We won Jude's nursing hours back through the health insurance company. I am very happy about this! I believe we should rely on our insurance if we pay for it versus relying on the state. I am thrilled this was taken care of in the proper manner.
Jude has a pretty full February. He is going back to the ortho to have a check up regarding his legs. I am pretty sure they will need to do another round of Botox on him. The therapist said she is seeing more tone so we need a careful harmony of medications to help him out. Jude also has his MRI at the end of the month which will give us an updated image of his brain. I am not sure what all the neurologist will tell us after the image, but I know it will be beneficial to know what his brain looks like now.
Jude also had blood work ordered to check his seizure medication levels. We need to do this every three months to make sure they aren't to high, aren't to low, and that there isn't liver damage. I received the question today if I am in favor of cannabis oil being use to treat pediatric seizures. My answer is 100% yes. If it works for the child and they are able to eliminate the dangerous medications they take then by all means I think it should be used. I am hoping Texas will eventually allow these trials.
The therapists are also considering applying for a hospital bed that raises and lowers for Jude. I know this will be beneficial for him, us, and the nurses however the term hospital bed just makes me sigh. Oh well.
Anyway, it's 74 today and we are expecting snow on Sunday, welcome to Texas. Have a good weekend everyone.
When I was a teenager I thought the worst thing you could ever experience is your own broken heart, but I was wrong. It turns out it's much worse to see your daughters heart broken. I know how she is feeling and I don't have enough band aids to make her feel better. No boo boo bunny will fix this problem and no matter how much ice cream I give her it just doesn't heal the pain. I know like any mother does that a broken heart is only mended with time. I wish I could speed up the days for her, but they will drag out slowly until she is able to make things right within herself.
I have always had issues with friendships or relationships that are built up with trust and feelings and then are suddenly gone. I take my relationships very seriously and a friendship takes a long time to develop. So when that person is suddenly gone the absence feels like a death and it can be very hard to deal with. It's hard to comprehend that the love you had for someone was not the same type of love that was given in return. When it's easy for someone to shut you off when you enjoyed having that person in our life.
So all I can do is tell Emily how amazing she is. That she is perfect just the way she is and that anyone that loves her will accept every single part of her and never walk away!
Jude got up three times last night. Once around 1:40, once around 4:40 and once around 6. Despite him waking up I still got sleep and feel MUCH better! Do I still plan on spending Saturday in my bed? Yep! However, I feel better. WHEW!
The contractor that came out last night was SO nice! His name is Johnny and he works for Reality Homes. I am still waiting on the final bid but he specifically said he believes he will get close to the lower bid that was given to us by the builder not on the list. Johnny is ON the list! He even said "How in the world did two companies come up with bids over $17,000............what the heck were they measuring?" So let's all cross out fingers. Also, for future reference if you need anything done at your house like remodeling, flooring, roofing, painting, etc I highly recommend:
Johnny Pope - 214-566-9625 or Josh with the Ultimate Builders - 972-345-9315
So let's hope and pray for good news today. I will leave you with this picture I got from a visit we had at Scottish Rite. Emily actually got to take her boxes in and interact with the children vs just dropping the boxes off. She loved it and asked several times to do it again so we are going to cooks on March 14th.
This is a venting blog.
I love Jude with all my heart..........I would do anything in the world for him, but I am exhausted. I have had a newborn for almost 6 years and I am tired! Jude was up and down all night last night, again. It's a cycle of Jude waking up, having seizures because his brain is firing from waking up, almost vomiting or vomiting, then going back to sleep. I am so tired at night I fall asleep within minutes and don't spend any time with my husband. Then we get up and go to work then come home and do it again. I get sick a lot from lack of sleep but I have to keep trudging to work. There are days I just wish I would win enough money to miraculously pay off my house so I could SLEEP! The laundry just sits at times because I am just to tired to touch it. I also think the routine is wearing me out plus there are other factors that wake me up too. I know a lot of special needs moms feel this way and you know what? It's okay to say you are tired! I am not going to feel guilty about saying it because I love my son and will continue this routine. I just had to gripe for a few minutes. I literally laid in bed this morning and shed a few tears because I had to get up to go to work. Jude has sedation medication, but it only works for awhile and nursing isn't an option at night. So we keep moving forward. Just remember to forgive me if I am a little cranky this week.
