Raw

This post will probably have a lot of 'I' statements in it this time. If you think that might sound selfish and you won't like it you should stop reading and go back to scanning facebook posts about funny cats.  It's OK.  It's what I do when something makes me uncomfortable.  Like posts about my friends' son's birthday who would have been 14 today if not for a terrible accident when he was still very young. I only read the first three words and I burst into tears. Losing a child is the worst and heaviest burden of them all.  I am sure of it.

Even now as I type these words, my hands shake from the effort of trying to contain the powerful emotions that threaten to stop this day in it's tracks.  My son is sick.  It's unlikely he'll die in an accident.  He'll just wake up everyday a little closer to death.  Some days he finds he has taken just a few sidesteps - it doesn't feel closer.  Other days we can clearly see that he took 3 giant steps forward.  There's nothing for it.  It's coming.  Like a fin in the water pointed straight for you and no land in sight.

I cry more now.  Some days are unbearable.  Other days I manage to function like life is "normal". But you have to know most decisions I make are run through the filter of, "Will this interfere with Micah having as much chance at a normal life as I can give him?" I hate it.  I HATE IT. It robs everyone I know and care about. Bethany has to grow up faster.  That's not all bad - but it means less time to attend volleyball games or basketball tournaments. She is often the other Mom around here. It means I can't help build sets for Rebekah's plays or chaperone field trips. It means I can barely pay attention when Herb is trying to tell me about his day. He needs me - and I'm mentally unavailable. Herb's Mom, Lenora, lives with us and she's disappearing from this reality as Alzheimer takes over - I'm running out of time to give her good experiences before the hallucinations are all she has.  Corban is only 3.  He doesn't really understand how much he's not getting but I know. It's like Paul, my first husband all over again.  All the good things were poisoned by his death which was the same shark that stalks my son Micah now. And because of the needs of my littlest son and his Grandmother I can't be with Micah at the hospital as much as I should be supporting him and learning about his care and treatment. He's isolated, unable to visit other patients with mostly only nurses, and RT Specialists as friends. Adults are nice - and can be so kind.  Micah's youth pastor has taken the extra effort to be there for him so much more than I think he has time for.  The music pastor has tried to reach spend time with him but Micah isn't always well enough. But he needs friends. People his own age. Peers. The friends were the first to fall away.  It's always like that with long term illness. But the loneliness is so hard to watch.  I can't fix it.  I'm a mom.  Mom's are great. But a person wants to be loved and missed and pursued  by their peers.  It's what we all want.  I can't make that happen for him.  How does a mom go scrounge up friends for her son?  If you know - please tell me.

Before you jump to conclusions - I know how this sounds.  I can't and shouldn't say any of these things.  In fact I rarely do - even to those closest to me. I only do it now because of how much care people have expressed.  The questions I get asked that I politely answer in as balanced way as I can so I don't lose all my friends who can't deal.  But if Micah hears or sees these things he might get the idea that I resent him or blame him on some level. Which of course is just ridiculous and not true.  But our hearts are so soft and we often perceive our fears as true if there is any evidence, real or imagined, to back it up. But I think people need to know, need to understand the million tiny ways something like this effect every single area of the lives of those attached to it.  Don't you think I want to volunteer to make that casserole or attend that meeting or help in the nursery or be on the worship team? I feel judged but really -  I judge myself. How do I reconcile all these things I think I could and should be doing when the only ministry I am have time for is my own family.  I could help.  But I can't. Be all you can be?  Whatever. I'm trying to shut my ears to the requests that are everywhere.  It's very, very hard. If you have a "normal" family that gets up, goes to school or work, comes home and spends their evenings and weekends however they decide cherish it.  Hug it close and thank God.

In the end all I want is for Micah to have as many chances to squeeze into his shortened life so many of the things we take for granted because we have DECADES for things to happen to us by chance. But life is very demanding and dinner still needs to be made and I really can't put the rest of the family's lives on permanent hold because of this, can I? Should I?

