Monday, February 29, 2016

Is he sick?

Jude is having very rough evenings lately. We are seeing an increase in seizures and rigidity, a decrease in oxygen, and an increase in crying. This resulted in a stressed nurse and more this weekend. Luckily last night he was a bit better. 

We really aren't sure what's going on with Jude. It's always a question on if this is something neurological, or if Jude is getting sick, or just deteriorating further. We have an RN that comes on the weekend and she believes he is getting ill so does our regular night nurse. He still ran an intermittent fever throughout the weekend so we will see.

Mike and I are going to take a little weekend trip away at the end of March. I think we need a little time together.

Thursday, February 25, 2016

Can he come out and play?

When I got home tonight Emily told me one of the neighborhood boys rang our doorbell and asked, "can he come out and play?". Emily said she just replied "I think you have the wrong house!". She said when he left she just said "ouch".

Things like this happen but it's the first time in awhile we felt breathless.

Tuesday, February 23, 2016

The Appeal

I am happy to report that we won the insurance case upon appeal. They are having to retro Jude's coverage and take care of the skilled nursing from January on. The nurse also apologized and said the case never should have gotten as far as it did. She said looking at the file it was apparent Jude's condition warrants skilled nursing. 

I am thrilled. We pay for private insurance for a reason and that company should not be denying applicable coverage only to have it sent to the state to pay. I would mention that I hope we never have to go through this again but I will just polish my armor because I know we will. 

Friday, February 19, 2016

My take on the healthcare problem.........

I decided to write another blog today after a family member posted that they went to pick up their prescription today and her out of pocket expense was $700. I know many may not agree but this is just my view point. 

I work in the insurance industry on the property and casualty side. I hold various licenses and have a lengthy educational background in insurance. I have worked in claims and on the agency side and enjoy making sure that people are covered in case a catastrophic event should occur. My first priority is to put my clients as close as I can back to the position they were in prior to their loss. I believe that some of corporate America is trying to dissolve the personal relationships agents have with their customers by combining all servicing into one central location. However we are still standing and I enjoy taking care of my clients. With that being said I feel like America has failed on health insurance and health care side. Although I am grateful for the amazing coverage and assistance Jude has received I can see a huge breakdown and something needs to be done. 

I would like to give you some examples. When Emily had pneumonia is 2015 I took her to the  medical center by our house. Luckily our visit was quick! The doctor was in the room for 10 minutes and she was diagnosed and orders were given for a breathing treatment and antibiotics. Yesterday I received a bill for the 20% co insurance that we would owe. I noticed the original amount billed to our insurance for the doctor (just the doctor) was $1353! That equates to $135.30 a minute for his services. Although I am grateful for his treatment I think this is in excess and I am challenging the bill. Another example of the level of issues we have is Jude's wheelchair. When a durable medical company visits your home to fit your child for a wheelchair you are eternally grateful they are there and don't want to complain in any fashion. Therefore it's taken me years to speak up about this. Jude's wheelchair is customized to fit him, non powered, and has a tray that is removable. It's a nice wheelchair but seeing that Jude has primary insurance and Medicaid we rarely see what's billed. So when I received a copy of the invoice in the mail the $12,000 price tag made me gasp. I understand medical equipment is not cheap but the sheer cost of these items are causing tremendous issues with state financials and the health insurance industry. I think if a cost analysis was done on the materials and the actual assembly of the chair the cost would be far less than the billed price tag. 

I remember when Jude was first diagnosed with his seizure disorder they labeled them infantile spasms. The first medication they suggested we put him on had a price tag of $25,000 a week and carried a 30% mortality rate. However they widely praise the medication and suggest if for children that have the chance at a normal life. I remember my cousin was sitting in the room with us when the doctor suggested told us about the medication. She blurted out "Good LORD what is it made out of 24 carat bald eagle sperm?". Excuse the crass comment but it was rather hilarious and even the doctor laughed. The doctor mentioned how over inflated price tags are put on highly coveted medications and explained it had bothered him for years. Doesn't something seem wrong with that? I also want to add that I know many health care workers are very underpaid which is baffling when we look at the invoices received. 