We have another contractor coming over tonight to look at the bathroom and he is on the approved list. He is convinced he can get the job done for the same price as the lowest bid. I sure hope so! It is a light at the end of the tunnel. I also had the other company call back and explain their boss was a wounded veteran and he would help us anyway he can. So sweet. So Nice!
So I am praying that Jude is not getting sick again. I think he is just going through a growth spurt or some sort of cycle. He is very happy when I come home and hold him at night. I think it makes him feel secure. Okay my complaint fest is over and tomorrow I promise to be happier!
It's been a frustrating week. I am so busy at work I can barely breathe, but that's job security. I come home exhausted. I am to tired to work out and all I want is my wine and my bath which makes me fluffy! My husband and I are at each others throats. This happens in a normal marriage but combine a severely handicapped child in the mix and you have some real issues. The divorce rate for a family that has lost a child or had a child handicapped is 85%. Mike and I know this rate so we work hard to make things work. However, sometimes the stress gets the better of us. We get tired, run down, we don't get exercise like we used to, our clothes are frumpy, and we never sleep. However, we count our blessings and do the best we can.
Part of my frustration is stemming from the fact I am still dealing with the bathroom remodel and trying to obtain the funding. There is so much red tape that I am wrapped up so tight into it that I need some scissors to cut my way out.
I had mentioned that we have some funds, but Jude also gets help from the program he is on. These funds will be necessary to complete the project. However, the contractors approved by this program are double the price of what the regular contractors. So therefore I submitted a bid from a certified ADA compliant contractor to a contractor on their list to have them match it..........it was a no go. They just flat out said no. I am so aggravated.........it just doesn't seem right! So yesterday when I heard that very news I just lost it.......and Mike lost it because I lost it. It was not a pleasant scene at all.
So we were back to square one......what do we do. I did find out we could submit our contractor to their plan, but it's literally a Bible thick book they have to fill out. It also can take awhile. So I continued calling contractors on the list and I found one that seems VERY nice and he said he has no doubt he can match the lower bid. However, this just made Mike angry because we have heard this before. So then we looked at trying to sell our house and build a new one with an upgraded bathroom for Jude. However, that seems a no go. My credit score is good, but prior collections are not. They would prevent this from happening. I said I would give full disclosure in this blog and I am. We walked away from several bills when Jude was diagnosed because Mike had to quit his job. However, we struggled and kept our house. We are now in a much better position than we were, but I still have clean up on the credit. We also looked at a railing system that goes over the bath tub, but then there is still the transfer for Jude. We could probably accomplish this through his hoist, but they are not easy to use. His also doesn't pivot. There is just no getting around the fact that the best thing for Jude as he grows is a roll in shower. Do people get around this all the time? yes. However, it's my goal to get one.
Topping things off Jude was NOT himself last night. His heart rate was about 130, he wasn't smiling, and he was toned out. I am hoping this is just allergies or Jude having an off day. We definitely don't want to go through a sickness right now. Charlotte said he was still toned out today so she gave him Motrin. The rest of his vitals look okay so we will just keep a watch on him.
Jude's doctor office called back regarding the nursing debacle. The doctor said in no way, shape, form, or fashion would she ever recommend Jude go without a nurse. They are going to review the information the health insurance company sent and take care of what they can on their end. So that's some positive information.
So I am just breathing in and breathing out. Reminding myself again how very blessed I am and marching on! We have a nice house, good jobs, great nurses, and wonderful therapists.
It seems to be a ritual after work that I drive home down the winding country back roads to avoid traffic and to take a few quiet deep breaths. I pull into my driveway and immediately check the mail. Yesterday when I checked the mail I noticed a letter from our health insurance carrier and it was addressed to Jude......oh dear. We made jokes when we enrolled into Mike's group health that it wouldn't take long for Jude to exhaust his maximum benefits with them. I know it's not a joking matter, but you have to have humor people! He had not exhausted his benefits, but they were denying his nursing based on failure to meet medical necessity. WHAT? (picture me looking at you with a blank face)
I didn't panic when I opened the letter because Jude's health insurance is backed up by Medicaid through the medically dependent children's program. I had to appeal Jude's nursing before through MDCP and we won the case. However, since that time Jude's medical issues have grown very extensive. My feathers were ruffled when I opened the letter, but I wasn't surprised. It seems to be the growing trend since the reform that people are encountering these issues. Both of Jude's doctors I contacted about the situation relayed frustration due to the recent outpouring of cancellation of services. I could simply throw my arms up and let Medicaid take care of the nursing, but I don't believe that is right. We pay into our health insurance to avoid being dependent on the state. We also both work full time so we can pay for the items we need to live, provide a home, entertainment, etc versus again living off other means.