I wish there was a miraculous cure but there isn't
one. So there it is - for those of you who are still reading.  The truth is there is no cure.  They barely understand the disease he has. And a lung transplant is all but ruled out. If he doesn't die suddenly from some kind of massive pneumonia they can't fix then this thing will go just like his Father. Slow - long - the disease will take him to the point where he is bed ridden and on a ventilator and tube fed exclusively because it's too dangerous for him to eat. Until his heart fails.  This is our future. How can I care about anything else? Teachers? Policemen? Politicians? Bosses? Friends?  Debts? How can I care about anything else? There IS nothing else.
I try to redeem anything negative I say or write with something up. But sometimes there just isn't one. I don't need any comments.  Don't feel obligated to cheer me up.  But if you are in a position to do something for someone who is in shark infested water - do it. DO. IT.

 

do

verb (used with object)

1.

to perform (an act, duty, role, etc.): Do nothing until you hear the bell.

2.

to execute (a piece or amount of work): to do a hauling job.

3.

to accomplish; finish; complete: He has already done his homework.

4.

to put forth; exert: Do your best.

5.

to be the cause of (good, harm, credit, etc.); bring about; effect.

The Long Summer

When I first started writing this post it began, "It's been about two months since I've had time to post but it seems much longer."
Well, now it's been three months because that's the kind of Summer it's been. Kind of nuts. Now I'll write what I can off the top of my head because that's all I have time for. So again, I apologize for poor grammar and turn of phrase. Thanks for understanding.

When we last visited our hero:

G-Tube: We spent the Summer trying to get the hang of this new tool in his arsenal. It got off to a very shaky start. I wasn't able to attend the training so learning it on my own felt like I was trying to rebuild an engine with the instruction manual in Mandarin. I don't speak Mandarin.
Once we got past that it took us two days to figure out that the beeping alarm every 10 minutes wasn't due to our lack of knowledge or skill but a malfunctioning pump. We ordered a replacement. It wouldn't hang on the pole correctly and kept flipping upside down. Herb macgyvered it so we made due for few more days for the replacements replacement.
Technical difficulties behind us Micah and I finally got it figured out but then the real trouble started. Gaining or even maintaining weight has been nearly impossible for Micah. So getting these nightly feedings figured out was vital. The formula the dieticians prescribed were making him sick. If we ran the pump at the rate needed to finish in less than, say, 10 hours it made him very sick to his stomach and he would have to turn it off early. It just wasn't working. By his six week follow up appointment he hadn't gained any weight. In fact he had lost some. The Dietician did some digging and found a different formula that claimed to easier on the stomach. Over the next several weeks the night feedings continued to improve and he got them up to the desired rate so they could run and finish while he slept. So that's the good news. The bad news... his queasiness during the day never got better. In fact it got worse over time. He often woke up sick to his stomach and his appetite continued to get worse to the point he would barely eat. It took us a while to figure out what we thought might be going on which brings us to...

Atypical Mycobacterium: Back in May a lab test revealed a diagnosis of an atypical mycobacterium.  We didn't know that that was either - so don't worry about it. We've since learned among other things it causes fevers, diarrhea, malabsorption and anorexia, and can disseminate to the bone marrow. But we also learned it would mean a serious attack of antibiotics were called for and a new specialist Dr. Winthrop from Infectious Disease at OHSU. We learned treatment involves a combination of antibiotics, including rifampicin, amikacin, ethambutol, and azithromycin over a long period of time - sometimes up to two years. It's not something to be taken lightly and it's not something he will be able to get rid of. At best it can be beaten back. Anyhow, Amikacin was administered intravenously twice daily through a PICC line for several months. It's pretty powerful stuff and we had to keep close watch on his kidneys and hearing which can be damaged during treatment. The other drugs are oral and he's been taking them for months clear up until last week. Meanwhile...