I have to admit that I am not well educated on the regulations and politics regarding hospitals, durable medical equipment, the pharmaceutical companies, and the health insurance industry. I do however think there is a huge problem in America that needs attention. Attention that also should include having better continuous care for our elderly and terminally ill without the hassle of constant appeals, denials, and harassment. From a consumers stand point I see the affordable health care act has it's positives such as adding maternity and providing care for those with pre-existing conditions. However, as a consumer I also first hand experience the health insurance companies response to the changes with constant denials and lengthy appeals. I see single mothers/fathers paying for insurance they cannot afford only to have something happen and they cannot afford the deductible set in place for the insurance they could actually pay for. So what's the point of having insurance if you cannot afford it and cannot afford the deductible? The regulated car insurance industry makes sure specific limits of liability are put in place for possible losses sustained. Everyone must carry at least the minimum limits of liability that coincide with research showing the average loss within their state. For instance Texas requires you carry at least 30,000 of bodily injury per person and up to $60,000 maximum then you must carry at least 25,000 of property damage. This insures if you hit another party and cause damage that the company will pay up to these amounts. You can increase these amounts to reduce the risk of a lawsuit in the event you cause damage. Liability is regulated by the state in regards to cost and is normally affordable unless you have infractions that increase the rate. 

So what is the answer? I really have no idea and this is why I am not in politics but I do believe the cost of medicines, medical equipment, and supplies need better regulation. I also believe the cost of hospital visits need better regulation. I believe we spend a lot in health care and most people (not us) see less for their dollars. I believe a lot of that is due to over inflation, waste, and improper billed amounts. I have caught our primary insurance deferring fees to Medicaid even though our plan was then paying 100% coverage. They fixed the issue and refunded the money to the state but I wonder how may times this happens. I have reached out to each possible presidential candidate to see their stance on the medical industry. I am involved on the political side regarding reaching out to representatives that could possibly help but it's a slow moving process. 

Again I don't know the solution but I do know there is a problem. 

A good evening with a bad night

My prior writing mentioned that I had started reading my blog again from the start. That combined with my Facebook memory feeds I realize just how much I have grown as a person. The little things used to upset me so much more than they do now. I have always been outspoken but some things aren't worth the battle anymore. I thank everyone for loving me for who I am. 

Jude had an amazing evening with me. I got him out of his bed and he wanted to sit up in my lap. So I held him as he tried to balance his neck and he was so responsive to Emily talking to him. He would smile and say "Hiiiiiiii" and she spoke to him sweetly. It was like old times and so refreshing to see. However he did get very tired and I am afraid that caught up to him later on. Our Friday and Saturday night nurse filled in last night for us and Jude was a bit of a challenge for her. He cried for hours and I came out to help her calm him down. I patted and talked sweetly to him as she cleared his respiratory and gave him medications. She then crawled into his bed to hold him and he nestled in and calmed down. I then went off to bed to get some rest. 

Jude has good hours and bad hours but we loved the good hours yesterday. Also per my prior post I am working on getting myself out from under water. I am taking baby steps and it's helping. I am learning I am actually pretty healthy but dealing with constant stress and emotional turmoil is going to eventually take a toll. It feels good to admit that. 

The final appeal for Jude's health insurance has been submitted. Let's hope their doctor makes a rational decision. 

I hope everyone has a great weekend! 

Wednesday, February 17, 2016

A Look Back

I was reading back over my blog and I learned so much about our situation. First my grammar was terrible! It still is but at least I feel a bit further educated. The first blog I went back and read was my very first entry. 
I can hear in my writing how much I am wrestling with all the information that we were given. I seem to point out multiple times throughout my posts that the OB kept repeating that Jude looked normal on their sonograms. I think I was negotiating with myself and with God while praying for a miracle. 

Then I moved on to our visit with Dr Payne. wow I was angry. I can read the anger in my sentences. I was also very naive or I guess just ill informed but the doctors were too. It was all a huge guessing game on what Jude's future would hold. They weren't even sure if Jude would survive the pregnancy. We went from being told there was little hope, to there was hope, to maybe there isn't, to okay there is. It was the most complicated roller coaster I had ever been on. 

