Wednesday, July 30, 2014

The Petition

I started a petition today to legalize CBD or cannabis oil in Texas. It will join the hundreds of other petitions I am sure. I want to be honest. I don't believe the oil will help Jude's seizures because they are the strongest and hardest seizures to fight. However, it cannot hurt to try it. In addition there are thousands of children in Texas that could benefit from this natural medication. Here is the link for the petition.

https://www.change.org/petitions/john-cornyn-and-rick-perry-and-texas-state-senate-legalize-cannabis-oil-in-texas#

and here is the explanation I put on the petition

Cannabis oil has shown amazing promise in preventing and curing seizures in pediatric patients. With less than 3% THC the oil does not contain the properties marijuana has for inducing any altered state of mind. If Texas passes a bill then cannabidiol or CBD for short can be used in trials with Texas doctors to help our epileptic patients. Several neurologists in the area have been pushing for this to happen and back the oil being brought to TX.
There have been stories across the US of children benefiting from CBD such as Charlotte Figi in Colorado. Her mother posted the video "Charlotte's web" which obtained national attention. Charlotte would experience up to 300 seizures weekly, but after taken CBD twice a day with her food the seizures were all but eliminated.
My son has a severe form of epilepsy called Lennox Gestaut syndrome. He is currently on Depakene and Felbatol which both carry high risks of side effects. The Felbatol alone has shown to destroy the liver and can be fatal. The likelihood of CBD helping my son is minimal however as a parent I have met and watched so many other children that could benefit from it. Therefore, my husband and I vowed to help those children obtain CBD and hopefully help them live a fuller life.
Above is a video of my son suffering from Infantile spasms. It's not easy to watch but it's the reality of what these children deal with. This was shot prior to his seizures growing into a larger harder to control situation.  Infantile spasms are a neurological seizure disorder that can cause developmental delays and other issues. Infantile spasms are just one of the conditions CBD shows promise in treating. One of the current medications on the market to treat children with Infantile spasms carries a whopping $25,000 a day bill and has possible lethal side effects. We should have the option to try a less invasive medication for our children. Please consider following other states that are passing CBD!

I also listed a video of Jude's infantile spasms when he was little. So if you could stop by and sign then share with your friends/family on social media I would appreciate it. It literally takes seconds.


Tuesday, July 29, 2014

A life lesson

Life can change in the blink of an eye. Not everyone learns that statement the hard way, but many of us do. A life can be taken, a life can be changed, a life can be altered.

We have a habit in America of coming to expect certain sort of lives and when that dream is shattered it can really open your eyes. Along our journey we have met people like us that had every expectation of having the perfect pregnancy only to learn it wasn't. We have met people that expected to have a football playing straight A son and like us........they don't. We have met mothers who are teary when they tell us that their beautiful daughter that was once so lively and happy has been permanently disabled in a car wreck. Likewise we have met those that lost their child all together.

When things like this happen people tend to move through stages of grief. I personally went through depression, selfishness, anger, lashing out, and finally acceptance. I am sure it took a lot of patience from friends and family to see through my actions and understand where they were coming from. Finally you reach that acceptance and marching forward state. I found you move a little slower, you think a little deeper, and you love a little harder. I recently started eliminating activities out of my life. I think I did so much because it kept me busy.......it kept me going, but I found I just don't need that anymore. I am okay with being still and taking in the light of the day that shines on my two kids. I try to stop and think now before I say anything, before I make a move, and before I might hurt someone. I ask myself "is it worth it?".   I am not saying I don't make mistakes because I do. I still go through sadness at times and a profound amount of sleepless nights. This makes one a bit cranky. However, life has a way of changing when you realize what is truly important in life. To me....people are important. We meet all kinds of people in life and some become our friends and some are our family.  I believe you wouldn't become friends with someone unless you saw a little piece of yourself in them. If you saw the good and I think the good can always be salvaged. Sometimes we just need a little understanding, sometimes we need a little break, but in the end if you look close I think anything can be salvaged and that deep down as Anne Frank said "despite everything I believe people really are good at heart".

My daughter posted this yesterday and I am sure many of you have seen this You Tube of Madea, but I haven't. If you look it up on you tube you can research Madea's tree speech.

"If somebody wants to walk out of your life, let - them - go!" 

Some people are meant to come into your life for a lifetime, some for only a season and you got to know which is which. And you're always messing up when you mix those seasonal people up with lifetime expectations.

