Summertime blues

I never thought blogging would be hard. I just thought I'd type up my views on a few things and hit publish.
And then I had a cause. I had a reason to blog. And I find it extremely difficult at times to not verbally vomit. I have stayed away from anything just in hopes of getting the emotions in check. And now I've decided oh well!
The summer has brought many changes for the boy and his liver. Numbers have started to climb up. Biopsy has shown not so good news about damage levels. His spleen has grown. We are back on the roller coaster of going to doctors a lot. He is back on medications in high dosages and giving lots of blood. We HOPE to get some answers and find the magic cocktail to get things under control. My emotions... have flown south for the summer.

We traveled to UVA last month a few times. Once for fun - the boy went to a four day leadership in music camp and had a blast! And once to visit the expert on his innards.

The innard doctor says this is AIH. He said this is containable - the damage to the liver has reached irreversible yet. But he wants all sort of blood and pathology and endoscopy and more and more. He asked the boy if he was on the football or soccer team. The boy looks at him and says " umm no" Innard doctor says - do you play sports? The boy " Do you consider marching band a sport?" Innards: Yes I consider that a highly active extracurricular activity and I'm glad you have it, it is good for you. But no team or contact sports. Second restriction is, happily, something that doesn't much affect the boy.

The scary part came when the innard guy says I want you to meet the transplant team. WHA?!?!!??!?! You just said damage can repair.. and now transplant??? He feels it is better to have that meeting under calm circumstances instead of by emergency. Not that there is a need now - but he says WHEN it is needed. Gut punch. I ask the boy what he thinks of all this. He says "It is what it is. It sucks, but it is my life so I have to deal with it. Complaining won't help."

It may not help....but I'm still gonna do it boy. I'm glad one of us can be the adult.

Imuran and why it sucks

Things have been relatively quiet on the home front these past few months.

So what has been going on? End of junior year is fast approaching. The boy has been so busy with exams, concerts, concerts and exams some days it seems like we never even see each other. The house is a wreck, the dog slightly lonely. But, he wouldn't change it for the world. And I am just so thankful that he gets to be this busy.

We won't have any major health updates until the end of June. The liver dude has ordered more bloodwork at that point. He is so sure that the boy has this thing beat, he didn't feel like he needed to keep up the monthly sticks by the vampires. Right now it is suppose to be resting time for his liver to heal. But, see above about those concerts and exams.
He is feeling fine in the liver department, although he is sick with a cold or something like that. I'm waffling on the edge of watchful eyes and taking him to the doctor. There is no fever, and that is the turning point. Fever = ER. With a compromised immune system anything can be a problem so we are prepared with all the fun things you have to do to stay healthy. You know that stuff your momma taught you when you were younger. The liver dude even wanted him to carry Lysol wipes around in school for the desks, that was where the boy said no. He didn't want to be THAT kid. He will wash his hands, use hand sanitizer, and stay away from sickies, but wiping down each desk in school is just too much. I don't blame him.

To keep his immune system on a leash he takes 150 mg of Imuran (azathioprine) a day. Imuran basically suppresses your immune system by keeping it from producing the stuff that a "regular" person needs to fight off disease. So a cold, flu, etc is a big deal. He can be sick for longer than you and I because of these minor things. He can end up hospitalized. We can't self medicate with over the counter drugs.... look at the labels. Many of them mention liver issues as a reason not to take them. So when the boy gets a cold, it is troublesome. It freaks me the heck out, I'm not gonna lie. He coughed this weekend....and I drove him  (and me) nuts. I can't help it. Last time he had that rattling cough.... we went to the PICU. Call it PTSD, over protective, being a mom.



From the great Pappa Wikipedia....
Azathioprine is used alone or in combination with other immunosuppressive therapy to prevent rejection following organ transplantation, and to treat an array of autoimmune diseases...