Finally I saw the post where Jude was born He was finally here and we were so proud. I can tell in my writing that I had gone from angry to acceptance that whatever Jude's situation was we were going to handle it the best we could and love him with all we had. There is literally a turning point in my writing where I can see myself grow as a person. Then as fate would have it Jude had his first seizure Reading back on this post I can see again how much we had grown. We went from being panicked to understanding that something tragic had just happened and we had to deal with it in the best way we could. So we tried to be calm and follow the right path and make the best decisions for everyone involved. 

Then I went on to the blog that I shared regarding Jude's official diagnosis I remember that day. I remember that we knew in our hearts his diagnosis wasn't going to be favorable. Looking back at the entire situation I just kept hoping the stroke had not caused massive damage. I kept blogging that I felt Jude would be okay but I was just trying to make myself believe the positive when I knew it wasn't the case. When the doctor walked in the room that fateful day with an entourage trailing behind him I knew it wasn't good news. The doctor sat down and I remember being so taken by surprised that he was cold and factual. However I now understand that was just his nature and I respect that. From his point of view Jude's situation was severe and he didn't expect Jude to survive past 5. In fact I remember him specifically saying that pneumonia is generally the cause of demise. When talking about your child you just want to hear comforting words but at that time period he just didn't have them to offer. We did switch to a different neurologist that we loved. One that said no one could put an expiration tag Jude but Jude. With that being said again I can respect the other doctor's view point too. I guess that's another part of the growth within our story. 

As my blog continues through the years I definitely can see the emotional highs and lows. I always struggled with wondering why such acute and painful afflictions fall upon young children. I guess I will always struggle with that particular question. I can say without a a single doubt that my children have been the best educators of my life and my husband is my hero. I am blessed that I have had them all throughout this painful but amazing experience.  

Tuesday, February 16, 2016

Emily's Smile Boxes, Jude, and myself

The Valentines Emily's Smile Box party was this past weekend and it was a huge success. We had a large turn out and 200 boxes were made for local pediatric hospitals. Here is a little peak into the day. 

Just is still having congestion issues and he has been running an intermittent fever but as you can see he is still very happy. He knows he is loved and well cared for so he is a happy boy. 

I myself am not so happy. I think in America we have a stigma regarding mental health and people are afraid to speak up. So seeing how I write this blog to help others in a similar situation I am readily admitting this year has taken a huge toll on me. I look at myself in the mirror and I don't even recognize myself. The years of dealing with a high stress intense situation has caught up to me. I have gained weight, I am tired, I soothe myself with wine, the stress is resting in my shoulders, I cringe when I receive medicaid or insurance notices, my fuse is shorter, and I am readily admitting this has been hard. Many people say "You're super woman". I am just a woman. One who makes mistakes, one who gets tired, and one who wouldn't make it without the support of amazing nurses and family. I have come to the conclusion that it's important for moms, dads, and families in situations like ours to get a little mental health therapy every now and then. I also believe that vacations are extremely important in high stress situations but almost impossible to obtain. It's been 6 years since we truly got away. However I remind myself to be grateful for everything I have everyday.  Just know I am not a super mom I am just a person just like you and we all need a little support. You would do the same thing for your children if you were in my situation. 

Friday, February 12, 2016

A real housewife and Jude's update

Someone asked me yesterday if I had seen the pictures that were released introducing the cast of "The Real Housewives Of Dallas". I did see the photo and it even looks like a few of my friends may know some of the cast. Before I start this I want to point out that I understand this is just a reality show. The cast and settings are picked based on popularity and what will draw the most viewers. However when I started thinking about the term "real" housewife I pictured a much different show.

