Wednesday's update

I had someone contact me from the health insurance company regarding the appeal. She stated she received two letters of medical necessity from Jude's doctors and was wondering if I wanted to wait to turn in more. She is holding the file until tomorrow or Friday. I told her that I would like to obtain additional letters and I was able to obtain another one today from Jude's prior neurologist. I have also put requests into hospice, his pediatrician, and his GI. Each one seems disgusted that Jude has been denied nursing again and hospice is concerned this will lead to a Medicaid denial again. So basically we are stalled waiting on these letters and then they will submit everything for the appeal. She did clarify that it's given to an outside source but did not clarify if it would be an RN or doctor. 

Hospice went by to see Jude and they said he actually looked pretty good today. He was up in his wheelchair and did not have as many secretions today. However his seizures have picked up greatly. I am anxious to get home to see him today and give him a big hug. Thanks for everyone's continued prayers and thoughts for Jude. 

A little update on Jude

Jude is continuing to have oxygen issues and we have seen a pretty large increase in seizure activity. However even when Jude isn't feeling that well which is evident in the first photo he still manages a smile. 

Hospice is coming out to see him tomorrow for a check up and to let us know their thoughts. Our night nurse did notice diminished breath sounds in the right lung. That's not good because his left lung already gives him issues but like I mentioned Jude is still smiling at us so that's positive. 

He has been a good boy lately. I cut his hair over the weekend and he really enjoyed it along with the shower that followed. Then I gave him a quick break from his oxygen mask and set him up on the bed with our German Shepherd Leibe. She licked Jude's cheek and nudged his hand which he thought was hilarious. It was a very sweet and touching interaction. Leibe was very gentle and kind to Jude and seemed to understand his condition is fragile. I miss other animals that have been in our lives but Leibe is by far the best animal for Jude. We love her dearly.

Um huh???

I am in MUCH better spirits. I was able to get lots of rest and reset time this past weekend and it did wonders for my psche! I did speak to the health insurance company again today to find out what their next steps are in regards to the formal appeal. I had to share the conversation because it's rather laughable. I asked the lady that answered what the next steps were regarding the appeal. 

Her: Well it will be assigned to a nurse and I show that has been done
Me: Wait I am confused. So a nurse makes the next decision regarding if the claim will be approved
Her: yes that's right
Me: So the other day an RN case manager called to tell me our informal appeal had been denied. When questioning her the specifics I was told she was only a nurse and could not over ride a doctor and that it's only the doctors opinion that matters and he had denied it. Yet now you are saying it will be assigned back to an RN to make the ultimate decision. So possibly it could even go to the RN that originally called me?
Her: Yes. 

You can picture me squinting right now can't you? You know you can. I am hoping she was just wrong but you never know.

Jude had a weekend laced with oxygen issues, mucus plus, crying, and vomit. Many remarks were made in jest by our nurses about the denial and Jude's condition. Even though he had some rough patches he gave me lots of smiles this weekend which was wonderful. 

Insurance woes and Jude's night

My stress level is through the roof and I am not sure why. I shouldn't be this upset over the health insurance denial because Jude still has medicaid and his nursing services are still in place. However I feel like an episode of "Snapped" without the crazy killer lady just the crazy lady. My heart keeps racing, I am exhausted, and I feel very on the edge. I guess after all this time maybe the strong has been sucked out of me. My attorney was super sweet and explained that stressing and giving up is what the companies want you to do to you and that's why we keep going through this. I thought this was my second appeal through the primary insurance but it's actually my third and I have fought with Medicaid 6 times now. My attorney said 80% of the families in situations like ours give up and don't fight anymore. Many quit and stay home to care for the children and the children wind up not getting the real care they need. He says he sees it happen all the time.That's SAD! I said before that it's a sad state of affairs when America fails to take care of their sick and elderly. We did our due diligence and paid for primary health coverage only using Medicaid as a backup. My husband has excellent group health insurance but I did find one stand out piece of information this morning. In 2014 the plan had a lifetime cap on private duty nursing but in 2015 there was no limitation listed. Interesting isn't it? My guess is Jude was nearing that cap in 2014 and now they are thinking "Oh Sh*$!". I know it's interesting to some that Jude had this coverage to begin with but again this is not an individual plan. This is a well formed major group health that specifically outlined skilled nursing coverage. Jude had been receiving this coverage consistently and then is suddenly decline even though there was a major deterioration in his health. Makes no sense. 

