Happy Dr. Day!

Today is Dr. Day! All of our favorite hospitals are posting about it and it has me thinking about all the amazing doctors we have worked with over the years.

We have seen at least one doctor every month since Jillian was born. Jillian has had over 160 doctors appointments, 8 hospitalizations and 7 trips into the OR. Lydia has had 2 trips into the OR, over 30 doctor appointments, and 3 hospitalizations. All of this adds up to lots of time with doctors!

We have had some rough doctors over the years... some that have frustrated me, two that raise my blood pressure just from them walking in the room, and some that I have had to work hard at figuring out how to best communicate with them...

However the majority of our experience with doctors has been great. We have a great team! From our first GI doctor who loved Jillian enough to admit when Jilli surpassed her expertise and she loved Jilli enough to admit that and pass us on to our current GI dr who cares about my girls so much. To the point if a blocked number comes up on my phone at certain times I know it is her calling to check in. Our pulmonologist worked hard for Lydia once we realized there was a medical need going on. Neuromuscular cares deeply about our entire family and it pains genetics that they don't have any answers for us yet. We have had countless floor, ER and specialty doctors go above and beyond for our girls. We are so grateful for our many doctors and the amazing things they do to help out girls!




Jilli got her trial wheelchair on Monday. She is working hard at getting the hang of it. We have to give it back on Monday and that was making her really sad and breaking my heart that we were working so hard all week to teach her how to use it and give her some independence and then we were going to take it away. Thankfully last night Brent was able to stop at a local lending closet and rent out a wheelchair until her chair is ready. She is so excited. It has been a week of adjustment. The weather has not been great so we have gone to Target a lot to try out the chair with the smart drive. It is going to take a bit for her to get use to the smart drive (she is doing great with the chair in manual mode) but she is working hard. Something new is hard though and she has been showing her processing in sassy words. I know it is just her working though something new in her world but it is still hard. She is still "typically" developing intellectually so with her it is a mix of helping her with the typical and her unique needs.

Last weekend we had a great time with our friends the Smith family. Jilli loves her friend Nate and we love spending time with Holly and Kirk. We had a really good weekend. We went to the observatory, out for ice cream and went to church. It was fund spending time with friends. We also had Jaime, Jason and Emerson over for dinner on Tuesday night. We had not seen them in a couple of weeks so it was nice to catch up.

We are watching Lydia's pulse ox in PT. It is seeming to confirms the thought that she will likely need oxygen once she starts to walk. We understand that are accepting that. If we do end up going that route that will be a new juggle. The girls keep us on our toes.

On Friday we got the letter saying Lydia now has Katie Beckett. We are so excited! This will really help! I will be honest, it was a little bit of a bonus that it came while Paul Ryan was speaking about the bill that fell apart. There is still work to be done in healthcare, I just strongly feel like the Ryan plan was bad. I encourage people to go watch the Healthcare Triage videos on youtube. They have been really informative to me.

I have also spent a lot of time lately doing care coordination for the girls. Lydia had a med that we were getting 60ml a month instead of the 81ml we needed, Jilli got an oxygen concentrator and there has been a lot of phone calls with that, I called all of the places that we have medical bills with to let them know of Lydia's Katie Beckett, I have been writing daily to our PT about the wheelchair trial, I've been in contact with the wheelchair place working on it all... I've been meaning to blog all week but it just has been busy! Brent started his new job on Monday and he really likes it. I am typical me and am just waiting for insurance numbers so I can work on all of that.

Lydia's tummy drainage still has a strange smell even after the med finished. Now we are adding probiotics to see if that helps, if not we are going to try a different med. The med did help with the pooping... she went from pooping twice a week to pooping multiple times a day. It is back to newborn poop and smells really really strong but at least it is coming out. Hopefully some probiotics helps balance some things out!

Well time to get back to the rainy day. We ran to Walgreens earlier but other then that we are trying to have a curl up on the couch kind of day. We watched a couple of episode of Julie's Greenroom on Netflix (highly suggest the show!) and at the moment both kids are playing with toys but we all know that will only last so long lol! A downish day is kind of what we all needed here today!

Wishes

Last night the girls as I curled up on the couch and watched Disney's live stream of Wishes. If you don't know what Wishes is, it is a night time fireworks show at the Magic Kingdom. Wishes has been the fireworks show that has capped off the night for most of my Disney World trips. I own the CD of the music and every time I watch that show I cry. I can't explain it but to me it is emotional. Makes me thankful for my times at Disney and think to the memories. Growing up I wanted to be Tinker Bell in Wishes.

So as I sat there curled up with my babies last night all I could think about are my wishes.

