Googling ghosts

Well I did something totally stupid today. I let myself google.....I know better!
In all this I have had a firm grasp on my faith that we will kick this thing's arse...whatever it is. But then I got bored. The internet is a curse and should be shut off when you have people sick around you. Please quote me on this.

If anyone ever thinks they should do this....let me help you. No. No. Heck no. I spent the afternoon in a fine state of freaked out. I had a "chance" encounter with a wonderful man from church in the store after work and he reminded me, with a smile on his face that God has big plans for my boy. It was exactly what I needed to hear. God has a funny way of making these chance things happen. Love Him for that.

The boy was home in History homework mode most of the night. He is run down this week. I don't know if it is medication, sickness or the fact that he is a teenage boy. :) He was to start a new med this week....but I still can't get the pharmacy to send it to us. VERY frustrating.  I've been arguing with them for weeks. Each time....it will be there overnight. And it doesn't get here. They won't let me pick it up locally because of some insurance thing.....

For Halloween I was BatGirl. Yes I dressed up, I wore a T-shirt and my martial arts belt ;) easy peasy! Halloween means alot more around here. It marks the wedding anniversary of two of my favorite people and their daughter's birthday. I was blessed to be the best man in their wedding. Yes....that is what I said! 

This is also my stepdad's birthday. He passed away three years ago after being my champion through some rough times. I have thought of him often in this past month. I know he is watching and protecting.

And now about the medical stuff

 

So where are we now?

…..we still have no answers. He is taking multiple medications (4 kinds….7 pills) a day to fight diseases that he might not have. To answer your question before you ask it, no we have no diagnosis. Yes he is being treated. The doctors feel the risk to his body is greater to let this linger than to take meds he may not need. I get asked that one a lot. :)
One more Med is on the horizon...I have had quite a fight to get that one. I can just go here in town and get it. The insurance company won't allow me the cross the "rivah" and pick it up. It must be mail ordered to us. And THAT has been hours of my life I will never get back.

We have travelled near and far to visit the best doctors money can buy…..but no tests are giving us clear cut answers. One day he is positive for one disease, the next he isn’t. But then he is positive for another. It is enough to make ya crazy! It is stressful. It is tiring. It involves a tear or 50. But still he fights on. Last week he had an ultrasound, a complete work up at an ophthalmologist (I can know tell you how they are different than optometrists) and then the liver dude appointment.

The liver dude is the local pediatric gastroenterologist…who knows a lot about the liver. I met him in the PICU, I had no idea who this guy was talking to me at first and then when it clicked… I proclaimed OH you are the liver dude! Lack of sleep. But he shrugged and it stuck. :) No stuffy doctor so and so…. Just the liver dude.

Last week’s menu contained looking over the notes and results from testing done at UVA, scratching our heads, saying ummmmm a lot. Liver dude decided to send us over once again for more blood work. Not the boy’s favorite thing at all. Might rank up there with all time things he hates. It causes a severe anxiety reaction every time.  BUT….it is becoming a new normal for him. One that I will have to help him adapt to in whatever way I can. I offered to sing, dance and tell bad jokes to distract him from the darn needles. I have joked that they had to do all those blood transfusions because they knew that he was going to have so much blood drawn. Anywho…. One of those tests was a genetic test for Wilson’s disease. Wilson may be the cause of all of this, and the genetic test with confirm or rule it out definitively. We get those answers… in a month. Great. *^(%***&% more waiting!

But what about school...

Since our escape from the PICU on Sept 24th we have been busy, busy people. I won’t bore you with a day by day account…. But trust me I can tell you if you really want to know!

 

Two days after…..the boy and I went to visit his friends at band practice. This was a beautiful thing. We walk into the school and theater kids, in their normal demure way, start yelling He is ALIVE! And heralding it down the performing arts hallway as we walked, they did what any teenage kid would do... they made a parade! Kids clapped him on the back, hugged him and were genuinely glad to see him. One friend clung to his side and wouldn’t let go, then came to me and asked, “really…..how is he?” It was one of the most touching moments to see and feel the love these silly teenagers have for each other. Underneath the drama, the attitudes and the rebelliousness….good hearts.

