Friday, June 8, 2012

My Life - the Last Few Weeks: A Documentary

I don't even know where to start with this post, so I'll start here:
My son is ill.  Very ill.  The last two weeks have been a personal hell for him and the rest of my family, and it is not something I would ever wish upon anyone.  Ever.  Some of this might seem graphic and gross, and if you are sensitive to that stuff, then go ahead and move on to another post.  I have even left some of the really gross stuff out because it is really gross.  But this is not my typical happy and make believe and fairytales type of photography that I adore.  In fact, this is real life caught on an iPhone, and it hurts.  It is also my work, my eye, and my creative mind, so even though I didn't logo these images, please don't use them without my permission.

Two weeks ago, I threatened to divorce my husband.  Not because he had really done anything wrong, but because I was exhausted and over-worked.  We have so much going on at the moment with school, pictures, recitals, animals, work, and more that I don't sleep on most nights.  If you add one more little thing into the mix, it just pushes me over the edge.  And that is what happened.  Drew got sick.  And I got no sleep.  At all.  And I became a very grumpy person.

In the middle of our crazy, stress-filled life, and the constant running around 24 hours a day means it is hard to take the time off to slow down and relax.  It is also difficult to get sick and take the time to get well.  It's hard to put things in perspective when you have deadlines to meet.  Yet, things like this happen, and it makes you stop to appreciate what you have.  Yes, please slow down and hug your loved ones!!  

So two weeks ago my son got sick.  We thought he was faking at first because he didn't want to go to school.  That was until the school nurse called and said he had a 102.5 fever.  What?  Well, crap!  I felt like a horrible mom.  I swore he was making it up that morning.  By that afternoon, he was throwing up and having a lot of stomach pain, and a lot of diarrhea.   There was a stomach bug going around and I thought - okay, here we go again.  

Lots of Lysol, bleach, and Clorox wipes later, my son had stopped vomiting, but was still running a fever.  He also had lots of diarrhea.  None of the rest of us were getting sick, but after 3 days, something wasn't right and we were worried about him getting dehydrated.  So off to the doctor we go.  She agrees that it is just a stomach virus and sends us home with some anti-nausea meds to help his stomach. 

The next few days are awful with my son screaming in pain for hours at a time when he has to go to the bathroom.  For those of you who don't know, he is ADHD, and we don't know if it is that or if it is just his personality, but he can be a bit dramatic.  (Remember him giving Santa a chase?  Read about it here.)  Sadly, we thought he was getting better and he was just trying to get attention.  It's kind of like the little boy who cried wolf.  We didn't think much of it at the time.  And the anti-nausea meds were masking some of what was really going on.  By day 4 of this mess, he got up and played a little bit, and I thought the worst of it was over and we were on our road to recovery.

Then day 5 came.  It was pretty bad.  He really didn't want to eat or drink anything.  I could not figure out why he was worse again.  Plus he was still running a fever.  I was starting to panic that something was wrong.  Many phone calls later - to my mom (an RN), to his doctor, to my nurse practitioner friends, and to other moms, we decide to hold off on taking him to the ER that day.  But at the first sign of anything getting worse or anything that was not him getting better, we would go to the hospital.  

Late that night, we got that sign.  There was blood in his diarrhea.  It wasn't much, and we thought it was just from how often he was going, so we thought we would wait out the night.  It sounds really horrible when I type it out or tell someone.  It's not like we were just watching him suffer and doing nothing about it.  We were constantly monitoring how much fluids he was taking in and putting out.  And we still thought he just had a bad flu.  There isn't much you can do about the flu.  

A few hours later however, he screamed and screamed in pain.  Then what should have been diarrhea was not.  It was pure bright red blood.  I freaked.  Made lots of calls, and finally got a hold of the ER doctor who knew we were on the way and was getting ready for us.  We rushed out of the house and thank goodness for friends, because I stuck Mackenzie with a good friend who didn't mind taking care of her for me.  

A lot of people make fun of the hospital where we live.  It's in a small town and it isn't really equipped to do a lot with children.  But we've never had a negative experience there.  They were very nice in getting everything started, and right away they were upfront with us about what they could and could not do.  They put in a call to All-Children's Hospital in St. Pete when they saw how serious this was.  I didn't realize the entire situation was that serious at first until that point.  I still thought he had the flu and was just dehydrated.  This is when I took the first picture.  

We had gone through triage and they were trying to figure out what was going on.  They took us to Cat Scan to check his appendix and any other issues going on in his little belly.  My poor son is so afraid of all of those machines and equipment.  He is terrified of doctors and nurses and needles.  He is really affected by change and all of the things that affect is sensory disorder.  Most of the time he puts up a huge fight.  But he was so sick, there was no fight left in him, and he was just really brave.  

He was severely dehydrated at this point because he had stopped eating and drinking sometime in the night before.  He was still having diarrhea about 20 + times a day, even though it was now mostly blood.  They started him on an iv and told us they didn't really know what was wrong.  Possibly his appendix because it was swollen.  They call a surgeon at All Children's and get him accepted as a patient, and whisk us away in an ambulance pretty quickly.  

At this point my phone dies b/c I have been on it so much.  I would have taken a picture out the back of the ambulance door if I could.  It's interesting to watch the world blur by you from the back.  Nothing like watching it go around you in the wrong direction.  I have had to make this ride one other time, and that was when Mackenzie was a newborn.  It's never a good thing.  