Hospital Stays:  There's been too many. It seems that Micah has spent more time in the hospital this year than he has at home. I've been trying to press in and learn all I can and be more available to Micah to help him manage his care but it constantly feels like we're juggling full glasses of water while trying to balance on a teeter-totter on shifting sand. Our family also has Grandma Gentert living with us who has Alzheimers and a three year old (Micah's little brother Corban) which means there isn't really enough of me to go around and I'm not able to help him directly as much as I wish I could. Micah's many returns to the hospital have meant even more antibiotics in addition to those needed to battle the Atypical Mycobacterium. His last hospital stay (prior to this present admission) put him on Cipro which can be pretty tough on the stomach. While Micah's appetite continued to wane it finally occurred to me that maybe all the drugs were eating up his stomach - literally. His primary lung doc agreed. We pulled him off of ALL the antibiotics to see how he would do. Within 24 hours I saw him eating and he seemed to have a little more energy. Withing 3 days he was able to go out and do something besides lay around the house. It felt like a little victory but we were apprehensive because we knew those drugs were necessary and we were a long way off from the end of the treatment plan. Within a week Micah started feeling horrible and last Thursday evening I had to take him to the ER and they admitted him.
He is doing better - they're throwing a lot at him right now. All the antibiotics are back - plus a couple for his current infection. They're working hard to help him gain weight since eating calories is a bit touch and go for him still. Prayers are welcomed. Matthew 18:19

It hasn't all been sickness, frustration and hospital stays. Some really excellent things have happened too. But that will have to wait for my next entry. Soon. I promise.

G-Tube Surgery

Micah had surgery to put in a feeding tube this morning.  It went very well.  We were reassured that it's a very routine  surgery (we knew that) and they do them all the time.  But of course it's not routine to us and Micah went in fairly anxious.
But now he's recovering back in his room with the aid of some morphine and after some time and rest (and more morphine) he'll try a tubefeeding later today.  The pain is still significant at this point.

He will have to stay for at least a couple of days to make sure everything is working like it's supposed to. Then they'll add a regular diet and make sure he does well with that before he can go home.

The look on his face during early recovery seemed to contain several emotions.  But mostly he seemed to be protecting his incision and looking upset like "this isn't what I thought it would be like".  I have to assume it would be a little freaky to have a port in your belly. Don't you?

I'm sure you have questions.  I did. Feel free to ask.

Up To Our Eyeballs and Celebrating

We've entered a very busy season in our lives:  Holidays, end of the school year, finals, colds (including mine), makeup homework for sick kids, Spring cleaning, trips to and from and to and from the hospital but most of all graduation. 

Friday, June 8th is the North Marion High School commencement ceremony.  Micah completed his standardized tests and then his GED and is walking with his class during commencement.  While not the usual path to high school completion, we are still very excited for Micah as he crosses this threshold towards adulthood. 
Micah made the call himself  to pull out of the regular class day when he began to see that hospital stays were becoming more frequent and his chair time in class was inadequate at best.  An Oregon student must spend a certain number of days in the chair receiving instruction in order to receive credit in that class.  Even if a student shows up, takes the final and aces it proving proficiency they still can't earn the credit unless they've done the time.  It made it difficult for a student like Micah who spends several weeks of each term tucked in at the hospital unable to even attend the well run Doernbecher hospital school because of 'quarantine' protocols (see earlier blogs).  So after looking at all the options available he decided the GED was the best path for him.  Passing all the tests without difficulty (in-between hospital stays) he is now welcome to walk with his classmates.  We are very proud of him and his accomplishment.  At the time he made the decision we weren't sure it was the right one, so many thing he might miss as a result - but given how this last school year as gone for Micah medically - it turned out to be the best decision by far.  He is so ready to move on with the next stage.  One more major accomplishment checked off.  Congratulations Micah.  You've earned it.

MEDICAL UPDATE:  Micah has spent the better part of May and into June in the hospital. He came home for about a week and a half but I think he may have caught the cold that was going around the family and had to go back.  He just felt really crummy and short of breath so it was clear he needed more help.  He did get to come home again on Wednesday evening 6/6 but only so he could attend his commencement.  His doctor will call on Friday to check on his condition and Micah plans to return to the hospital on Saturday to continue his treatment.  We're all working to get him his best so he can have a g-tube surgery.  It has already been rescheduled once because he just wasn't well enough.  Micah really needs this to help him get the nutrition and calories he needs to stay healthier.  He struggles to stay above 110 lbs and that really isn't enough for a young man his size and age.  His caloric intake he needs per day (around 3500) in order to gain weight and to make sure those calories have more than adequate nutrition has been an ongoing battle for the last several years.  Micah has finally decided on his own that this is what's needed to help stabilize his health.  Prayers are welcomed - this is important and we would like to get on the other side of it.  Thank you!