 

Remember I said we were visiting? Yeah… well that didn’t last. The boy decides to go check his band locker…..and comes back out with his horn in his hand. The director looks at me and just smiles and laughs. Next thing you know he is standing out there playing. Not up to his usual standards, but playing all the same. One week later he is at the football game in the stands, with his horn. Just wanted to have it with him…..and the next thing I know he is playing. High notes. Loudly and with great abandon. Last weekend he was on the field helping his band achieve top marks in their state wide assessments. Music was, is and always will be a driving passion for him.

 

The boy worked his tail off to get caught up in school. He was out for a month and then started back part time to get back into the swing of it all. A day in high school can wear ya out!  He is in some crazy classes (read as:stupid scary smart)and it took a lot of hard work on his part to not fall behind. Even if he had been in school it would have probably taken a lot of hard work with the class load he has! I cant be of much help with something like Forensic Chemistry or Statistics.
When you are out of school for medical reasons the public schools have to help provide you with resources and teachers…. Unfortunately what sounds easy enough was a nightmare to deal with. I spent countless hours on the phone and he basically taught himself. Nothing against the program or the teachers…. They were not equipped. They handle inside the box kids and the boy bounces all over the outside of that box. At one point I was told they just couldn’t find him teachers. I am proud to say that he has ended the first nine weeks of school, of which he missed half, with high marks in all his classes.

PICU....part 3, the final hours

On Monday in the PICU we really got the ball rolling! The boy had been labeled as a fall risk days before they let him stand because he was suppose to not be able to walk on his own.

In the wee hours of that morning he called the nurse’s so he could get up and visit the facilities in our presidential suite….the army showed up. One person to hold his arm. One to stand behind him. One to move the IV poles. And a fourth to guide the tubes and wires. It was excitingly comical. He pretty much stood up wobbled once and went walking on his own. They learned after that….. no army needed. And soon realized all those tubes weren't really needed anymore either.

The rumor swirled that we were going to be able to head home soon. How cool was that?! One week from the start and we were already getting to go home soon. In the storm of things i was told in those first few days, going home soon was not one of them.... The boy was overcoming obstacle after obstacle. Dear sweet me….I didn't catch that soon meant TOMORROW. I blame the lack of sleep for this too. I am going to use the excuse until I can successfully pass off as senile.

Tuesday 7 AM. The grandma and the boy are up and ready to go! Waiting ever so impatiently to get the all clear. The grandma would walk to the door, lift the screen and peer down the hallway...then pace back and sit down. The boy just wanted real food. He listed all the places and things he wanted to eat. There was the flipping through TV stations, walks and marches around the nurses station, sitting and then sitting some more. 
After eight days, eight doctors and eight hours of waiting…. We were home in time for dinner!

The boy was put through more tests in those 7 days then I think I could even remember. Between the transfusions, plasma, blood work, biopsies and x-rays he kept right on going and proving them all wrong. He was not going to be in that hospital. He will not have to go through all the therapies that they originally prescribed. He will adapt and overcome. He came to grips with the severity of what happened pretty quickly. I let him ask questions and didn't overload him with the gory details. He said he was sorry...i don't know why. He says he didn't mean to scare me or worry me. I told him it was all in the job description. Within a  few days after his release from the hospital he was fully aware of the miracle that he is.  He understands that he has a very real disease that can never be cured. But what that is…..what we still don’t know.

PICU.... part 2 the boy awake

The next few hours the boy drifted in and out. He did no damage with his self extubation....this is a surprise, I'm told he could have messed up a few things.  We spent time waking him up every so often, they had to cut off all the sleepy meds before planned since he went all Hulk on us.
And then there was the  fighting with his high flow breathing thing. A thing that looks like Bane in Batman. Go ahead and look up a picture I will wait. .....

