In the E.R. again!

coming to a Y in the road of life

It's a scary, uncomfortable place to be....that Y in the road.

I guess it all comes down to God giving us free will....we make choices in life....
if only God gave us a navigation system that he programed and handed to us... we could follow without question....without hesitation....oh how that would make life so much easier....
but life doesn't work so simply... and it wasn't promised to be easy...and in the end, I am certain that the navigation system of life will one day lead me to our Heavenly Father's Kingdom where there is no heart ache and suffering...
and I just keep reminding myself that this life is all about deepening my relationship with Jesus no matter
what I am faced with....I will go through yet another trial if it brings me closer to Him.



I know God is present...
I am trying to stay very still and quiet....
because I am struggling
I am waiting for God to lead me down the path I should take....

Prayers are greatly appreciated....God knows what you don't.



(For Locals....http://www.marshillchurch.org/easter)

The clouds that follow...

I am the kind of person that looks for the good in all situations...I look for a reason to smile, to laugh, to try and enjoy the moment....if I can't muster it up I try and find the lesson to be learned in any difficult situation I am faced with. That is not always easy. This month has been pretty difficult....in just about every area of my life.
I am definitely not being delivered from any of the hardships I have been facing....really to numerous to mention.
If I could sum up what's been going on the last few weeks with key words it would look like this....

hospitalization

vomit

seizures

major car problems

major car repairs

broke down

panic

money

disappointment

exhaustion

wrestless

sleepless

frustrated

alone

attacked

tears

weary

ok...enough...I could go on and on .....
my time and energy has been going to all the negative happenings in my life...
I am sick and tired and am in desperate need of a break.

There are little angels in my life whom I run to.....

I am so grateful to the friends I have who know me...really know me...and all my garbage, and yet love me unconditionally. I am so grateful to my mom who is always the 3rd and 4th pair of hands I seem to always need...with the kids, meals, a shoulder, letting me get some therapy time at the gym....alone!
I am grateful to all of those who pray for me and my children and especially Hudson....lately it just seems to be falling on deaf ears, but I continue to press on, press into Him, in spite of the enemies attacks.


On March 20th, Hailey Dee, my baby girl, turned a whopping 7!
I poured my heart into giving her the exact party she wanted, and I had a very happy girl!
Here are some of the highlights from her party....a bowling/sleepover party!

my dear son...

I have two dear, sweet boys...they both amaze me in such different ways...


(this post will be brief....AI (american idol) is calling my name!)


I have had so much going on since we have been hospitalized...I missed work, my kids got behind in some of their work, Hudson has been vomiting daily since we have been home which has me on pins and needles, I'm tired, my patience is thin, and on top of it all... B.H. (before hospitalization), a trip was planned with my brother to go away this week to Sun River in Bend Oregon. I have had to make all kinds of arrangements, deal with therapists, cancel birthday parties, I have to go to Children's the day of for GI and labs, etc, etc.


Bottom line...I am stressed....to the max...


and tonight, my darling Hunter comes up to me as I am on the phone with my brother and says...


"Mom, when you get off the phone can I ask you something? It is special."


I worded o.k. as I was on the phone. When I hung up he came up to me and said...


"Mom, are you stressed? Are  you tired?" (I answered a hell ya to both....not really lol) I said "yes"


Hunter replied "Mom, can we pray...can I pray for you right now?"


I was cleaning the kitchen up from dinner....In that moment, I just stopped, and we stood in the middle of the kitchen and my 9 year old son stood in front of me, eyes shut tightly, hands folded, and he prayed for me.


It was just one of those endearing moments....and it made me stop....in the midst of the stress and chaos....it made me realize my son is paying attention, BUT  at the same time he knows where to go and whom to turn to, for comfort and peace.


It was one of "those moments."

the fine details...

I apologize giving only snippets of info.
I was texting to my blog which gives me a very small field, so I had to be direct and make my point.