I put everybody that comes into my life in the category of a tree. Some people are like leaves on a tree. When the wind blows, they're over there... wind blow that way they over here... they're unstable. When the seasons change they wither and die, they're gone. That's alright. Most people are like that, they're not there to do anything but take from the tree and give shade every now and then. That's all they can do. But don't get mad at people like that, that's who they are. That's all they were put on this earth to be. A leaf.

Some people are like a branch on that tree. You have to be careful with those branches too, cause they'll fool you. They'll make you think they're a good friend and they're real strong but the minute you step out there on them, they'll break and leave you high and dry.

But if you find 2 or 3 people in your life that's like the roots at the bottom of that tree you are blessed. Those are the kind of people that aren't going nowhere. They aren't worried about being seen, nobody has to know that they know you, they don't have to know what they're doing for you but if those roots weren't there, that tree couldn't live.

A tree could have a hundred million branches but it only takes a few roots down at the bottom to make sure that tree gets everything it needs. When you get some roots, hold on to them but the rest of it... just let it go. Let folks go."


I have had to let some people go. Doesn't mean I don't still love them and think about them all the time because I do. I also have some pretty large roots too so I consider myself one of the lucky ones.I guess it's the same with letting things go that were keeping me busy. We just get to a point that it's okay to sit back and soak it all in.

Life teaches you to say thank you. So thank you to my leaves, thank you to my branches, and thank you most of all to my roots!

Monday, July 28, 2014

Pulse ox is low, heart rate is high, this little mommy says sigh sigh sigh

Have you ever had those moments when taking care of your child that you knew something was wrong? A mommy intuition that something is just..........not...................right?  I just feel like there is something going on with Jude. It's one of those feelings I wish was wrong. When analyzing work and our current situation I know it would be best that Jude stays as healthy as possible until 2015! A strange assessment but the honest truth! Well I prefer he stays better forever.

When Charlotte got here today to care for Jude while I went to work I explained that Jude has been very happy, but a bit off. Throughout the night his pulse ox kept setting the alarms off. I was up and down repositioning him, lifting his arm, and calling his name. When his continious feed alarm sounded around 5am I was pretty much just beat and I think Jude was too. So we both drifted off for a good two hours worth of sleep with everything perfectly stable! Mike left for work and we both still slept comfortably.

Charlotte said that Jude's pulse ox dipped several times for her as well and he slept until almost 11am. Not like him. She also said he vomited today......ugh! Ironically I had placed a call to Jude's GI this morning explaining that Jude has gone three plus consecutive days without vomit and that we had learned we had to keep his night feed consecutive and not raise the feed more than 70ml. If we did raise it above 70ml he vomited everywhere. I thought we may have found the magic feed rates to keep him from getting ill.

Let's fast forward to tonight. I placed Jude in his bed......changed his poopie diaper which he thought was HILARIOUS! I kissed him over and over and told him goodnight. I gave him his medications and slowly crept out of the room. Mike and I were enjoying some TV when we thought we heard something so I paused the TV..........but we didn't hear anything. Finally Mike got up and we heard something else so Mike walked to Jude' room. Suddenly I heard Mike YELLING "come here......lights lights.......I bet he has aspirated!!" UGH! Jude had thrown up again. " He was choking" Mike yelled. Double UGH! His vital monitor was on and it dipped to the low 90's with a heart rate in the high 160's. I got him cleaned up and changed his shirt and slowly the vitals started balancing out to normal (whew). Did you know if someone aspirated you can (sometimes) tell within an hour.

I told Mike that I had informed the neurologis today that there may be some issues and that there office mentioned a possible virus. He said, "this isn't a virus this is the spinal fluid leak". We both know it, but there isn't much we can do but wait and see. Jude is always a wait and see. I did pick Jude up tonight off his back and placed him on a pillow so I could hold him, kiss him, and talk to him like I normally do. He smiled SO big, but maybe it was so much for his back. Maybe it's our want to be with him that inhibits his progress but we aren't putting him in his wheelchair and he does need tie to sit up.

I am hoping that Jude has a restful night and that he is actually getting better and that I am very wrong!


Saturday, July 26, 2014

Jude's update

Jude still has to lay mostly as flat as possible due to the spinal fluid leak. People keep saying they are seeing a change in the bump, but when I go to change his diaper.........it's the same. I have confidence it will heal on it's own but right now the swelling is still there.

Jude did well today, but he did present with a few things. His heart rate is running high to me at 146 or higher. His pulse ox is great at 100!!! However, his neck is very tight and toned. His axillary temp is 98.7 and he is presenting with new seizures. I don't like these seizures. He seems to be holding his breath and staring off for a long time and it's scaring me a bit. I am trying to envision Dr Riela's voice saying "eh it's just abnormal brain activity and if it gets out of control we have medication".