The average housewife in Texas is not extremely wealthy and doesn't live a lavish lifestyle. I started to think about if the show followed just a regular housewife and I have to admit I did giggle a bit. If they watched us roll out of bed with messy hair, putting on last years jeans, last years shoes, and watching us yell at the kids to hurry and get in the car. As we flew out the door late for school and late for work the camera crew would run behind us dodging backpacks and juice boxes. We would try to fit the crew in our minivan that's littered with yesterdays juice boxes and old homework that had escaped the before mentioned back packs. I could imagine them trying to film the inside of the van while children yelled, fought, or slept. Dropping one child off to one school, another off to a different location, and then speeding off to work. Running through the office doors in a frenzy and then sitting there filming you while you type on your computer and answer the phones. Either that or going back home with a little one in tow only to spend your entire day working hard on the house, cooking, cleaning, and more. I don't think the average housewife would make for good entertainment but it is in fact more of a reality than the "reality" shown. I can only imagine if a crew tried to incorporate our beeping oxygen machines and daily routine in with before mentioned scenario. I think the crew would probably throw up their hands and quit. I think I will stick with watching the lifestyle they present of the successful and wealthy. Although we are all successful in our own right :). 

Jude encountered several oxygen issues and heart issues last night and this was new. We have had oxygen drops before and we have had heart rate drops before but never combined. Jude pretty much slept yesterday evening when I got home. He was so comfortable that I hated to even move him to give him his medications or changed his diaper but he never work up when I did. He is still smiling so that's always a good sign. 

Thursday, February 11, 2016


Jude had a much better evening yesterday but is still very congested and rigid. This morning Jude vomited yellow with our overnight nurse. He has had a pretty good day with Charlotte but she said Jude is very rigid or "stiff". She is having a hard time getting him to relax. 

I found out today that the program Jude is under in Texas that provides his services is being discontinued. They will be moved over to a new program that's being managed by one main facility. This may not be a negative thing but after what I have dealt with in regards to nursing I am really nervous. My friend said "We get used to something and then they change it. We have enough to deal with!". It's true and that's exactly how I felt and I realize that may sound a little entitled but I cannot help my feelings. I am one big ball of stress now. 

Sometimes I feel like I am living that movie "Groundhog Day". It seems like once you get an appeal or another situation handled yet another one pops up. It doesn't ever seem like you can just coast in neutral. It's frustrating. 

Wednesday, February 10, 2016

Wednesday's update

The last few nights when I have gotten home from work Jude wants to be held. If I put him down he will become very rigid and cry. I am seeing an increase in suctioning and seizures when I get home too. He may do very well during the day but the evening presents issues. However once he gets to sleep he seems to do pretty well until 5am. 

I did check on him today and Charlotte said he has required a lot of suctioning and he just received Tylenol due to rigidity. I think something may be brewing with Jude but we will just have to wait and see what's going on. He has this normal little pattern he starts following when he isn't feeling well. Charlotte also mentioned how Jude's oxygen levels are starting to become an issue during the day and they never were before. She then pointed out Jude still laughs at Spongebob..........good old Spongebob! What would we do without him and Sesame Street. 

The hospice doctor wrote the final letter for appeal to the insurance company yesterday. I am just waiting on the letter and then the entire case goes up for review. I will be shocked if they do not approve his nursing but I was shocked they denied it to begin with. I have no idea why I was "shocked" because nothing should surprise me when it comes to how the sick are treated. However in this situation and Jude's state it was baffling. We had a fill in nurse on Sunday night and when I told her we were having to fight out insurance company for nursing due to medical necessity. She looked at me shocked and said "WHAT?", exactly. 

Anyway, let's hope Jude's evening is a bit better tonight. 

Monday, February 8, 2016

The weekend update

I ran across this old picture today on Facebook and it made me smile. Jude's cheeks look so pink and healthy and Emily just adores Jude.

My kids have a great bond with each other. However the other night Emily was telling me how it's so odd for her to be around other children Jude's age that can run, jump, and play. I do have to admit that it made me rather sad for her that she missed the experience of having an ornery little brother around. Although I am grateful for the blessings that Jude has bestowed on Emily's life. 

Years ago I had a former client who saw a picture of Jude and asked me what happened to him. I explained the situation and she proceeded to tell me that my ancestors must have done something terrible and I was cursed with their punishment. It took every ounce of strength for my fellow co worker to stay seated and not march into my office and take care of the situation. I just cocked my head to the side and began to squint at her and wondered how she functioned daily. I was kind and just replied that I personally think my ancestors did something amazing because Jude was a huge blessing. She didn't seem to like that answer much. 

