It all started as an "OH NO!" and turned into a disaster

Written 10-29-14

It all started as an oh no and turned into a disaster.

Our toilet was leaking into our basement and destroying the floor in the process.  So we decided that we had to do something and that meant pulling out the leaking toilet and repair the damaged floor and put new floor and toilet down. (FYI if you ever redo a bathroom you might want to keep in mind that it would be helpful to have a second bathroom.)  Oh as we were pulling things out like the vanity and the toilet we were sad to see that there was so much more damage than expected.  We had to take the tub out in order to go under that to make sure we got all the bad wood out.  It was disheartening to see just how much we were really going to have to do in order to make the bathroom decent again.

Gratefully my parents have been willing and able to help me by letting all of my kids stay with them.  My parents are the best!!!  They get all my kids up and out the door. My dad even takes Rhett and Dylan to school since they go to schools that are a long ways away and the buses only pick up them up at my house.  My mom takes Nikole and Gavin to school. It helps completely that she works at the school that Gavin attends. 

If this couldn’t be worse we just add to it.  

We pulled everything out Saturday and Sunday and by Wednesday we still didn’t have a floor.  After a rough weekend without kids and a bathroom, since this is our only bathroom right now, I was grateful for the week to start.  As I was headed out of the house Monday morning I get a call from a debt collector on my cell phone for a $47 bill from IHC Homecare Bountiful.  I was in tears!  I couldn’t even understand why all this was happening to my family.  It would be different if I didn’t have to deal with all the multiple thing that I have to continually juggle.  So after a day and talking to my husband about bills that we need to pay, I called IHC.  Let’s just say some people were more helpful than others.  I finally got in touch with a manager over accounts at IHC and the financial assistants.  She was downright mean!  I tried to explain to her that we are really struggling and to be getting multiple bills and when they all cover each other it make it really hard to keep track of them all.  She told me that I should make a spreadsheet and good luck.  I tried to tell her that I get bills from several places that are all on payment plans, not including the major payment plan for my two surgeries and Rhett one surgery.  I informed her that because I work and my husband works we don’t qualify for help from anywhere.  We own a duplex that we rent out and it covers the mortgage so my boys are not covered by Medicaid and they won’t be because of that.  I let her know that we have already gotten help once this year with medical bills for the boys from Angel's Hands Foundation

I have calculated that I get a bill from the OB, IHC homecare Bountiful, IHC homecare SLC, IHC clinic, U of U, Neurology learning and behavior, orthodontist, and Anesthesiologist for my surgeries and the boys.  Yep you counted right that is at least 8 bills because of the multiple bills that I get from IHC.  That is several payment plans and payments every month.  When I told her that we have met our out of pocket max (which is $8000) and starting in January it is going to go back to $0 and we will have to start all over with everything.  Those payment plans are just going to increase.  Right now our big payment plan from the hospitals are about $4000 and the payments are about $160 every month.  With all those other bills it is at the minimum of $25 every month.  But there are at least 8 bills listed so I would be paying $200 for those 8 other bills plus $160 that makes it $360 every month.  Oh and if any other balances are added to the balance that we have now they are going to increase the payment in order to pay it off in 6-12 months.  Not included in this is the orthodontist bill.  I told them that I will pay them when I can and they are great at working with me on that.

 

I tried to tell this manager on the phone but I get this response, ‘Well even if they were all on the payment plan we would have the payments really high in order to pay it off in 6-12 months’. After talking with this woman on the phone I was almost in tears.  She said well sorry we cannot help you.

At that point I was trying so hard not to just break down and cry.  It made me want to regret having my kids.  HOW DARE THAT WOMAN DO THAT TO ME!!!!!  My kids are treasures and should be cherished not regretted.  Why would she do something like that?  I have not eaten in days I just feel sick to my stomach.

I thought about apologizing to the woman that I talk to saying…. “I am so sorry that I gave birth to my children who have medical needs and will have to fight to pay the medical bills.  I know that if I had adopted them they would always be covered by Medicaid.”  Just writing this today I chocked down some instant breakfast praying that it stays down.

This whole situation is too much.  I need help and I am not even sure where to go for help.

Today-

I am still not back to "normal" if that is what you call it.  I can eat but not lots and not often. My favorite food that doesn't make me sick is sushi.  LOL!  I know land locked state and that is a favorite.  My bathroom is still nonexistent. We are barely hanging on with all the money issues that we have.  I have had to put this whole bathroom on a credit card, I mean heck let me check my pockets do I have $4000 to fix everything that needed to be fixed in my bathroom? Uh no.  So in order to have a toilet and a tub working that is what was needed.  At least I can see that we might have a working bathroom before next weekend which would be the best thing ever after having none for over a month.