I won't list the adverse effects, reading them makes my blood pressure go up. But you can read for yourself here. http://en.wikipedia.org/wiki/Azathioprine

a little lesson on breathing

And this is why i didn't set a once a week or once a month idea for posting.... It is a deadline. Deadlines in my life are not good for me. I deal with strict rules and deadlines at work... in my real life I need some freedom. So... that coupled with amazing health from the boy means I'm a slacker of massive proportions with a blog. But quickly, he is rocking this living life thing. School exams, concerts, sleeping, breathing....he is mastering them all. 


Today I have been thinking a lot of self reliance. My boy is a self reliant, independent young man. He came out of the womb that way in a lot of ways. I'm realizing more and more... he gets that from his mother. BLASTED CHILD! Some of the things that tend to irk me... I gave him! 

Because of this independence I now can see the signs that were overlooked before the "incident" those things the doctors asked in the ER that made me feel like the worst mom of the millennium.

If you feel you may be experiencing low oxygen levels be sure to ask your doctor to check your pulse oximetry reading.

Symptoms are:

•  shortness of breath/ difficulty breathing/ dyspnea

•  extreme fatigue

•  chest tightness

•  mental confusion

•  tingling fingers

•  water retention (especially feet/ ankles)

•  chronic cough

The stuff I've underlined were there at least a month before his hospital vacation. And yes, we did go to the doctor. Several times. When he was loaded into the ambulance his pulse ox was something near 50. That is HALF of normal, meaning his organs were only working on half of what they needed to survive. That is why he went downhill so fast. 


But I didn't know what I needed to know- so I didn't ask questions that I should have maybe asked. How are we as parents suppose to know everything? We can fake it... and some of us pretty well. But BS and Google can only get us so far!

My perfectly healthy teenager had no reason for me to not believe the doctor's diagnosis. He was tired, because he is a teenager and needed more sleep. He was confused in that way only a teenage boy can be. The swelling was attributed to injury, not water retention. And the fingers.... well he held on to this little ditty of info until we went out to a local university for testing a month after his hospital visit. Only then did I learn that his hands tremor, and can go numb. Again y'all, mother of the year am I! No really, the liver dude told me early on not to beat myself up and not to get mad at the doctors. Again, we didn't know what we didn't know. There was no history to tell us that he had an issue until that day. 

You never know where your endpoint is. We are blessed with whatever time we have here on Earth. Blessed to wander and wonder about what this life is for. Think about why we are here, do for others and be love and light. My boy and I have a new leash on this. For me it has driven me into action to create the life I want. For him, it has given him the will and strength to stand up and say, just watch me. He has learned to speak out for himself, yes even against his mother's wishes sometimes. However, he does it with respect and to try and share the view from his corner of the world. 

Off topic, maybe I'm ranting

I need to go off topic here. 

And I'm going to pull off my soapbox ....so bear with me. 

I did some reading today about the life of a single parent and the effect it has on children. Once i started I couldn't stop clicking links and reading more. And I don't know if I'm getting it alright or getting it all wrong but my life is not reflect a majority of what I've been reading. Actually, what I read made me mad. To spread such negativity out into the world. Come on people! First off, I am not damaged goods who disobeyed God by having a divorce in my past. I should not be shunned for that, and God help you if I ever hear that you shunned the boy. I don't care how old he is. I dealt with some stupid parents, I (proudly) didn't slap them silly over it either. But I did decide I didn't need them in my life. My being a single mom is a fact. I can't go back and make the divorce not happen, I would NEVER want that.

The boy and I have been on our own since he was 10 years old and I'm better for that and I think he's better for that. We aren't free of all conflict and issues, but we are pretty darn happy. I lost everything when it comes to financial and material wealth and had to start over from scratch. When we had to move, people were there to support us. Friends, family, neighbors coworkers. They helped find a new home, move the few belongings I got and helped us get stable. 

By the way, the new house is definitely a God thing. The story of that itself I will have to tell you someday.

By reading all the statistics sounds like my son should be bad in school, bad socially, doing horribly at one thing or another and having sex like a monkey. So I don't know if its him or me or both but the fact that he's almost a straight A student in well advanced (nerdalicious)college level courses and doing well socially (even though he is still an introvert) someone somewhere is defying the odds. 