I wish we had a congress that worked together
I wish people didn't look for selfish gains
I wish people actually care about others
I wish people did what was right not based on sides
I wish people didn't make backroom deals
I wish people worked for greater good

Yes all of those wishes have to do with Washington this week. The things people are saying is hurtful. The lack of logic is astounding (if you were born you benefited from maternity care if you are a boy or a girl... and if you are pro life and view life as starting at conception why would you block them getting medical care? Looks to me like your pro life stance is only for your words but actually having to do something is taking it too far). I have never been a huge Paul Ryan fan but was rather indifferent about him but mark my word as of today I will NEVER vote for him (yes I do actually live in his district, that is not an uninformed threat) And the "Freedom Caucus" you, oh you. I can't even watch you on the news anymore because it is not fair to my blood pressure. I have written a lot about healthcare these past several months and have read so so much more. I am having another piece published in Complex Child's April edition about healthcare. I understand ACA is not perfect, but I also understand it protects kids like mine. I would say call your congressman but if yours are like the ones in Wisconsin they are either not answering, not writing back or complaining that people are contacting them. So be vocal to those around you (respectfully) and yes still reach out to your congress person if even only for your own piece of mind. Stripping the 10 essentials would be horrible! Now don't take this as I am thrilled with the Dems either. Right now we be the perfect time for them to come out and say that they hear people's frustrations with ACA and provide suggestions to improve it. 


So what are some positives going on in our world?

-We were gifted a portable oxygen concentrator which will be so helpful for Disney and for day to day. Pulmonology approved us using it at the 1lpm setting so we are good to go!
-Today is Brent's last day at his current job. Monday he starts a new job. This was not something he went out looking for but this company came looking for him and we are hopeful that it is a good fit. There has been a lot of prayer and consulting others about this choice but we are both at peace with it and feel like it is the best direction for our family.
-This weekend we are having friends come over. Jilli is so excited. It will be the norm around here... all children have feeding tubes lol! We are thankful for our special needs family that walks with us!
-Lydia has learned how to crawl! She is into everything she can!
-Jillian's trial wheelchair (they still have not ordered hers) should be dropped off at therapy on Monday!
-Our fast passes are all made for Disney which means we are less then 60 days away! I am so excited!
-Jilli has been determined to learn how to add and has been doing rather well at it! That girl puts her mind to something and she tries her best
-From now until we go to Disney Jilli is working on watching a Disney movie each night before she goes to bed. She is having fun with it.
-Our new van is working great and I am so thankful for it
-Lydia's baby dedication at church is scheduled for April
-Several people have signed up to help serve dinner at RMH!!!
-We found Frozen sandals at Payless this week that fit over Jilli's leg braces. We might have done a happy dance in the store!

I am trying to focus on the positives while still fighting and being informed about healthcare. It is not easy. There is a part of my brain at a war for knowledge over sanity so I am trying to balance.

Advocacy- how it worked in our tube situation

Advocacy- a fancy world, but something that I feel like is my day to day life at this point. Sometimes it goes well, other times it does not go how I would like but in relation to the girls tube brands it has worked so I wanted to detail the steps that I took to help the girls get the tube we feel is best for them in case others are advocating for their children right now too.

1. First when they first brought Lydia to me with the other tube brand I asked them why and asked them to explain their thinking to me of why they made that choice. I express to them calmly why I thought this was not the best choice but they told me there was nothing I could do.
2. I researched different brands. This is something I had done before as well. Since my kids are in the tube feeding world I feel like it is my job to know as much as I can about it.
3. I got other professionals involved. We talked to our PT and she agreed with where we were coming from. She then called GI and IR as well to give them her professional opinion. We also talked with our ped who understands the medical level but does not directly manage tubes so she personally didn't know about the brands but I listed my worries to her and she was able to back me from a medical standpoint.
4. I teamed up with someone who could help. In this instance that was our GI doctor. She knows my children well but also gets a say in what happens with feeding tubes. While she is not over IR she is someone that they have to work with because they share the same kiddos. They manage putting the tube in but she manages what goes into the tube. She called IR to contribute to the conversation and voice her medical opinion.
5. I talked to IR myself. It was a calm and collected conversation. I had done my research. I had made my observations. I was confidant in why I had to say. But I also listened. It was a conversation.

In the end it worked. My children will have the tube that I feel is best for them.

Here are some things that I find effective in advocacy-

1. Staying calm. Its ok to be frustrated but we communicate best when we take a deep breath
2. Talking it out with other professionals.
3. Talking to friends with kiddos who do and don't have kids with special needs. This helps me to bounce ideas and work on my effectiveness at explaining the situation.
4. Get people involved who are able to help. In this situation our Gi had more pull then our other professionals.
5. Having information. It was not just a statement of "I like this better" but instead it was a providing of facts and observations that backed my claim.
6. Being respectful. Most people work hard and are trying their best. Presuming positive intentions of everyone involved helps to have a team mindset. While I have the inside knowledge of my kids the medical professionals have a lot of school and perspectives I do not.