Monday I decided I really wanted Hudson's levels to be drawn. Not just for meds, but metabolic as well.
The weekend was difficult for Hudson and he seemed "off" to me. When I got the email confirming the orders were put in for labs I made my way to Seattle. As I got off I-5, near the University of Washington, Hudson had a really bad tonic spasm. He got very foamy and was drooling at the mouth, and he started choking. I was grateful to be off the main highway, so I was able to pull over, jump out of my car and help him. I thought for sure he was going to vomit, his tummy was heaving but only saliva and mucous came up. I got back in the car, called the mito nurse and she agreed with me that I should take him to the E.R. 
That's how we got their. We were in their for over 5 hours! I hate the E.R......simply for that reason....and then all the formalities.... I have done it so many times and it becomes old and annoying real fast! There is no getting out of it though...and I always do it with a smile....even though I am probably rolling my eyes as I go through the process.
Once we were admitted a few of his metabolic labs were a little off. He got an i.v. of carnitine and glucose.
The first night he vomited all his meds...twice. We broke our streak of no vomiting since June of last year :(
His stool sample came back negative for Rotovirus, and his nasal swab also came back negative.
So he basically was treated for increase in seizure and his metabolic disorder. It was the longest 4 days ever! I had absolutely nothing. My eyes were frighteningly red and blood shot. I had no case for contacts or glasses, clothes, toiletries...NOTHING! I felt inhuman by Thursday. But I would have stayed a month like that if I had to....if that's what Hudson needed. I was there for him not me....I was there for his survival not mine!
By Thursday I really felt there was not much more they could do for him. It was a case of managing seizures and I do that on a daily basis. He did have one very strange seizure that no one witnessed but me. I pressed the call nurse button but she came waaaaaay to late. Hudson had a typical tonic spasm. Since Monday he has been getting the dry heaves after some of his tonics. I thought he was going to throw up so I layed him on his side. He seemed to get through it, so I just left him to rest on his side. All of the sudden his top leg stiffened out and he started screaming. No tears, just screams. I rolled him to his back and both legs were stretched out and stiff, and he continued to scream...eyes were open. It was bizarre and something I have never seen. It last a few minutes. Thankfully it never happened again, but all the nuero's said it sounded like it was a seizure.
With that happening, I was told Diastat should be on hand, which we have never had or used. 
His Depakote levels came back on the lower end, so they ended up giving him to 2 bolus intravenously and it seemed to help in frequency of tonic spasms.


I did get a visit from Dr. Saneto, and I got to pick his brain (that will be a whole other post!) I also got visited twice from Pam (mito nurse) and we talked on the phone several times. Anything that was done from a Nero standpoint was always passed through Dr. Saneto first. I love Hudson's team of doctors, I love how they all work together, its very comforting.


So we are home....after a ridiculous discharge. I was suppose to be out at the latest 2:30 p.m. Those were the nurses words....we didn't get out til close to 5:30! I didn't leave with the Diastat because the order was never put in. The nurse was horrible, but because I have hard time not being nice I smiled the entire time and told her it was fine when she kept apologizing over and over again. She even called me on my way home apologizing for the whole nightmare discharge. I can't be unkind or harsh, I don't have it in me, and I know she sincerely felt bad, I was at my max frustration level though.


So, the big question....How is Hudson doing? 
I would say he is closer to baseline....having about 8 tonics a day. He is still dry heaving and seems like he easily will throw up after many of them...I don't know what is causing that change...It is not something I ever want to revisit....the last 8 months of no vomiting has been so nice....one less worry and one less mess to clean. I need prayers he didn't catch anything while we resided their. There is so much crud going around, I need him to stay virus free!
We will spend the weekend catching up on sleep, and getting this neglected house in order.
I am so, so happy to be home with all 3 of my kiddos!

Thanks so much for all the prayers and comments left and emails sent. It gets me through some of the darkest, loneliest times, and I read every one of them. 
I love all of you and can't wait to catch up this weekend reading about your families and how your little ones are doing.

The longest/worst discharge in our hospital stay history...BUT....we are finally on our way home!!!!

We are still hospitalized. Hudson threw up 2x last night, seizures off the charts..my other 2 H's have stomach bug so it is suspected Hudson does too..thx 4pryr