He hated that mask, this was one of the hardest times for me. Fighting him to keep it on, holding his hands and wiping his tears. Telling  him that yes he can do this. Can't is no longer a part of our vocabulary.  I had to pull every trick I knew out of the books to keep him positive, not to mention to keep me fighting for us both.
The entire time the doctor was just steps away wanting to put that dang tube back in him. After what seemed like forever the respiratory therapist agreed to take this monster off of him. BUT dear boy, it is hanging right here ....and those tubes are here too.
The boy turns to me and says with such conviction, "They are not putting the stupid tube back in me." Then my boy, prove to them you don't need it. And he did.

He did every breathing exercise they threw at him. And some of his own. Band for the win! He had to explain to the medical staff what he was up to. A wonderful discussion about asthma patients and brass instruments was had.

Saturday we celebrated by watching Marshall University play ball on the grandma's iPad. We quietly cheered so as not to bother the other patients....but for a minute there, just one minute, it was easy to forget where we were. The boy slept through half the game. Which was OK.....when he woke up he was back. Fully there again. I missed him so much.

He was doing so well that night the doctor let him have a drink! A real life drink! He had hot tea.
You see, on our first night there he struck up a conversation with the nurse about tea. Who knows why, but he did. They compared their favorites and she promised him some of hers. When she had her next shift she brought me some tea bags for when he woke up and they allowed it. So hot tea my boy had. It was the best tea ever he told us.

Saturday night. I was less than ladylike at about 3 am. I am humbled by my grizzly momma bear side. Sometimes, I can only blame my bull headed lack of sleep. Or that is the excuse I'm sticking to.
I demanded to see the doctor. I may have said a few less than polite things. But all my boy wanted was to rest, and all i wanted was some answers. Somewhere in my temper tantrum the doctor decided he was safe to be moved away from their watchful eye (right beside the station) to the quiet, dark back corner. While he was being moved she talked to me and told me what I needed. So see?? Sometimes flying off the handle helps! The boy got upgraded to the presidential suite of the PICU. Large room, beautiful view and a private bathroom. And quiet. Did I mention it was quiet?

Sunday a new doctor came around. A pediatrician from DC. We love him. He let the boy eat. He let the boy walk! He stopped us on one of our laps around the nurses station and said....what are you doing why are you still here??

The one where I talk about the PICU....part 1

Working our way up to September 17th.....

Tuesday morning my boy's chest x-ray looks rough. I don't quite know what I am looking at but even I can tell something isn't right in there.
The doctor and nurse practitioner pull me aside to talk to me about intubation.... if you aren't sure what the means let me save you the Google search. They put a tube in your mouth and down your throat that breaths for your body. SCARY. Breakdown number 43 for momma bear. They tell me they will give him meds to make him sleep, meds to relax his body and calm his mind. All I can hear is.... he won't be breathing anymore on his own. Really what more do you need to hear? I agree that if this will get him better... then do it. BUT, and this is a big one, they must talk to the boy first. They must explain to him what they are doing and why. After I snot all over myself and pretend three or four times to pull myself together.... back in his itty bitty room I go. Chin up and all that jazz.

Boy.... I know you are scared and tired. Your lungs are tired too. The doctors want to give you some medicines to help you sleep and help you breath. I will be right here and the doctors will explain it all to you. I think we need to do this, but you decide. In walk the medical team. The beautiful medical team surrounded his bed while I held his hand. They showed him each medicine, named it and explained what it does and WHY he needs it. He listened intently turning the viles over and over in his hands....so if I let you do this, when I wake up I can go home? "As soon as possible. This will allow your body to heal quicker" The boy lays back and says, wake me up when I can go home. Within just a few minutes he is asleep and I'm whisked away so they can do their medical magic.
I had a lunch date in the cafeteria with one of my dear friends. The grandma got in from the sunshine state.....but things had changed. Last she knew her boy was talking and on oxygen.... now he was in a medical coma.  It was hours before I could see my boy again. And I wasn't ready for what I saw.....that itty bitty room was so much smaller. So many machines.