Advocacy is not always easy. In fact sometimes it is really frustrating. Its also rarely fast, however working together to do the best for others is worth it.

In this situation I am very grateful that we were all able to come together as a team to do the best thing for the girls and hopefully help other people as well.

Advocacy- a vehicle I use to work to get what my kids need

RMH and GI

Its been a busy but productive couple of days.

Yesterday later morning we headed to RMH. With some of our appointments we always plan that there might be more then just the appointment planned. GI is one of those. Jilli had a habit for a while of going to a GI appointment and getting admitted or them taking 4 hours and requiring extra stuff of us while we were there. With it deciding to be winter again in Wisconsin we decided the heading to RM Tuesday was the best plan and then if any curve balls were added to the plan we were good. Thankfully, no curve balls and everything went as planned today.

Yesterday we got to RMH and we checked in. While checking in one of the managers asked Jilli what she was going to look for in the magic room. Jilli said the Peppa Pig camper van. Jilli has wanted the camper van since Christmas but we told her she got plenty of toys for Christmas we were not buying her the camper van. Since then every time we go to the store when we pass by the camper van she would calmly say "Thats the camper van, I don't have it, its on my wish list, maybe it will be in the magic room someday." She would leave it at that. She didn't ask for it. There was never any begging. She just states the facts and moved on. Well after we got checked in the girls went and hung out with Holly while Kirk and I unloaded our car (I was thankful for the help). When Kirk and I were headed to the car the manager came up to me and said there was something in the magic room Jilli loves and asked if we were headed down there soon (when you check into rmh they give each child a token to the magic room. It gets them one entrance while they are there and they get to pick out one toy and one book, typically a volunteer takes you down to the magic room)  I told her that as soon as the car was unloaded we would head down (she wanted to make sure no one else went down before us). We unloaded the car and then we grabbed the girls and Nate and headed to the desk to ask for a volunteer to take us down. The manager said she would take us down herself so we headed down the the magic room. We got in there and sitting on the shelf was the Peppa Pig camper van! Jilli was so excited! It was so sweet of the manager to do that for Jilli! Lydia picked out a Little People pet store. She was so excited when she saw it she squealed!

The girls then played with Coji with Nate for a little bit and then we headed to the room and Lydia took a nap. At 5:00 they had some people come in and they had multiple VR headsets. Jilli and Nate were excited! Brent got to RMH and helped Jilli to do the one VR. They had a blast. Then we headed to dinner. One of the women serving dinner uses a wheelchair and that was amazing to Jillian. The woman was so sweet and came over and talked to Jilli and played with her. Jilli talked to her about wheelchairs. Just talking to an adult with a wheelchair was amazing for her! We then headed to art therapy. She was so excited to see the art therapist. Jilli and grandma went shopping and got some new art supplies for the art room and Jilli was so excited to give them to Ms Holly! Art therapy was all full of kids Jilli's age (the big kids were still playing with the VR stuff) and they pretended to be dinosaurs. They traced, cut out and colored dinos! Jilli loved it. Jilli and Nate then played with their Cojis again and then headed to bed.

This morning we got up and headed to GI. Lydia's weight is looking good. Her weight for length had gotten very out of proportioned for a while but is starting to level out. Lydia does need more fluid in her diet though so we are going to start mixing 2oz of Pedialyte into her formula mixture to give her extra electrolytes and fluids. She also said that while we are at Disney to run the girls on water or Pedialyte during the times they are not getting their formula so they don't get dehydrated in the heat.

The nurse came in and smelled Lydia's stomach drainage. Of course today it didn't smell much but I told them about how on Monday it smelled so strong people could smell it walking past Lydia. The nurse said she would talk to the dr but she had never smelled anything like that before.

The dr came in with a student. The student walked in and said that he thought we had met before. I recognized him to but was not sure from what around the hospital. The dr commented that it was sad the random students knew us because we are all over. We all laughed. We talked about the smell. We decided to try Lydia on Flagyl to see if that helps. If not we have a plan. We are also going to start Lydia on the same laxative as Jillian because we know it works for what they have going on. We are going to start a probiotic in Lydia as well. Jilli has been on one for a long time and we feel that it has helped. We also talked about starting Lydia on the mito cocktail when she turns one (Jilli is already on it)

She asked about overall diagnosis and we talked about genetics. I told her the neruomusular is looking at doing another muscle biopsy on Jilli and do them every so often to watch for deterioration... the GI dr looked at me and "no, there will be no deterioration" our GI roots for our girls so much. She has been around Jilli since she was 13mo old and has been one of her biggest medical advocates. She is invested in my kids and her comment of no deterioration was a true deep want for there to not be any deterioration because I think it would be hard on her too if the girls start to have more muscle deterioration. She also asked me if we were having any more kids... we laughed and I said no!

