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

Sigh

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. 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.