I don't think a divorce, or a choice to be a single parent means a bad kid. OR a bunch of negative hangups. I think we have a choice. You can pick which fork you want in that road. You can be out of control and have an "excuse" or you can overcome hardships and move forward. You cannot blame your child's grades on his or her absent parent. The grades are bad because the kid is slacking or there is a bigger issue. Period End of. 

Can I say that the divorce left some scars on myself and the boy? Heck yeah. Each break up is personal and different, mine was a freakin' train wreck. Big nasty ugly scars that can be covered up and will fade but they will never truly heal were left on both of us.. 

Just like this new chapter of living with a chronic illness, there are big giant Bigfoot stomps left on your heart and soul. But you gently fill those in and move forward. If you don't, they just stay there, bruised, sore and ugly. It isn't an overnight thing. I didn't wake up one day with the weight of the world off my shoulders after the diagnosis. But, I can have faith that my boy is fine. He is LIVING and loving it. And I can know that he is taking this 1000% serious and doing what the liver dude says. We haven't talked about the scars, besides the physical, that he has since the first few weeks. But he seems to take it as a fact of life, just like his blonde hair and double jointed shoulders. 

I never knew this was such an odd idea...just dealing with your schmutz and growing out of it. However, if the general population of media (yeah I know that is giving them way too much credit) is to be believed (HA!) then me and my boy rock. 

You were warned... soapbox put back away. 

Half a year

Six months ago today the doctor called me out of my son's PICU room to discuss his breathing. The x-ray of his chest was getting worse. It wasn't pneumonia...but they didn't know what it was.
I could either willingly have them sedate him into a medical coma and intubate him or wait and they may have to do it as an emergency procedure. Ever had to make a decision like that before??? Willingly, they could take their time, get things just right and keep him safe and comfortable. If I waited, he might crash and they would have to rush to keep him alive. Never again do I want to make a decision like that. Really there wasn't a decision, of course I wanted safe but no one wants their child (or anyone) in that state of there but not really there. No one wants to talk to someone who just can't talk back.

Last week we had a six month follow up to get the blood test results from last month. Everything is normal. Let me say that again. EVERYTHING. IS. NORMAL.
His angry liver has calmed down. His metabolism is good. His blood oxygen is steady between 98 to 99 percent. Six months ago he was under 50% oxygen, at that level, if held for too long, brain damage can occur. So the rush and the fuss we felt that first 24 hours at the hospital makes sense now.  Medical miracle that he is just keeps going. My boy makes me proud, not for his wit or his smarts, not for being so cute or talented. He makes me proud for breathing and not giving up. This summer the boy has lots of blood work and a biopsy to see how pretty his liver is. He and the liver dude agree that it will be perfect, like this never happened.

I am trying to let myself get back to normal. I try really hard not to smother the boy, he is 17 after all. And I know these months have been hard on him from that perspective too. I have been in a WAY too protective mode. But I have been scared to Hades and back! I have repeatedly told him, please give me grace in this, know that I am a wreck of worry for you. And he has been understanding to a point. When he coughs and I come out of my skin.... he gets a little peeved. When he coughs again and I'm yelling, "What's WRONG!?!?!?!?!" He answers with nothing. But Lord help me if there is a third cough. I'd be on my way to the hospital like Superman out to save the day.

So where are we now?   Exhausted from running around. I can barely keep up with his schedule. He is running from performance, to school, to rehearsal and back again. And he told me last week, that this might be exhausting and crazy but he wouldn't change it for the world.

Rare Disease Day - February 28

I had all intentions of posting a grand, deep post about rare diseases and the effect they have had on my family. And then I got taken out by a common cold and missed the day. Oops. 

A common cold that the boy gave me. The boy had it for a few days, sneezing, sniffling but he pushed forward. Weakened immune system and all. A common cold in me...I"m a mess! I must be getting old. 
I hope you will think of those around you that may be living with a rare disease. I'm sure they are there. They are used to hearing, but you don't look sick. 