I think one of the reasons I am on the edge is because I know that since the primary denied then Medicaid will eventually come back and fight us as well. They will see the primary is no longer picking up any nursing hours. However, the last fight with Medicaid involved our attorney, multiple doctors speaking on Jude's behalf, an advocate office, and one irritated Hospice agency. So they may not come after us again. Still the thought of it makes me cringe. Although I am grateful for the coverage Medicaid provides, dealing with a denial is an awful experience. 

I did speak directly with the health insurance company case manager yesterday. She called to explain the decision the doctor made and our rights. I blatantly asked her who the doctor thinks will be skilled enough to care for Jude. I had her admit that a Personal Care Attendant cannot tend respiratory distress, give controlled substances, or work with a GJ tube. Her reply was, "well won't you be there". I explained I work full time but even if I didn't I am not an educated or licensed nurse which means my level of medical care would be a disservice to Jude. Her next comment was "Well you have medicaid just let them pay for it". People wonder why the government is drained. I also verified she was an RN and asked her if she knew what a GJ tube is which she replied, "of course". So I asked her what she would like a care attendant to do if it should accidentally be ripped out. She replied "well put it back in". SIGH! I explained that the GJ tube is surgically placed into the intestine and she replied "Oh yea". Brilliant that they are making these decision about Jude huh?

Last night Jude had a horrible seizure storming incident. I believe it was a build up of pain from the lung disease. This is a video of him after it was over. You can see how he is struggling to breathe and is exhausted. 

Luckily we worked to get him calmed down with the proper medications and treatment. He finally began to rest easily. 

I will get over this. I am just irritated and needing to vent and I am doing so through my outlet. Sometimes I feel I rush to judgement or anger but I guess we are each our own individual and have our own way of dealing with things. I still have no doubt this will all be handled. I think it's just a culmination of Jude's health, working full time, the insurance, bills, and more that have built up. We all reach a point of breaking every now and then.  

Still angry.........

When I got home tonight I was just exhausted both emotionally and physically. I looked around Jude's surroundings and I wondered again how the insurance agency could say he didn't have medical necessity.

 

 

 

Luckily Jude was having a pretty good night so I felt okay getting him on video. Even during a good night he struggles through his chronic lung disease to breathe but this is MUCH better than a bad night.

 

It makes me angry these large health organizations hold people's lives in their hands and make decisions without seeing the patient in person. Jude has Medicaid he will be okay but I am angry for America! I am angry that people on hospice situations have to worry about insurance. It's not right. Emily is confused and is wondering how companies can make these decisions. Anyway, I am done venting on this subject. I am just frustrated today so bear with me.

Jude's oxygen alarm is going off so I have to run. Have a good night.

The insurance debacle and Jude's oxygen levels.

Today while I was at lunch I received a call from our nursing agency. They informed me that after the peer to peer review with Jude's hospice doctor and a review of additional nursing notes the health insurance company still decided to deny Jude's case for in home nursing care. When I heard those words I just felt defeated and sick to my stomach. I am not sure what caused those feelings but I am still very tired and I just want to go home today. Here is the situation...........this is our primary insurance that we pay into so therefore Jude's medicaid backup will still pick up his nursing hours. However, this is frustrating and I try to be a person of good values and this isn't right. I feel in my gut that this must happen frequently to other families and they probably don't have the strength to fight so they throw up their hands and let Medicaid pick up the charges. Either that or they put their families in a compromised situation because they feel they cannot fight the corporate health market. This makes me sad for those families. 

Jude was admitted to nursing on our primary plan years ago. In the past twelve months his condition has continued to deteriorate. So I have to ask why there was a sudden change in the level of care he needs according to the health insurance company if his condition has only worsened? I cannot get any answers. In fact I called again today when I heard the news and got a live nurse who was so upset about the denial she sent me to a supervisors voicemail. All she kept saying was, "Oh I am just so sorry". I understand we are lucky that our primary pays for in home nursing but outlined in their explanation of coverage's it is offered. Therefore Jude should be able to obtain the coverage his deserves and we pay for. Jude's case is so complicated now that I am not sure who the insurance company think would be qualified to care for him. I don't post that many pictures anymore or share video's because Jude just doesn't look well anymore. However, I did explain to the nurses that I will be filming him the next few days. That way I have on hand video of his complicated condition and needs. I just don't understand how much more medical necessity is required? If a child is on oxygen 24/7, requires frequent suctioning due to choking and aspiration, has a continuous feed on through a G/J, needs rescue from respiratory distress with controlled substances, needs seizure control and more...........just shaking my head. 

Along with this I also received a denial on Jude's CPT shaker vest, another authorization for his formula because something wasn't sent in right, and more. Being a special needs mom is hard but it just shouldn't be so complicated or stressful. I feel like companies make your life more stressful and it's just not right. However it is a part of the process and you learn to walk the path the best you can. 