We then talked about tube brands. I explained my frustrations to her. She said she would contact people and she would see what we could do because she agreed that an AMT tube for my girls is a better plan.

We then headed back to rmh. The girls played with Nate while I cleaned the room and then we headed home. We had a meeting at church tonight and on the way there the manager of IR (not the head guy we find frustrating) called me. She said the our GI had sent her a message about the tube brands and she was calling to talk to me about the brands. It was a very productive conversation were she listened to what I had to say, she understood where I was coming from and agreed to do the right thing for my kids. She apologized that I have two kids with two different tube brands and that it should have been thought out better. She said she does not understand why they put a 16fr in Lydia when they have 14fr (mic key tubes smallest size is 16fr but AMT is 14ft) especially in a baby that we were bending the 10kg rule for. She agreed with my worry about the ports and the fact the the anti reflux valve on Lydia's is already broken. She said that at next tube change out that we would switch Lydia to a 14fr tube and they would make sure that they have 14fr AMT g-jet tubes on hand for my girls!!!! She is also going to look into the brand switch more and look into why they can't carry both brands and use what works best for each individual child. This is awesome, not just for my kids but for all the kids they serve! I had a huge smile on my face when we got off the phone! This is what productive advocacy looks like. There was no screaming, yelling or name calling. There was productive conversations, and providing facts and observations. I talked to the people I needed to talk to and took the proper steps. It doesn't always work but this is one of those times where working hard at this really paid off and hopefully this will help other children too! I know something like tube brands might sound small and silly but I feel like this was a huge win for my children and I am thankful for the professionals that worked with me to make it happen!

So the last two days have been busy but they have been good! The girls both had a great time at rmh and we have a good plan for Lydia from a GI standpoint. I like plans and I am happy that as a team we were able to make one today to help Lydia with several of the things that she is having a hard time with right now. A very productive few days!

The girls playing in a laundry basket Monday morning

Lydia and a laundry basket at PT

She has two top teeth through and working on two more!

Lydia and her new toy!

Jilli and the camper van

I love this little outfit!

Little miss turned 9mo old this week!

Jilli and Nate playing Coji! Those two are a lot like siblings!

Nate using the coji to help Lydia work on crawling

My sweet girl!

Nate and Lydia!

VR Jilli

I love this pic of the two of them!

Jilli and the art supplies

cutting out her dino!

The girls decided they wanted to ride in the wagon

more coji time

She got Coji as a Christmas gift and it really getting good at working it

We loaded a baby app on the ipad this morning and the girls played together while I had breakfast

Jilli was not thrilled to go home... she loves RMH!

We are still looking for a couple more people to help serve dinner at RMh the Saturday before Easter. Contact me for more info!

How we pray

***I want to preface this with this is how we feel in our situation based on our understanding of the Bible. This is not saying that you are wrong if your situation is different***

This morning the 4 of us were in our new van headed to church. It is rare that the 4 of us drive to church together because Brent is often at church before the girls are awake on Sunday mornings. Brent and I were talking about the GI appointment we have this week and what we needed to go over. I said one of the things we need to talk about is Lydia's poop. Jilli in chronically constipated, it is a part of the mystery but she uses daily laxatives so she is able to poop. It is not a perfect balance but over the last 4 years we have figured out a mix that has worked for her. Lydia's poop has always been ok. Its always been thicker then Jillian's but we have slowly noticed it becoming more of an issue. It is now March 12th and since the 1st she has only pooped 4 times and none of them have been normal for her. As Brent and I talked we knew what we need to discuss with the doctor. We have known for a while that this would likely happen at some point we were just happy how long it was holding out (this happened when Jilli was 4-5mo old and Lydia turns 9mo this week) but at the same time it still stinks. I was hoping it would hold out longer. I looked at Brent and said "It really stinks watching your kids' body systems each start to fail more." He looked at me and responded "we will just keep supporting the system as much as we can until there is a critical failure." Brent is a computer guy, the way he worded it is how his brain thinks. The reality is our children have multi system issues. Issues that are not getting better as they age. Some things we learn how to better support, some we learn how to put out the fire faster but we are not blind to it all and we realize the reality that our kids bodies struggle and sometimes the future really worries us.