Jude didn't have the easiest weekend. When our Friday night nurse arrived she said she heard zero air movement in his lungs and was afraid he was getting sick again. She worked with him and finally got some ronchi sounds. Saturday the fill in night nurse no showed on us which was just LOVELY. Especially since Jude was already not feeling well and was a huge aspiration risk. Mike stayed up with Jude while I slept and then I took over at about 3am. Of course Jude decided to puke and poop for me instead of Mike. Jude thought that was very funny too. Sunday Jude started running a fever of 100.4 and had some significant oxygen issues throughout the day. In the evening he was miserable and nothing would appease him except me holding him. If I laid him down he would start crying again so I spent the better part of the evening holding Jude. We had a fill in night nurse last night and she did pretty well with him. She did end up having to give him some Morphine to help his respiratory system. Today's report earlier in the day was more positive so I am hoping he will feel better tonight. 

Friday, February 5, 2016

It's been a year

When I got home from work last night Mike handed me a letter from the insurance company. I just sighed and looked at the envelope with disgust. Once I opened it and read it in detail I realized they were now denying Jude's hospice care. At first I was a little upset and then I realized this is probably a lifetime cap that Jude has hit. The average adult spends 6 months on hospice when the average pedi spends anywhere from 6 months to 3 years on hospice. So I put a call into the insurance company and reached a woman who was very kind. I could tell she hated to explain that we had indeed met Jude's cap. As I took my nightly walk I began to think of all the people both elderly and young that face terminal illnesses. The people that don't have a medicaid backup and I began to think about how stressful it must be for their families. I thought back to when Jude didn't have MDCP and how our family struggled just to make it. Tragic situations can financially ruin families and that's just a horrible fact. So although I fight tooth and nail to maintain Jude's nursing I am grateful for the medically dependent children's program in Texas today. 

I haven't slept well the last few nights and I am extremely emotional today. Partly from the lack of sleep and the other part knowing it's been one year today since we brought Jude home on hospice. I looked back at my blog posts from this prior week in February and on the 4th this stood out to me. "The ICU doctor also sat down with Mike and myself and talked to us about intubation. She pointed out that Jude could be intubated to where he gets over his illness and is his smiley self again, but he may not. She said there is no judgement at the ICU and that sometimes we have to look at the facts. That sometimes dedication and love means realizing that we don't want our children living the rest of their lives in hospitals. The rest of their lives on medications, struggling, and in pain. She said the older children like Jude tend to start getting more hospital stays and they become longer with each visit. I listened to her with a heavy heart and I knew she was being as kind and as honest as possible. I knew that even if Jude gets better this time...........he has a long road ahead and that road always has the same ultimate ending. So my job is to hold his hand and walk that road with him as long as I have the honor to do so."

I remember how kind the ICU doctor was and how you could tell her words were as honest and forthcoming as they could be. I appreciate how sweet and honest she was. Then I looked back to the blog I wrote when we brought Jude home and I recalled every raw feeling I had that day.

The last year has not been easy but it's been one full of smiles from Jude. We have been blessed with our time with him and he is such a little fighter. Mike and I have struggled with our own depression, stress, and not so great coping skills. We are thankful for Jude's nurses that take great care of him and have became extended members of our family. We aren't sure what the future holds but we are here holding Jude's hand the entire way.  

Thursday, February 4, 2016

A quick little update

Sorry I haven't blogged I have been a bit overwhelmed at work. Jude is doing about the same as he was. He has good days and bad days and the same goes for the nights. His oxygen is still presenting issues and he is running consistently at about 5 liters and up now. Our weekend night nurse said she believes Jude's diaphragm muscles are growing weaker due to all the coughing. However Jude is still smiling and is still fighting and he may be with us years to come. 

Mike and I are both feeling a little claustrophobic in the house. I think this is a natural reaction and we will figure it out. 

I hope everyone is well.