I am still unsure how I feel about so much. I am working on trying to figure out how I feel and why I feel that way. I think that will take sometime, and that it is going to be hard for me since I am not use to doing that very much.  Is everything in life hard? I would hope not.

I am so grateful for Crystal and Jared Hess that came over to my house and helped with the tub taking out business and the tiling of the wall business.  They are a huge blessing!!!  Thank you ever so much!!!!!! Crystal has been getting my boys after school and taking them to my parent house for me because I can't and the buses don't bus them there. I believe that it is stressful for her to do that for me but I am so grateful.

It is now almost December and my mom called to find out what we are getting the kids for Christmas.  I told her that I am not getting anything.  I just put a bathroom in my house that is all I can do for this year.  She asked if my spouse was going to get anything.  I told her that I didn't know.  I think she is frustrated too.  I completely understand.

I was thinking the other day that it is a miracle that I am as sane as I am right now. There is so much going on in my life that could cause me to lose it completely but thankfully to the music I am listening to it is somehow keeping me grounded.  I know you will think it is weird but it is what is holding me together right now. Thank you Kim Hyun-Joong and SS501(Triple S)!!  I have been listening over and over. Even if it is the same songs and the fact that I don't understand everything being said, but it is so relaxing to me.  His music and their music have touched something in me that I didn't even know about until I heard it. This is just one of the many that I love to hear. I know Jan Hernandez would crack up reading this, but she is introduced me to this music. Thanks Jan!!! :)

Just the other day when I took Rhett to the Cardiologist he did a 6 minute walk test and came out with really high blood pressure.  So now the cardiologist is referring him to a Nephrology (the branch of medical science that deals with the kidney) doctor.  Now we have another doctor to add to the list of lists.  But the doctor was wondering if there is something going on with his kidneys, since the main reason for having high blood pressure in children is linked to the kidneys.  So we are having lab work done the beginning of December and the middle of December we are seeing the kidney doctor.  But what I don't understand is that if it says something about this syndrome affecting the kidneys, why hasn't anyone wanted to check it out before?  Oh wait maybe that is because they just found out what the boys have in March.  Even so it says so right there in print:

Short Rib-Polydactyly Syndrome Type 2 An autosomal recessive lethal skeletal dysplasia (OMIM:263520) characterised by markedly short ribs, short limbs, polydactyly and multiple anomalies including a narrow thorax with hypoplastic lungs, extreme polysyndactyly, dysproportionate dwarfism, median cleft lip and palate a ventricular septal defect and cystic Kidneys.

Imaging
Shortened and horizontal ribs, squared scapulae and elevated clavicles with lateral kinking, normal spine and pelvis configuration, and shortening of the bones of all four extremities, with extreme reduction of tibial bone length.

Molecular pathology
Defects in NEK1, which encodes and enzyme thought to have a role in controlling meiosis and cilia assembly, cause short rib- polydactyly syndrome type 2.

All of that is found here: http://medical-dictionary.thefreedictionary.com/short+rib-polydactyly+syndrome,+Majewski+type

But now I question it because everywhere I look the infants have died at birth or right after.  I understand that they told me that Rhett would die after he was born, but I refused to accept that since I was so very sick with him.  But I figured out that the chances of having a child with SRPS are .0075%.  So that got me thinking and I am not wondering "HOW THE HECK I ENDED UP WITH TWO?" according to the doctors.  If it is really that rare how did that happen and how are they still alive?  I will be in contact with the genetics office this week to get the boys in to discuss this whole thing.  The appointment will probably be months away because that is how doctors roll.

I am seriously thinking of starting a fundraiser to help cover the medical costs that we have. My sister said she would help..... I wonder.  I think that would help me destress, even if it a little, and I think that might help Rhett not try to turn blue to because he doesn't want to pay for oxygen.  HAHAHA!  You would think it is free.  I told him that I didn't have to pay for it since he was changing tanks often.  But in my opinion he shouldn't have to worry about how much money his medical needs cost.

It is so hard!

People have often asked how I am doing and to tell you the truth I just want to cry!  No there are very few people who know what it is like facing what I face every day but most of them are different issues since I don't know of anyone who has what my boys have.

You have no idea how hard it is to talk to these doctors and get as much info as you can and then understand that said info.  But when the doctors finally see the results and they can see how bad the results are... you still have to smile because you have your children right there and there is nothing that you can do about that but the doctors face drops into an almost grim face.  After going through what I have to go through I often tell people that I don't care, I also will tell people what I think most of the time if I am in one of my moods that let's me just get it out.  I feel like such a horrible person sometimes for being honest and mean with people, but heck the petty problems that they face compared to mine are so just that petty.  Yes I know that there are many people out there that have their challenges and I know it is hard for them, I understand.  I know everyone has problems and they are all different, and that is a good thing.  But when you ask for my opinion and you want me to be honest do be so put out if I don't tell you what you want to hear because I can only take so much before I just snap.