That night I was under doctor's orders myself. They allowed the grandma and I to take one of the Ronald McDonald rooms in the hospital to rest. I was told he was safe and OK, I needed to rest. He needed me to rest. I slept 6 hours that night. Six long glorious hours...in a bed! It wasn't my bed but there was room to roll over, and that my friends is a first world problem I am so glad I have.

For three days my boy slept and healed. His lungs started to look a little better. His liver, kidneys and spleen were healing. Oh yeah, I forgot... those were a mess as well. But the lungs not working trumped everything else. The doctor decided it was time to start weening him off the meds one by one so he could wake up.
Teenagers are a dramatic mess. Girls, God help us all.... I can't imagine and I'm thankful for my boy. My boy is an old soul, he is a quiet introvert. He is weird. And I love every weird little cell of him. I don't see what is so weird about him... but I'm weird too. I tell you all that to tell you... I could not WAIT for him to wake up and tell me to stop when I got a little too excitable and weird. The grandma just wanted to see him roll his eyes. Little by little my boy started to respond by squeezing your hand, shaking his head and then the eyes. Those grey- blue eyes opened, just a little bit and just for a second. But there they were. Breakdown number gazillion for me.

Thursday night/ Friday morning I leave the boy's room to go take a middle of the night shower and breath a bit. I say.... no wild parties and behave yourself. He so didn't listen! An hour later my phone rings, the boy is asking for you. He.......pulled out his tubes. ^$$$%#$^%% WHAT?!?!?!?! Off I run.
"Hey." He said hey when I walked in the room. Like this was just any other day. I can't help but laugh, didn't I say behave? "I pulled out the tubes, guess I was done with them."

Where do we begin?

I wanted to start this blog to let go of some of my thoughts, and to inform the loving people in our lives of what is going on. I tend to be a wordy person.....so I need the space to let me thoughts go :)

Let us go back in time just a tad shall we?
Everyone to your DeLorean or TARDIS.....or time machine of choice. ;)

September 15 2013 the boy doesn't feel just right. In his eloquent words... he feels blah. So a day of chilling and relaxing is on order.

September 16th....a rough night of sleep for us both. The boy just couldn't rest. He had developed a deep dark cough. Momma bear kicks in and after a nice calm nap that morning on the sofa we are off to get some answers. Off to Patient First....what couldn't be more than five minutes later.... they are waiting for the rescue squad. I hadn't even got to pay the people before they were sending the boy off to the ER. We were both very confused as to why a cough would cause such chaos.
11:00 AM in the ER and the boy is off to get a chest xray and a cat scan. We know now that his oxygen levels are low. The ER doctor starts to mention tumors and cancer...not words anyone ever wants to hear. EVER.  I'm told they have contacted the critical care ambulance unit and we are being sent to the PICU. No one knows enough about what is wrong to be able to give me any wise words, just that it isn't good.
The EMT pulls me aside and tells me to not wig out.... the boy is starting to wig out and right now I need to be strong for him. I can wig out when he can't see me. That's right... business hat. Chin up, tatas out... we got this. I can do that, I've done it before. The boy asks me to text his band director.... he might not make it to practice. Priorities my boy....you have them!
4:30ish  we roll into the St Mary's ER parking lot to see the boy's youth leaders waiting. What beautiful people God has given us. Through the course of that evening my people, our people, fill the waiting room with bodies and laughter. These beautiful people may never know what that meant to me. What I needed right then and there was to know I was not alone. I was not a single mom with my boy... I was part of a big family with OUR boy.
That night I slept in my new orthopedic comfortable bed, one that I will call home for the next several days.