Micah Update & TGI Child Life!

I just got off the phone with Micah.  He was busy having a nebulizer treatment so we didn't talk long. He has these treatments very regularly in the hospital and it's an important part of his health plan both in-patient and at home.  It's difficult to have a conversation during the treatment because he needs to keep the mouthpiece IN his mouth and it's very noisy over the phone.  So I'll call him back later.

His mood seemed pretty good though and it sounded like he had some company.  Kim from the Doernbecher Child Life program (click the link and scroll down to see her - third from the right & one of the best listeners I've met up there) was hanging out with him while he plays his guitar.  She's been a big part of our lives ever since Micah first started spending time at Doernbecher.  She has been there with us through some very dark times when Micah didn't have anything nice to say to anyone.  And when I was the last person he wanted to talk to - she was there.

One of the services Kim and her fellow staffers provide Micah is tools to keep him occupied.  I'm guessing most people don't know that Micah is usually under house arrest when he's at the hospital.  That is to say, he isn't generally allowed to leave his hospital room.  A few years ago one of his labs showed he had MRSA in his system.  Since this can be very dangerous to some, especially Cystic Fibrosis (CF) and cancer patients undergoing treatment, his germs need to be contained.  Hospital staff have to wear special gowns and masks anytime they enter his room and these are discarded as they exit the room.  This helps protect other patients from cross contamination.  His labs have been clear of MRSA for the last few labs but once it's in your file it is very difficult to get the hospital protocols removed.

So for years, every hospital stay, (which is on average two weeks long) Micah is not allowed to leave his room.  Can you imagine being trapped in one room for 12 days with nothing but limited cable and a DVD player?  That's sounds great to me - for about 3 days.  To a seventeen year old young man?  That's jail time.  So that's where Child Life and Kim come in. They'll loan him a laptop to get online, or an XBox or Playstation and movies and games to play and sometimes even a video camera with which he gets creative.  (More on those later.)  In the last few stays he has finally been allowed to leave his room as long as he wears a mask.  But he still has to stay away from, and out of the rooms of, CF patients which it turns out are many of the kids his age that are up there.  So loneliness is still a problem.  Kim and her team sure give it their best though and I for one have been very grateful.  It gives us something to do and talk about that isn't the elephant in the room disguised under all those tubes and wires and clicking and beeping machines.  Stupid elephant.

Micah Dron - It's Time to Talk

This blog is about my son, Micah Dron.   He is 17 years old and he has bronchiectasis .  My reasons for writing about Micah and his life are many.  Its a great way to keep family and friends informed.  Its a tool to help me process all that is happening in Micah's disease and treatment and all the thoughts and feelings that go along with it.  But at the top of that list is that the years allotted to him will be fewer than most people get and you may never have the chance to get to know him. And Micah is a person who should have a chance to be known.

Now, I'm no writer. So this blog will not be eloquent by any stretch. I will say things that might not make sense to you. I may vent.  I may yell.  I may cry or celebrate.  I may tell stories or just give information about the latest developments in his treatment.  It's hard to say. 
I am a Christian and you will see faith as a central theme in my philosophy but that does not mean I always play nice.  Terminal illness is mean.  Sometimes I am too.  I apologize if I ever offend with my choice of words or language. It's not my intent to be offensive, but to just tell it like it is.  Open & honest communication. Sometimes raw and sometimes painful, but very real.
Maybe our story will educate you.  I hope you find some comfort or redemption in these ramblings.  The best I could hope for is that someone gain from our experiences.  But in truth the most I'm looking to do is to talk about my son, Micah while he's still here.  Because my Micah is a rock star.