You have to understand where I am coming from.  We struggle everyday with just getting by not only with money, food, and everyday things but also with the health of our boys.  No we don't get help very often because we know of many people that could use it, and feel that they could use it more than us.

But man when we get the rug pulled out from under us so many times often I am ready to throw in the towel and say "screw you, I am done!"  How many times do I have to watch the faces of doctors drop and then have them tell me that they don't know?  I would love a straight answer for once instead of this I don't know, or we might be able to...

So Rhett asked me the other day when it was just him as me... "Mom if I pray hard enough and want it really bad and have the faith to get it will the lord give me the ability to fly?"
As I looked at him and tried not to laugh since I wouldn't have thought he wanted to fly, but then I remember he does love planes and wants to go on them more.  But because of fund not going to happen anytime soon...  I looked at him and said... "No sweetheart.  The Lord doesn't have the power to give you the ability to fly.  You see, people were not created with wings to fly on their own and that is why we have airplanes and not wings."
After he thought about that for a little while he said... "Well if I pray really hard and have the faith will the Lord be able to help get me off oxygen?"
As I looked at him and wanted to cry I said without crying..."Yes honey the Lord has the ability and power to help you get off oxygen.  It might not be the answer that you expect but he can do that if that is what you really want."
As I thought about that answer that I gave him I wonder if he really knows what is going on, I mean he is a smarty pants.  He even told the doctor that without oxygen he turns blue.

What would you do if you had to face everyday watching your child not breathe right and then find out and have the knowledge that the lungs of your child are not functioning the way that they are suppose to meaning that the lungs are slowly not working anymore?  How would you handle it?

Just want to cry....

Well if you are my friend on facebook you already know that my house was broken into today. :( I know I have been very emotional and scared and hurt and there are many more things going through my head.

To recap the day...

Rhett had 102 degree temp this morning and so I put my foot down and told him that he was not going to school. Called the doctor and got an appointment for 10:20 am. Well that is good considering I am under a lot of stress and having a sick child doesn't help with the problem.

So I have been running around through the morning to get all the boys out and to the doctors in time. Well we were off at 10! Yeah we might actually make it on time. :) I think that would be amazing...

So we get there and hurry and wait. Just like any other normal family visiting the doctors office. I was just hoping that we could be done so I could take Gavin to school since his class starts at 11:45 am. The doctors finally sees us and just our luck there is no reason that Rhett should be having these fevers. They are going to be treating my boys for walking pneumonia. Just what I wanted. NOT!!!

Well we are out of there and it is 11:35 am! Hey we might actually make it to school on time. This is working out better than I thought it would. :) So I run Gavin in and get Rhett's homework and then take my other boys home.

We drive into the garage a little before noon. I walk in the door and see that the gate to my stairs is off. My first thought was that daddy came home looking for something downstairs. I look in my kitchen after I put the gate back up, and don't see my computer. Was I sitting in there with that this morning? Well as I am thinking of that and after my boys came in from the car I walk into my living room. My front door is open. HUH? Why would that be open? Maybe daddy forgot to close it. As I take a closer look I realize that it had been kicked in. I grab the phone not knowing if there is anyone in my house besides us or not. Called 911 since I was panicked not knowing. Was told to go outside and wait for the police. So me and the boys go sit on our front grass. I call my husband and told him and asked that he come home. He did which I am so grateful for. The police arrived as I was on the phone with my mom trying to calm myself down knowing that my kids would feel the stress in me if I didn't.

Well they walked through the whole house and found nobody. Very sad that they didn't find anyone but grateful that me and the kids were safe... well as safe as I could be considering. After the police were finished searching the house we went in and found out that besides my laptop that was taken, my husbands coin collection, my FIL coin collection that he gave my husband was taken, Rhett's bag of money was taken, game platforms for video games were taken, and video games themselves were taken. The people or person that did all this went through all my drawers and took everything that they could get their hands on that was of value to them. My heart aches to know that my laptop was taken. I have my business on that and all the pictures that I have taken and have not posted are on there. :'( I am praying that we can at least find that.

I really don't want to clean up my room because I think I will have a break down just thinking about what has happened. I have been crying off and on lots and it is getting to the point that I wonder if I would be able to stop if I just let it all out. Hummmm.... I guess one day I will find out this vital info.

If anybody that reads this can help me by keeping an eye out for my Lenovo laptop I would be most grateful. I seriously need that. That is were I have my calendar since my kids kept taking my paper one. Please keep us in your prayers and thoughts during this hard time. Thank you all for caring so much.