Not too long ago I apologized to the boy. He was confused. I was honest. You see he is a teenager. And he is a boy. So for close to a year he has been driving me a little insane. He has been a “lazy teenager” which isn’t something I am used to at all. He has been depressive. Not just him normal introverted self, but extra MEH. In my learning I have found that everything he was, everything that I lectured him on, was all leading to this diagnosis.

And for that I was truly sorry. I lost a few Mom points when I figured that one out. I felt horrible. And so, I apologized. Just as he had said he was sorry while we were in the PICU. Just as he was worried about friends being scared to see him. I was sorry I didn’t maintain myself better. I was worried that maybe I could have kept him out of the hospital… if only. If only….

The liver dude said it best, what happened happened. No one did anything wrong. You just had NO IDEA what you were up against. No one would think a perfectly healthy teenager would have an underlying illness causes these “symptoms”. No one had a common thread to understand there was a dark sinister monster hiding under the bed. Because, he doesn't look sick.

But now we know. And knowing is half of the battle.

Let Go of the Worry, Not the Story

A good friend said this to me the other night while we were catching up. I was telling her that I was ready to move on and forget that all this had ever happened. You see the last blood work numbers were stellar! Got the call a few days ago. All the Angry Liver Things have fallen into normal range.

In that conversation, she corrected me, there has been too much of a story to ever forget about it. Too much GOOD has come from this stint in the hospital and illness. A renewing of faith, a growth in the boy and me.

It reminds me of an old neighbor that I had, she survived two bouts with cancer and even had a breast removed...but didn’t tell people. I just don’t get that. She didn’t share anything and only accepted minimal help from those around her. She bottled up and just forgot that anything ever happened.

The story is what we learn from. The story makes us grow. It removes us from our comfort zone and into the realm of the unknown, which is where the most fun (and pain) comes from.

I am a bit (a lot) of an open book. I warn people and apologize for that, but sharing is what helps connect us silly humans. The boy isn’t nearly as open as me, and yet he lets that door be open just a bit more now than he ever has.

He has been brutally, jokingly honest about his sickness and hospital stay. In fact just last week he played the sick kid card! A fellow musician at school was bemoaning the loss of a solo and complaining about it not being fair. Discussions ensue amongst those in the room about auditions and how he could have tried for it, etc etc. Having enough of the excuses the boy says, If I can show up for an audition AND make it after just getting out the ICU then you have no room to talk. AND BAM. Conversation shut down. Other kid red faced, head down, walking out of the room. Other adults in a stunned silence and me cackling like a witch on Halloween. “Boy did you just play the sick kid card?” “Yep! And I am right, nobody is allowed to complain until they go in the hospital.”

It was a beautiful thing.

With “normal” numbers I feel a relief and weight off my shoulders. The worry has subsided, but the story will remain forever and always.

Monumental mundane moments

Sometimes the biggest things can happen in the mundane that can betaken for granted.

The boy has a strong will to do what he wants to do when he wants to do it. I think he gets that from his mom. :) From the beginning he has dug in and decided that he was going to do what he wanted. That was his school marching band at the time. He missed more than he wanted of it, but he did need a tiny bit of recovery from the ICU. Three days or so was enough for him.

He did pace himself, his pace was just well above what everyone around him thought it would be.
Once that season was over he crashed physically for awhile. But he moved forward with so much more. He focused so hard on school. He was determined to prove teachers wrong. Not only could he keep up with his college level courses..... he was going to pass them with flying colors. And he did just that.

The boy has always been easy going. Even to a fault. He is a laid back, introvert with a heart for second and 5th chances. He doesn't rock the boat. But then.....I saw that look on his face from behind the Bane like breathing mask. He "rebelled" and tore out the intubation tubes and defied the doctor by not allowing them back in. I As I held his arms and he fought that claustrophobic thing on his head... he turned his head to me and looked me dead in the eyes. "They WILL NOT put that back into me." The fire in those eyes was scary. It was determination and will that I hadn't seen in him. It was like looking in a mirror. :) And he did it. And he went on doing it each and every day since then.