Jude had a very difficult time keeping his oxygen up last night. Throughout the evening I turned his monitors off and then nurse Candice ended up turning them off too. When I checked in today he was still having difficulties but was finally asleep. Jude looks very week to me but he keeps giving me little smiles and that is super sweet. 

Insurance companies make me squint and Jude's update

Before I share this information I want my readers to understand that I know this situation will get resolved. In the end Jude will get the approval he needs but nonetheless this is frustrating. 

On Friday when I got home after a long day at work I opened a letter from my insurance company telling me they denied Jude's nursing........again. The reasoning was as follows, "The request for private duty nursing is denied as not meeting medical necessity guidelines. Specifically the clinical information provided for medical review does not document: 1. medical needs requiring skilled nursing care and (2) a level of care consistent with skilled nursing confinement. In addition, ongoing skilled home nursing is not considered medically necessary for patients who are on scheduled continuous tube feeds. 

At first I glanced at the paperwork and sighed because I thought our nursing agency had not turned in the proper documentation for review. This happens frequently within the insurance industry and denials can be quickly changed to approvals once the proper paperwork is submitted. However I began to look the document over carefully and I soon realized they did have Jude's current information. Jude didn't go home on a continuous feed until he left the hospital on hospice in February of 2015. Then I realized they included the doctor's name they were denying the orders to and it was Jude's HOSPICE doctor. Then I began to squint and utter a few curse words about the stupidity of the entire situation. I called the number on the letter and received a nice man who was obviously on the front lines and just answering the phones. After hearing my plight he turned me over to a live nurse. The nurse was so kind and listened to Jude's long list of medical needs including suctioning multiple times a day (on a bad day anywhere between 40-80 times), continuous oxygen, respiratory distress, and hospice care. I then told her I was pretty familiar with the skilled nursing guidebook due to my issues with TMHP and that continuous feeds are indeed a need for nursing. In fact it states "The individual requires treatment or complex skilled nursing care of an unstable medical condition, including but not limited to treatment of at least one of the following:ii.Gastrostomy feeding complicated by frequent regurgitation, with or without aspiration;"

The nurse apologized profusely and explained that she had no idea how the doctor came to the conclusion to deny Jude's case. She acknowledged they had lengthy information on home. She said the best thing would to be to complete a peer to peer review which I already knew. So basically Jude's hospice doctor will contact the insurance doctor and go over Jude's case in detail. Generally when making these decisions an insurer will request 15 days nursing notes from an agency. They then base their decision off the notes received. In the past 12 months I cannot think of 15 consecutive days that Jude had that were good. So therefore I am not sure what they are basing their decision on. Regardless I know it will get handled. What frustrates me is I know there are families out there that receive these denials and simply accept the denial and do not fight it. I honestly believe companies issue these denials because a certain percentage of patients will not fight the denial or pass away prior to the completion of the appeal. Regardless I told the nurse, "it's insulting and frustrating that my son is dying and your company is denying the best care for him at the end of his life. It's not okay and I expect better for him." She completely agreed. I truly believe that insurance companies and the state need to have field reps to make in home visits to admit or decline a child with complex medical needs to any plan. That may be unreasonable but it's my wish for all families facing a situation like ours. 

Jude had a bit of a rough time this weekend. His coughing is still pretty persistent, he has intermittent fevers, and he is still vomiting some. At many points through the weekend the monitors were shut off because Jude couldn't hold his stats.  However he is very smiley and being good for his nurses. 

Not a good evening and not a good night

Jude was having significant oxygen issues with me during my evening shift. I worked to re position him and give him the proper medications to get him more comfortable. I tried a breathing treatment but he still was having issues. Finally by the time the nurse got there Jude was a little more settled. However that didn't last! At 2:30am the night nurse knocked on our door. We were both in a deep deep sleep and we both jumped out of bed with a scare. Mike ran into the dog crate and probably broke his toe and I was a little bewildered. The nurse said Jude had been throwing up and she was concerned and was wondering if we had medication for nausea. I explained we had the Zofran and so she gave him a dose. We debated on what was causing him to vomit. Mike and the nurse believed it could be the antibiotic but I pointed out it's only once a day in the morning and it's not as strong of an antibiotic like he normally takes. I then pointed out that Jude vomits if he has pneumonia. 

After the scare I never really could fall back into a deep sleep and I went to check on a Jude a couple of times. I am very tired at work this morning and really just want to go home. I called hospice this morning and they are going to go check on Jude and let me know their thoughts. 