I actually understand this process. The health insurance company employees nurses and doctors to review their cases to look for medical necessity and if there isn't any to deny. Fragile children can be very expensive to take care of and a drain on a company. So in Jude's situation they either didn't obtain the information they needed (doubtful) or they just denied. I remind myself that their doctors don't know Jude, so to them Jude is just a number. So without knowing his case and having his full diagnosis they make a rash decision. What I don't understand is how Jude's case changed from last year vs this year to cause the denial? If anything Jude's medical situation deteriorated with the double pneumonia and empyema not to mention the other hospitalizations. When talking about official diagnosis Jude's form is very long. He had a massive bilateral stroke which caused bilateral closed lip schizencephaly. He is cortically visually impaired, GERD, incontinent, severe hypotonia, nonambulatory, cerebral palsy, g button fed, chronic lung disease, seizure disorder etc. In other words Jude is severely disabled. He needs to be monitored 24/7 for possible aspiration, seizures, and breathing problems. So medical necessity shouldn't be a question. Without constant monitoring Jude would be hospitalized.
This will probably be a fairly simple process. I contacted the health insurance company, two doctors, and a nurse. They will do a peer to peer consultation. If that doesn't solve the issue I will be surprised and then we will go to appeals. However, there are people in our situation who are not advocates like I am. One family was recently denied continuation on the waiver program and rather than fight it they have decided to place their child in a nursing home. This won't ever happen with Jude as long as I am alive.
To follow up on the bathroom remodel I submitted the three bids to get the remodel completed through the waiver program. They provide a portion of the funds and we supply the rest. Two of the bids were from vendors on the list the waiver program provided us and their bids were VERY expensive. The other bid was from a licensed general contractor that is ADA compliant. He had the best rate, but the waiver program wouldn't approve his bid since he isn't an approved vendor through their program. I can understand this, but I also think it just gives the approved vendors the right to charge an exorbitant fee. So we can work on getting him "approved" but this could be a lengthy process or we go through their vendors. I did print out his bids and I gave them to one of the "approved" vendors and ask them to match it since it's the SAME work. We will see what happens.
I am so grateful for insurance and programs in place to help Jude, but sometimes I just get worn out from it all! We don't take advantage of the system. We just want the best care for Jude so it can be frustrating at times.
He is worth it.
I haven't blogged much lately. I have been so busy at work and Jude has been....... WELL! He still has his cough, but it is so much better than it was. Jude has also been making large social strides and I am very proud of him. He is really reaching out trying to communicate with us in his own special ways. I have blogged before that if you ask Jude where a member of his family is within a room he will try to search them out. He cranes his neck while searching the room with his eyes until he finds the person he is looking for and stops. He still does this, but with keen interest! Jude will actually look until he finds a person and he will "speak" to this person until they acknowledge him. In addition he is really getting good at mouthing what he is trying to say. When I come home from work I always say "HI JUDE!" and he begins mouthing "hi".
I had to take Emily to a meeting at her high school tonight and whenever I got home Mike told me that Jude said the clearest "I love you" that he has ever heard. Jude said this to his grandmother Susie. This isn't a surprise since Mike's mom will lay with Jude for hours and hours. She will pat his hand, pray her rosary, and tell Jude how special he is. Jude adores her. In addition Jude (in my opinion) has been paying more attention to toys. Charlotte also sent me a picture of Jude and our dog Spot napping together.
I am so glad that Spot is indoors with us now and he seems to really care for everyone in the family including Jude.
It looks to be an interesting year full of doctor appointments for Jude and Emily growing older. Emily has so many things lined up between drivers ed, school, cheer, pageants, and her medical academy that I am going to be going a bit crazy. I can't believe she is about to drive.
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