about 10 loads of laundry. Can you imagine how red his little tushy is? It's not a pretty sight.

Funny how he has been in the hospital so much, even so much that I don't mind doing it on my own anymore, and the C-diff flare ups seem to worry me the most. There is just so much poo. It always makes me worry if he is absorbing anything at all.

He is even leaking out of his G-tube like crazy.

Did I mention Hunter has had some type of bug going on as well? He threw up on Sunday and hasn't gone to school this week either.

Don't you wish you lived with us? We seriously know how to do some partying around here.

I have decided I need a maid, and someone to clean up all the icky messes around our house. Any volunteers? ;)


Niksmom said...

Oh, poor Chloee! She looks like there's a lot of tension in her face and head. :-o

Um, if it's c-diff, make sure EVERYONE is washing everything LOTS. It's spread most rapidly thru contact w/fecal matter.

L said...

If you bring her to the ER again don't they have to do at the very least a CT scan? That really ticks me off! Poor kid she doesn't look well and she deserves to figure out why. More importantly you don't deserve the stress.

AZ Chapman said...

AW MAN PAM I feel frustrated for y I can't believe that they won;t help C Hang in there I wish there was something I could do to help y guys I think i am going to talk to my mom tomorrow she being a dr and a;ll. To bad y can't fly C to UCSF( where my mom works to get a scan to see whats up.


Carey said...

Don't you guys qualify for insurance for the kids? on one income and w/ a family of 6, you should qualify. what's wrong w/ utah? i'd take her to the ER, they have to treat her, this is crazy! what about going to the news, (paper or tv)? it's so crazy! surely someone can help you? isn't your children's hospital a charity hospital?

Shari said...

Chloee does look very tired and like she doesn't feel good. I continue to pray and hope somehow you can get the help you need.

Angie said...

Hey Pam: You don't know me, but I follow your blog quite a bit. I have a family member that works for Intermountain, they are not to refuse a patient for any reason especially for a lack of ability to pay. I feel so bad for you and your fam. What a scary situation!

Kaden and Angel Ava's mommy said...

I agree with the others...I didn't think a hospital could refuse a patient because they were unable to pay. Poor Chloee. Seeing the difference the two weeks made, worries me. She looks as though something is definitely wrong. I would take her and demand they do what they need to figure things out. There is NO reason a child should suffer due to others need for money. That is sooooo frustrating.

All 4 My Gals said...

Praying for Chloee!

Carla said...

I agree with the others but to possibly add some insight--when you dont have insurance, they take you in and make sure nothing life threatening is obviously present in the moment--bare minimum--and nothing more. Nothing voluntary can be done--like you voluntarily consent to an MRI instead of you need an MRI stat or you're gonna die of some unknown cause.

The key is getting a fiesty doctor at the ER who is willing to find a reason to step on the red tape and get it done for you while at the ER. Lots of times doctors at the ER will tell you to schedule an MRI once you get home and to follow up with your doctor. The MRI places are not required to allow you to do the test this way. It has to be an ER doc ordering it "now" while in the ER or I dont think it will happen.

So my suggestion Pam--is to put on some fighting gloves and head back in! It would help if she was in pain when you went though.

I am praying for you. My heart breaks reading all of this--and seeing that she clearly looks ill and even like she lost a little weight--and no one will help you without a fight. That just isn't right!


Michelle said...

Oh honey. Yes, she does look drawn. Clearly, she's got something going on. I agree with the above - take her BACK to the ER with the intent of not leaving until something is ordered at the present time...not in a day or two as they previously recommended. Obviously, she is not improving and I assume that they gave you some course of action when you visited weeks ago. Prayers for dear Chloee and sweet Rhett...and you, of course, from us. xo

The Bryant Family said...

I too am worried for Chloee. the two week difference reminds me of the time you posted the difference in Rhett some time back. Is there not another hospital you can take her too? The system is supposed to work for us not against us....yeah right in a perfect world.
You are in my thoughts and prayers.
Have you had a blessing done on her? They always seem to help.

Anonymous said...

There is a nasty little bug going around Riley was in primary childrens hospital over the weekend because of vomiting and dehydration and high fever , and now mickelli is home from school because she is sick... I hope all your kidos get feeling better soon !
Lots of hugs!

Damama T said...

If you are really concerned, get the test and tell them to get in line behind of the rest of the people you owe. That $1000 will look really cheap if it turns out that something was really wrong and you didn't. Also, you posted about Andy's pneumonia back on 10/21. Will that hospital help?

As always, keeping you guys in my prayers.

Leishman Family said...

Hi Pam you don't know me but I have been following your blog for a while now. I live in Utah with my 3 kids and one on the way. my little girl has had alot of feeding issues that no one seems to know much about. And my youngest son has Down Syndrome, he is 2 1/2. We haven't had the major med. issues you have had to deal with with Rett but we did have some feeding problems for about 6 months. The reason I wanted to comment is I am just wondering if we just happened to get the right social worker at Medicaid or what. Because my son is on Medicaid D and I didn't have to do anything to look into it they just told me that we qualify and we also get SSI for him. Maybe your income is different, but it sounds like you are in our same possition that way. I would love to maybe talk to you about this more if you would like to e-mail me @ joshandmaria@acninc.net. Maybe I can find out though my social worker what you could maybe do. Because I know you have done alot and have talked to alot of people, but maybe I could help, please let me know. I really love your blog and so does my 6 year old son, he was so mad at the lady at Toys r Us. He said "Doesn't she know how special kids with Down Syndrome are?" I hope to hear from you.

Chris said...

Take her back to the ER or to a different hospital. Granted it could just be the photos, but she looks glassy eyed. She looks sick, that compared with the headaches would have me worried. It saddens me so that a hospital wouldn't take care of your girl--give her the tests she needs. Praying for a solution and for Chloee's health

My Three Sons said...

I'm sorry I just saw your e-mail from yesterday so I jumped over here right away. I think if you can find the same ER doctor that helped you last time, maybe he could bring you into the hospital and order her a MRI then. That is probably going to be the only way your going to get one. Or how about your primary doctor? Can he not send you to the ER and order it? For example, my doctor is associated with two local hospitals and if there is something going on, it is his right to send the orders over to one of those hospitals and have you report straight there. Then after the tests are done, the ER doc and primary doc have a conference call and discuss. I don't know much about Utah but maybe that could be a loop hole. Please let us know what happens. I want you precious one to not have to hurt anymore because of lack of money. That is just unfair. She so doesn't deserve that from these rude and insensitve money makers!

Love you guys. Call me if you need to vent. You know I'm doing absolutely nothing for another 9 days. :-)

Lily said...

I'd take her back to an ER. I had to take my son's friend to the ER, who doesn't work and would be homeless without us. The ER had to treat him. I called a hospital first and they told me any ER had to treat whoever walked in the doors, regardless of whether they could pay or not.