We got to church and the message was about Psalm 78 where it talks about how God would provide for His people and then they would turn around and ask what God has done for them. It reality we all do this in different situations in our lives.

When Jilli first was hospitalized Brent and I sat down and had a serious conversation. We knew whatever was going on was something bigger then a quick fix. We looked at each other and decided that we could either live in sorrow or choose to find the joy. We choose joy. It is not always easy and it doesn't mean that we don't get frustrated and tired but we try to always set our eyes back to joy.

This has also shaped how we pray for the girls. After reading the Bible and discussion Brent and I chose to pray for the girls by asking God to use them for His glory. We do not pray for total physical healing. Let me explain why:

1. There will never be total healing here on earth until Jesus returns. The world is broken. That does not mean that we should not do everything in our power to live in alignment with God's will and live in such a way that points people back to Him (that includes taking care of the sick, orphans, widows, hurting ect) but it means that here is not going to be perfect.

2. We believe that God can use ALL things for His glory. This is not the same things as God going out to cause you pain, He is a loving God, His will is not for your harm, it is for you to know Him. But Romans 8:28  (side note that is one of my LEAST favorite Bible verses, not because I don't believe it, I fully do, but because of how people try to twist it) tells us that God works all things together for the good of those who love Him. God's definition of good and our definition of good do not always look the same and sometimes in the moment something does not look good to us but it is. We also tend to like to look at life as just about us and forget that everything we do impacts other people. We have seen over and over how God is using our girls right now to impact His kingdom and several of this things would not have occurred without their medical needs.

3. When you focus your eyes on one big resolution it can become easy to miss God in the everyday just like we talked about in Psalm 78 it, is easy for us to forget the things that is doing in our lives. I know me, and if I continuously prayed for healing then I would miss the things God is doing right now. The ways God is using the girls for His glory and I don't want to miss that. I don't want to get caught up that I miss all the amazing things He is doing, instead I want to continue to seek ways that I can be a tool He uses for His glory.

So what do we pray for:

1. Answers. We pray that God reveals answers that we need when we need them and that we have eyes, ears and hearts that are listening. I will fully admit that it frustrates me so much after genetics appointments when they tell us yet again they don't know what is going on but I try hard to focus myself back to God's timing. So we pray that God gives us the knowledge we need at the time that we need it to best care for the girls.

2. That He uses our lives for His will. This is a continuous thing. This is not an event that happens once but instead many small and large moments.

Now I don't want you to think that we don't care about the pain that our girls go through or that this all is easy. We care deeply for the girls and work hard to do everything that we can to help them. My full time job is their caretaker and advocate. 5:30 on Friday night I was talking with the wheelchair place asking them why in the world they are no farther along then writing her name on the form (ie nothing has been submitted to insurance, we still don't have the trial chair, they have not started making her chair) This week we see GI for Lydia and I will work with them on how to make pooping better for her, and the strange issues we are having with her stomach bile (it changed smells and is worrying everyone, stomach bile of someone who is NPO should not have a sweet chemical smell). It is not that we don't focus our prayers on healing because we don't love our children, no instead it is that we love our children so much that we pray that God uses them for His will and if healing is in His will then we will celebrate but even if there is not healing on this earth we will still celebrate because God is good and using us for His will.

This journey is not easy, the Bible does not say life will be, but we have God and many amazing people walking along side of us. 

This peanut is working hard and figuring out how to crawl!

Yesterday the train barn at the zoo was open for tours and Jilli had zoo class up there anyhow so we took time to look at one of her favorite things at the zoo

Thankful

This morning I posted a picture on facebook... my facebook memory from 4 years ago today. The caption said "Looks like we are going home today. Jillian gained good weight yesterday. To achieve that goal we have put a feeding tube in to give her nutrition all night long." It was my first post after Jillin got her NG tube, it was in our first 24hours of having a tubie.

We knew it was what was best for her. We had spent 3 longs months trying to get food in her and had just spent 8 days in the hospital failing to meet her nutrition goals. We didn't know the road ahead of us. We had a young attending who just kept saying the tube would be for two weeks at most, infact I don't think the attending wanted to place the tube, but the GI on call made the choice (he talked with me first, and let me ask questions and discuss options). I knew in my heart that it would be more then 2 weeks. I knew whatever was going on would not be solved in two weeks. I kept thinking that hopefully by a year she would be tube free, and then at 7mo when we put her GJ in I thought, maybe by kindergarten and now she is 4 and honestly she will probably have the tube forever, and thats ok.