In regards to the nursing issue we learned it was the lack of Jude's seizures (because he is heavily medicated) and the lack of an overnight feeding (which he has back on) that caused the company to deny nursing hours. If it came down to it I am sure I could be Jude's personal care assistant, but would he be as well taken care of? I would like to think so but our nurses are well trained. I can point out issues and they will monitor Jude like a hawk and let me know and the mere suggestion there might be something forming. I truly believe that's why Jude is still with us and been able to overcome his illnesses. They can listen to lung sounds and here the very infiltration of aspiration. Wish us luck fighting to get the with us.

I hooked Jude's monitor up overnight so I could watch him. I am sure he will be great.


Thursday, July 24, 2014

Jude's bump and doctors update

Mike took Jude to his Pediatrician today and then to the neurologist for check ups. The Neuro said the cerebral spinal fluid leak isn't ideal, but it happens. They really believe Jude's body will heal the leak itself and agreed we should just watch him. That's good news and we will continue to monitor Jude and hope he doesn't need any further intervention on the matter. They also increased the Baclofen pump a tiny bit. They said they were very hesitant with how Jude has responded to go up any further, but they did want better tone than he has now.

To top off my month from Hades we received a letter stating they were decreasing Jude's nursing hours to 28 a week. This makes absolutely no sense and honestly seems like a failure on the deciding parties fault for not investigating Jude's case properly. They suggested a personal care attendant, but they cannot give breathing treatments, administer medications, handle controlled substances, and more. So I guess they think Jude can do it? So it will be a lengthy process but all of Jude's doctors are behind us and ready to step forward to get him what he needs. One even expressed her complete frustration with the system and the "lack of proper interest and care regarding children that truly need this service". We are very grateful for the care and services Jude receives. Without them we could not work and would be dependent. However, this just really came at a bad time.

So to move on to the next subject. Am I frustrated lately? YES! It's allowed. I also understand that everyone wants to help in some way, but that's difficult. I appreciate your kind words and your thoughts for Jude and the family. I learned a long time ago that it's okay to feel completely frustrated. I am tired because I don't sleep well. It's hard managing work and home. Dealing with insurance on Jude. Plus, honestly dealing with rude and obnoxious people that have absolutely no idea what's truly important in life just wears me straight the heck out. So would I like to run out into the street this week and yell my mother bloody head off? Yep! However, I have also learned that there isn't much you can do regarding those items you cannot control. So you just pick up the pieces, be thankful for what you have, and keep marching on. It's the way it works. So don't feel down if I seem upset or at my wits end. It's just one of those months.

Have a great day all.


Wednesday, July 23, 2014

The good and the bad

The bad news ..............it's spinal fluid. The good news is that they are comfortable letting him stay home for now to try to resolve this (yay). We got specific instructions.

1. Jude has to stay flat either on his side or his back, but flat.
2. Limit all activities
3. Any type of actual leaking from the site requires immediate transport.
4. a fever of 102 or higher requires us to take him in right away.
5. If the site gets larger we go in.

So we are all going to be very vigilant about this and hopefully get Jude healed at home. It's always a waiting game with him. I am very thankful they don't think this is a Baclofen leak!  Some prayers that we can get this handled without surgery or intervention would be wonderful.

Jude is going to see the neurologist tomorrow and he will double check the site to make sure he doesn't think it warrants anything else. He then has another follow up with the actual surgeon on the 15th.

UGGHHHHHHHHHHHHHHH

Well I am currently sitting in my office crying. It seems the golfball lump on Jude's back may be something serious. I was really hoping it wasn't. Maybe just a collection of fluid? I am still holding out hope.

The neurosurgeon is waiting on the pictures I took to come via email and then they are going to make a decision. They currently have Jude flat on his back at the house.

The nurse/doctor know I am frustrated and I can hear in their voices how concerned they are about us and Jude. They believe it's probably one of two things. Either a cerebral spinal fluid leak which will require a blood patch or the Baclofen is leaking and collecting in the spine. The later part is what sent me a bit over the edge.

I don't want Jude to go back through another surgery. I don't want to lose my job. I think we need some prayers that this is a Seroma. I am not sure how far after surgery those can form. We are 22 days post op now so the nurse sounded a little doubtful it was from the surgery itself.

Hoping and praying he calls back that this is not an issue. I will keep everyone updated.

Again...........I am thinking positive.........just fluid. Just fluid!