Jude's health

Jude has taken a decline in the last few days. His coughing is excessive and his oxygen levels are dipping pretty frequently. He is also pale and rather lethargic. Hospice decided to put him on a Z pack to see if it will help alleviate the persistent cough.  The coughing fits have gotten so bad that he cries out in pain and we want that to stop. His color wasn't good last night and he was so weak he couldn't make a smile although he tried. 

Today nurse Charlotte said he is sleeping and on 6 liters of oxygen his stats are running between 95-98. So that's a decent rate. 

We will see what tonight holds. 

Really?

Sometimes you hit a wall and sometimes it's a really big wall. My poor husband has rammed into that wall head first today. At 3:45am his mother got confused and his dad found her outside in a neighbors yard. She is currently in the hospital having multiple tests run. Mike said he feels like if it's not Jude then it's his father and if it's not his father it's now his mother. A part of me really wishes we had been able to find a home with a guest cottage so his parents could be close to us. On top of this Jude is having some really strong seizures. They are lasting about 40 seconds and Jude turns blue due to lack of oxygen. This is new. Jude always had cluster seizures before that would allow him to take in oxygen. I have put several calls into the neurologist but to date I don't have an answer. 

Oh and the dryer is still broken. At this point I just want to go buy a new one. The company says they will be back out on Monday with the proper part but we will see. If you come to my house just be prepared because there is laundry everywhere, lol. 

The good news is it's Friday. 

Trying not to judge others.

First a quick update on Jude. He is still pale and weak but gives us lots of smiles. He was crying out this morning with Charlotte so she said she held him and then gave him some Motrin which seemed to calm him down. I am also FINALLY getting my dryer situation resolved today so now I have about 15 million loads of laundry to catch up on. Being without a modern day convenience is not fun. 

I am sitting here wondering how to write what's on my mind today in a way that isn't accusatory or rude in anyway. However it is something on my mind and applies to more than one instance. Many times as special needs parents we as a group can feel excluded. Jude cannot travel, he cannot go outside on long walks or to restaurants, and our schedules are extremely tight with him. Therefore holidays, vacations, and other times people meet up are generally not something we can participate in unless people come to us. Sometimes we can participate for awhile but we always have to be back home by 5pm. We do not want people to feel they have to adjust their schedule around Jude because everyone needs to live their own life. However over the years many of my friends and family have found ways to make us feel included despite the situation at hand. Although sometimes we still feel left out and it's not really the participating individuals fault but really just a result of the surrounding circumstance. 

I also struggle with the fact that I feel that since Jude is not "normal" people may not value his life as much as others. He cannot run, jump, or play with you but given the chance he has so much to offer. This may have been Jude's last holiday but hopefully not. I guess because I am so close to Jude's situation I have a hard time stepping back and realizing it's probably difficult for some people to see Jude in the condition he is in. To me he is just Jude. He is simple, sweet, loving and in my opinion one of the closest representations of Gods blessing. When people are around Jude I always hear "there is just something about him and that smile". It's almost like Jude projects so much happiness and peace that you can physically feel it when your near him. 

Despite how I feel I have to realize that everyone is different. Some would have put Jude in a nursing home by now, some would have been a recluse and closed in with him, and others would walk the same path I have. I try not to judge others behavior or project what I would do in the situation upon others but I find that very hard. I am learning to let go and let people be who they are, to forgive what I feel is wrong, and to not be so judgmental. Add that to my resolutions. 

The New Year

Well it's New Year's Day. Jude is still not feeling well and a struggling with a pretty bad cough but we did get lots of smiles today! So I haven't set any resolutions for the past few years. Probably because j have been so immersed in Jude's condition and a bit of sorrow. This year I vowed to make some changes.

1. I plan to lose 40 pounds by 4/4! I did this once before for a resolution. It was after I had Emily and with simple calorie counting and exercise I shed the weight Quickly. I will always think that's the best way to get in shape!

2. I plan to take steps towards Mike and I adopting children out of foster care. We always wanted more children but have been so hesitant due to Jude. So we finally decided to look at moving forward with the steps needed. No rush but just the steps. Don't say anything negative about it our I will kick you.

3. I plan to date my husband more and finally take a vacation with just him.

4. I plan on paying some debt off and look again at selling our house and getting us the land we always dreamed of.

5. figure out my spiritual and career goals.

In other words I still plan on putting my children's needs ahead of my own but I recognize Mike and I need to pay attention to ourselves too. We are planning to go to New Orleans in April for some much needed time together.  I am going to figure out Jude's situation and nursing hours here so he doesn't have to leave our home. I am praying it all works out.

Happy New Year!