I will be honest. The past month has been hard. Between Jilli having croup, the 8 days at RMH/CHW and then last week Lydia decided to throw us all in another spiral when her stomach acid started to have a strange smell. It smells almost like a harsh chemical that someone has tried to make smell better by adding perfume. Its a strange smell and a smell no one on her medical team has interacted with before. Its been lots of messages and phone calls. The thought right now is a fungal infection but the problem is the meds for that interact with other meds so we are trying to figure out better ways to treat it. Then there is Jilli's wheelchair. They were supposed to bring us a trial one because we have to do a two week trial before insurance will approve it but they still have not brought the trial chair so I am trying to figure out what is going on with that. I was really hoping we would have the for zoo class this weekend.

But even with the frustrations and the hard things (just got a message that insurance denied the dysautonomia testing that we did a couple of weeks ago...) there are still many things to be thankful for.

I am thankful for the doctors who stepped in and helped Jillian and thankful for the doctors who stepped in and helped Lydia.
I am thankful for the friends I have that listen to me when I am upset and help to be a sounding block for me.
I am thankful for the family that we have the sticks by and helps us when we need it.
I am thankful that Brent and I are in this together. That we are a team.
I am thankful for all the therapists the girls have had and will continue to have that help them to learn how to use the many skills they have (Lydia started a makeshift crawl this week. She has only done it twice but she is working so hard)
I am thankful for my new dentist as I had my first teeth cleaning and tooth work done with her this week and she is amazing!
I am thankful for a new to us van that helps us to reliably get to and from all of the places we need to go.
I am thankful that God has us through it all
I am thankful for our house to live in, even on weeks like this when it is a mess
I am thankful for the insurance we do have
I am thankful for a church family that loves us
I am thankful for Ronald McDonald House and all they do for us
I am thankful for a sweet friend who sent us a box this week with books for the girls and coffee!
I am thankful for the ability to blog and express my feelings
I am thankful for comfy cloths because some days comfy clothes are good for the heart
I am thankful that the pizza place had half price pizza last night and we got enough for a couple meals because I am worn tonight and that makes life easier
I am thankful they Disney podcasts I watch because they make me happy
I am thankful for diapers because as I type I can hear Jillian is pooping (Lydia is on strike from pooping, to the point I am starting to get worried, she pooped last on Monday!)
I am thankful for feeding tubes because it makes it so my kids can safely get the food they need
I am thankful for oxygen
I am thankful for power because we were without it for a while yesterday with the wind storms
I am thankful for the readers of this blog
I am thankful for so many things

There is always something to be thankful for. Even in long stretches.

Thankful....  

Why is health insruance not an easy fix?

Why is fixing the healthcare issues we have in this country not easy?
Why can't everyone just have healthcare at a cheep price?


There is no simple answer to healthcare because in the reality we want two opposites, just like many things in America (want walmart prices but we think walmart employees and company should not get subsidies to keep the prices that low, we get mad at walmart workers when they need welfare programs but yet we demand lower prices) Its the same thing in healthcare. We want amazing but we want the money to come from the sky.

Now I get that there are people in this country that don't want kids like mine to have healthcare because of multiple reasons, many of which are rooted in hate, but I'm going to segment them to the side and pretend like they don't exist for this post, partially because thinking about them makes me feel ill and angry. 

Now, we want healthcare and we want it cheep... but here are the issues where those two things collide:

1. Doctors cost money. Yes there are some costs that need trimming like I still struggle with the fact that our insurance is charged over $4,000 when a feeding tube is changed in one of my children,  a procedure that is relatively quick. I think it is obviously worth more then $100 but I struggle with $4,000. However in many cases the charges for a doctor can be justified. We have to pay doctors a good wage for all of the years of medical school and all of the work they do. I honestly had a doctor writing me back late at night recently just to make sure my kid was ok. Many work weekends and holidays. It is not an easy job. And doctors are not a single player on a medical team. There are so many people that go into making a hospital work. As someone who spends a lot of time in hospitals I see all of the dedicated people working hard to keep my kids alive. Those people need to be paid and those people deserve to be paid well for the work they are doing. We get people from counties all over the world that are doctors here. Some of my children's best doctors were not born in this country but they are people that I am thankful for every day. To attract these doctors though we need to pay them. There needs to be an incentive.

2. Medical equipment is not cheep. Much of it can not be made in as large of scales as other things. We ordered Jillian's wheelchair last week and it is being customized to her needs but that also means that it takes more time in a factory to make it. Jillian's leg braces are made specifically for her legs. Making medical equipment for people is not a one size fits all and that increases costs.

3. Not everything has a simple fix. Most people think "I'm sick, I will go to the doctor and be better soon" but read this blog for a while and my kids will show you that is not always the case. Sometimes it takes lots of doctors and lots of specialists. We talk to someone one our medical team at least once a week. I was joking with a friend last night that it feels like talking to someone in our medical world is always on our to do list. If you have strep throat there is a guess of a cost, a dr visit, throat swab and antibiotics. With strep you will likely be fine soon and go on your way, but not everything is as simple as strep and many conditions take many dr visits and each time those cost money.