This week when we got a fairly good amount of snow and a snow day he at the age of 17 went out to play in it. Precious moments for his mom. We spent two hours building a boy sized snowman. Not an easy task since he is 6 feet tall! Wet, cold, partially frozen we struggled to get it just right in size and then to actually build it. You see the "torso" was so big we couldn't lift it on the bottom. The bottom had gotten so big we couldn't roll it. I tried to give him alternatives. He would dig in and say no. We will get this. And we did. And an hour after he was done, the sun and melted the snow enough to make him topple over.

Parents have asked me over these past few months how I motivated him. He has taken his SAT and picked a college. He is moving forward with his studies towards that goal. He has a big plan for his major and what he wants his life to be. He has played his horns with power and love. He stays at school some days for 12 hours between classes, teachers and rehearsals.

I would love to take credit for this. But I can't. I didn't motivate him at all. I supported him, but he is driving this train. He found faith in himself and God in himself to go forward with life. He doesn't outwardly talk about faith but it is there. He knows that the life he is living today is an answer to thousands of prayers. So mom doesn't need to motivate him....he has this covered.

ALT update

As I have fallen off the wagon with posting this stuff in a timely manner... here is an update! :)

The boy has had a miraculous turn around. In November we were taking transplant. In December it was still on the table, but not still on the table for 2014. And then January came. Oh how we loved January.

The liver dude walks into the room with a piece of paper and a giant grin. On it are some magic numbers. The boy's levels are almost NORMAL! His ALT (angry liver things) is just 9 points from the normal range. So exciting! They stuck him for blood to check for anemia, scheduled more labs, which we had today but.... he has been cleared to move to every other month appointments! Did I mention I was excited?  This doesn't "cure" him. But it means he should continue to feel better and that the meds are working. 

The liver dude was very pleased and feels very comfortable with where things stand right now. We just keep swimming. 

Sometimes words fail, not often, but they do.  I cannot express the awe I have over this. I have read so much in these past five months. I come from a family.of "need to knowers" so I got it.honest. I hear stories of young ones with similar or less scary situations who have struggled and had transplants. The blessings in my boy's life are astounding. His health, his life is a walking  PSA for faith. 

Home

"I have never loved you.We never should have gotten married."

It was seven years ago today that I came home to those words in a letter on my kitchen table. I fell to my knees trying to stop the world from turning upside down. But it still did. The life I had planned, the design I had made still imploded on itself, whether I liked it or not. Which, for the record, I did not ONE BIT.

I spent months in a haze, I spent years in therapy. I worried myself to panic attacks and loss of sleep. My boy. I never wanted him to be from a broken home. How will he cope? Will he be scarred for life? Will he become some depressed or angry teenager? I just didn't know. 

It was in this dark time that I found a church family. But to fully grasp this I have to explain... I had no desire to have a church family. I wasn't a Christian, I wasn't a Bible thumper, I WAS NOT one of them. 

But.....I was a stay at home mom who had no roots in this community. I was 300+ miles from my closest family. I was scared and alone.

So one day I told the boy we were going to go to church. He was ten... and didn't even know what church really was. He of course thought me nuts. But he was ten and had to go with me. We started at a building near our house, a very non-churchy building. No steeples, no crosses or dead Jesus on the wall. I had every intention of still hating it, but now I can say we tried! And now seven years later we are still there. These crazy church people are family.

When the boy ended up in the hospital they were the first people there and in large numbers. The little waiting room was wall to wall with them.  When the ambulance rolled into the ER...they were there. When the nurse came out to talk to me while he was being admitted, she stepped into the waiting room and asked who was there for the boy... they said we all are.

The boy hasn't felt much like being up on Sundays since his hospital stay so he has missed a lot of "church." The people don't care, they love him anyway. They ask about him. They care. We are home. A home I never knew I even wanted. One I may not have fully realized until now.