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. http://www.cjengo.blogspot.com/2015/02/only-love-judehardest-blog-i-have-ever.html

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. 


Wednesday, January 27, 2016

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. 


Tuesday, January 26, 2016

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.

Monday, January 25, 2016

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. 


Friday, January 22, 2016

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.