So we want everyone but we want cheep... but here is the problem, not everyone's healthcare costs are cheep.

Before ACA you had high risk pools which on paper sound ok for people who do not have underlying conditions, however the people that are in the high risk pool are having to pay crazy amounts because everyone with high medical costs are pulling from the same account and therefor more needs to be put in. The problem is that the people in high risk pools are already paying so much for medical stuff on top of insurance that it is failing the people that need the insurance most.

The idea behind insurance is that everyone is in the same pool and in thought we all share each others health costs. In reality the thought behind insurance is very Christian, loving one another and helping each other out. But a problem is also that insurance companies exist to make money. Making money at the root is not a bad thing. I like it when Brent's paycheck hits our bank account, but money can also be the root of many problems. Money often causes people to want more of it and for you to get more someone else has to get less. That is how it works. If it didn't work that way our currency would be useless. Countries have tried mass producing money before and their economy collapses. If you have an infinite amount of money then the value of it goes down. We do not have a treasury that just pumps mass amounts of dollars into circulation therefor if you have a dollar that means someone else does not. Once again that is not a bad thing, you need dollars too to pay for housing, food shelter and yes healthcare. But the problem with most companies is they like to make money despite who it hurts. Companies are not people, they are money making (or loosing) machines. That is their purpose. But it is people who are the receivers of the money and money does crazy things to people, so one of the hard things about health insurance being run by companies is that they will always be looking for how to make a profit, that is how businesses work. But in the world of insurance children like mine do not help them to make a profit, therefor they are going to charge more to everyone to boost their bottom line.

I understand health insurance is expensive. We pay for it too. We also pay for many things a month that health insurance does not cover that is medically necessary for my children.  I also understand that by percentage the cost of health insurance rose more while Bush was in office in the early 2000's then when Obama was in office. They are going to keep raising prices because they can. Just look at what the CEOs of health insurance companies make, they are not hurting. I understand it takes a lot to run a health insurance company and those people need to be properly paid for their work, I don't question that at all but the amount they are being paid while life saving things for people gets denied makes me scratch my head.

I am not a person that wants government regulation in everything but I know that in some areas for the benefit of society we need it. So here are some things that I think need to be in healthcare regulation and government programs to make it so insurance works best for us as a whole:

-coverage of pre existing conditions. It is not my children's fault they were born with a genetic disorder and not giving letting them have health insurance because of it is cruel. I have been an uninsured adult before because of a pre existing condition of asthma. I was watching a news clip the other night of a baby who was denied health insurance before ACA because his body mass index was high for an adult... he was a baby! When you start picking and choosing who can be covered you are saying health insurance is only for healthy people which does not make sense, you are excluding the people who need it most. Also, anyone at anytime could have something come up in their life that then qualifies as a pre existing condition. You could go to the dr tomorrow and be diagnosed with something, just because you don't have a pre existing condition today does not mean it will always be that way.

-No limit on total dollars spent. I am talking about life time maxes. Before ACA it was not an uncommon story for someone to have cancer and hit their lifetime max very quickly and then there is no one to pay the bills for the treatment. These were hard fast numbers, once you hit x amount they paid 0. Once again any of us at any time could have anything happen that makes us hit that x, just because you are "healthy" today does not mean you will be tomorrow.

-HSA can not be used a your main healthcare source. To have money in an HSA you have to put money in it. That is how they work. Last year just one of our children's medical bills cost over $100,00... we don't make that much in a year therefor we can't put that much into an HSA. It just doesn't work. All an HSA does is take your own money and make it tax free when using it for healthcare. There is no magic that happens there, what you put in is what you can pull out.

-Block grants don't work. This has been proven over and over by independent financial analysts. The only place that block grants are good for is the federal government. They put more of a strain on states and they hurt the people who are needing the services provided by medicaid because what happens when that money runs out in July!? People just don't get health insurance for 6mo? This works if this budget item was for recreation, you spend all your vacation money in July you get no more money, logical, we do this with Jilli, you have x amount to spend once it is gone it is gone. However healthcare is not that simple. Healthcare has costs that are not always planned. I was not planning for Lydia to go into IR last week but it was needed. My other concern with block grants is congress keeping up their share of the bill. If you look into some of ACAs issues you will find that part of it was due to lack of funding by a republican congress. They are not to blame for every issue but they didn't pay the bills, making a law that requireds funding and then not paying makesthe law rather pointless. Its like me saying I want a million dollar house but not paying the bill and then getting mad when I can't have the house. Their votes have showed that they don't want to pay to fund healthcare programs but that really worries me when it comes to block grants because who says they will increase with rising costs? Who says the pot of money with actually be funded? Safegards need to be in place to make sure this money stays around because congress is really good at dipping their hands into pots of money for other things.

-We need to keep preventative care. Paying for someone to receive preventative care has been proven over and over and over again to be cheaper. Logically that needs to be left alone.

-ACA mandates that women who are working must have time to pump and a place to do it. We have no paid leave in this county causing most women to have to go back to work quickly. There are many benefits of breast feeding and it is cheaper then formula feeding (not saying formula feeding is bad, both of my children only get formula at this point). If we say women need to get back to work but are also telling them we need to breast feed then we need to give them a place to pump. That is only logical.

-We can not charge older customers 5x more for health care. They have been paying into the system for a lot longer time then younger individuals.

-Tax credits are not the same as the subsidies. There is a difference and we can not act like they do the same thing or help people the same way.

-I understand states rights. Just like it would be stupid for Wisconsin to spend a bunch of state money to make protections from hurricanes and Florida to spend a lot of money on snow plows, but at the same time is we are going to be a unified country there are some things that need to be a bottom line on healthcare issues. States that are poorer are less able to fund programs for healthcare for poor people which then in turn propels the cycle of poverty. We have to work together on things. Just like no states should be able to say that people who are not white should not be able to attend school, we need to have federal protections to make sure that everyone can get adequate healthcare.

-I worry about the thought of providing $100 billion over 10 years to states who lower healthcare costs. I am all for not spending what does not need to be spent but at the same time I worry that this incentivizes cutting life sustaining services to people. I get the thought behind this but I also get how it could do a lot of harm.

But as a leader of our country recently said, healthcare is not easy (although I find it ridiculous his claim that no one knew how hard it was). We need to find solutions that help people. Right now ACA has many things right. There are some issues, I'm not blind to that, but a lot of those issues are funding issues and insurance companies acting like companies. There is not a golden clear cut answer for health insurance. People's lives depend on it in this country, but often we think about it in terms of me. I understand that because of my children's healthcare costs the cost of everyone's healthcare is going to be higher. I get that and am thankful for everyone who pitches in. But if your children became sick tomorrow you would want the same thing correct? Most people want cheep health insurance for themselves and want it to cover everything but the fact is that the math just does not add up. Health insurance is something we need to work together on. We all pay in, we all help out and we all keep insurance companies accountable. We each try our best to make sure insurance is not being charged for things that are unnecessary because keeping costs lower help us all. But at the same time we need to be logical and we need to think about this world as an us. You do not live here on an island all by yourself totally unaffected by everyone else. God made us to be interdependent and to love and take care of one another. We each need to do our part in that.

So I keep hoping that anything that comes from healthcare reform is logical and for the people not for the pockets of some. I read and am informed about what is going on even though some days it raises my blood pressure. I write to Representatives. Healthcare is not an easy fix but I bet you if most of us sat down and talked about it most of us would agree on most things about it. Most of us are for most parts of ACA. So I challenge you today, read what all ACA covers, because it covers a lot more then you probably think, and then contact people about it. Be respectfully vocal. But don't say this doesn't effect you and bury your head because while it might not effect you today it will someday.

We need healthcare that works for the people. If we are going to leave health insurance in the hands of companies that we need to protect the people because the root of business is making money but in many instances what is best of the people when it comes to health insurance is not what is going to make the most money. We need to join together and set standards. One of the good things about this past month is that many people are learning what all is in ACA. So many people hated it just for its "name" Obamacare. Really many parts of ACA has things we all agree on and many of the things that people are worried about it either are not in there or are so exaggerated what people claim is not the truth. Remember both sides like to bend things to best suit them. I watched a video of a town hall recently and watched as a republican claimed things about ACA in such a way that they were intentionally fear mongering and that is not ok. I don't care if both sides do it, it is not ok. It goes back to the mom saying of if your friends are jumping off a bridge are you going to follow. We all know the logical answer to this question but we loose that logic someplace when it come to people in public office, we claim that they all do it in a way to justify why the person we like does it. First of all I don't believe that every last person in public office does it, I believe there are some upstanding people on both sides, but the ones that do do it get away with it and think it is ok because we come to their defense. What if we held the people we voted for accountable? I don't want skewed statistics. I am not ok with being lied to and this most defiantly applies to how we as a country handle health care.

So lets work together. Lets love one another. Sometimes in reality that is going to mean you pay more to help others, but in reality what goes around comes around. There are going to be times you need help too.