We finally make it there after what seems like an eternity.  Even though the EMT's are very nice and they drive really fast, they cannot calm my disorders.  I am terrified of the interstate.  I deal with it b/c it is a part of life, but I hate it.  I also have a huge fear of bridges.  Put the two together, and I am in a downright panic attack. And to add to that, there are no seat-belts in the back of the ambulance for me, and it just freaks me out.  Stupid right?  After being in a serious car accident, I really wanted my seat-belt.  I had to be brave for Drew, and I had to keep looking at all their medical equipment.  LOL.  I knew they would help me if we had an accident.  Gosh, I'm such a nut job at times.  Even so, I was relieved to see this place:

I hoped they could figure out what was wrong with my little man.  My husband was there and is so good at keeping Drew calm and focused.  But even he couldn't fix this.  The ER was slammed and poor Drew was left many times without medicine for pain or with an empty iv.  The iv was crucial at this point.  And while I know they have more serious cases to tend to, there is nothing worse than watching your child suffer and cry for hours and hours when there is nothing you can do about it.  We were able to distract him with cartoons for a little bit.  I snapped this picture in one of his better moments after the nurses gave him a cool pillow.

The hospital is decorated with all sorts of cute and whimsical kids art.  Yet we get this grumpy guy outside our door:

It makes me laugh because that is pretty much how I felt, and we live right in the middle of a bunch of orange groves.  Go figure.

They took us to ultrasound to get a better look at his appendix.  We met with a surgeon and he said it was swollen and they would watch it and maybe operate on it if it got worse.  They also wanted to see what else was going on down there.

We were once again able to distract him with cartoons.  Thank goodness.  You can see in his face how sick he is there.  

We waited for an eternity for results.  The best guess from all of their tests, scans, bloodwork, and everything was either gastroenteritis (infection of his intestines - which we knew but it didn't tell us anything), or possible appendicitis.  So we watch and waited.

They took him off the IV to see how he did, and he got worse.  Complete with more screams of pain. (It really is the worst sound in the world!)  So after a very long day, they finally got us our own room and admitted us.  I took a few minutes to get a break and get something to eat.  It was dinner time and I hadn't eaten all day.  That's a very bad thing for a diabetic.  On the way to the cafeteria, I stopped in the chapel and said some much needed prayers and took these pics of the gorgeous windows:

Then we were up to our new home away from home.  It was a full eight stories in the air.  Pretty cool for a country girl who doesn't get much higher than two stories on a good day.  We had a great view of the sunset and a lot of hope that they could get poor Drew all straightened out.  Or at least stop his pain. 

We didn't really know what was wrong with him, even after more tests, so we were put on isolation.  The nurses and the doctors had to suit up to come in our room.  It's quite depressing to be confined like that.  

The St. Pete skyline out the hallway window.  Oh how I wish I had my D3.  I can't help it.  Even at a time like this, I think about what settings I would use and I am lusting after my tripod.  I am a pathological picture taker. 
 It really is beautiful isn't it? 

That was the last beautiful thing I got to see for a while.  I had one of the worst nights of my life and no break after this for over 12 hours.  My hubby had to go home to take care of himself (he had worked a 16 hr shift and had been up for 24 hrs), and to take care of our animals.  I had rushed out of the house early that morning without any prep or anticipation of not coming back.  I hated that he had to leave.  I am still angry (in an unfair 3 yr old tantrum way) at him for not being there through this.  He is my rock and I lean on him a lot, so sometimes I struggle when he isn't around.  It was just this was the worst of the worst that night.  And I was left to deal with it all, with no help.  And have I mentioned I hadn't slept in days at this point? Sigh...

The nurses in the hospital are so overworked too.  If I had not been there, I don't know what would have happened to my little Drew.  There was no way he could walk on his own to the bathroom.  He couldn't even get up out of bed on his own.  What do they do when I parent can't show up?  I couldn't even use the bathroom b/c I couldn't leave him for more than a few minutes.  Plus they were measuring everything that was coming out of him and a lot of times they wouldn't be able to come in for hours at a time.  So all this nasty stuff would just sit there.  And I had no bathroom to go in.  Many times, Drew couldn't make it to the bathroom (hence the pull up) and he would just sit there in his own filth while we waited for them to bring us supplies to clean him up.  Don't get me wrong, we had great nurses, but they had so much to do and so many patients to attend to that they took forever in getting around to us.  

At some point in the night, he was still having diarrhea that was still nothing but blood really, and he got to the point where he could no longer pee.  They were pumping a ton of fluid into him through the iv, but his body wasn't processing it, and it wasn't coming out.  This was not good.  I started to get scared.  Very scared.  His body was shutting down, and his kidneys weren't working right.  And no one had any clue why.  There were lots of screams of pain, even with a constant supply of morphine.  At one point, he thought he was going to die and started crying for his sister and daddy to come be with him.  This is the point where I lost it.  I got him in bed and went out in the hallway and wept.  

Then we got into an emergency situation because of the not being able to pee issue.  We had to put a catheter in him to try to empty his bladder since he couldn't do it on his own.  The problem is that he is awake and alert and absolutely terrified of this.  They called in a team of nurses.  It took nearly 2 hrs of us holding him down and him fighting us to accomplish this task.  Words cannot describe how horrible, horrible, horrible this was.  Not only did I have to watch him take all of his energy to try to fight us, he didn't understand why I was helping them.  He screamed at the top of his lungs and begged and pleaded for me to stop and help him.  These huge brown eyes were just terrified and full of tears looking at me and begging me to stop.  It was as if we were torturing him.  It was one of the worst things I have ever had to do in my life.  I had nightmares about him screaming for me to help him that night and a few times since.  He didn't realize that he would die if we didn't do this.  I knew this, but it didn't make it any easier.  I swore to the nurses I would never, ever do that again.  Next time, they get someone else.  

Drew and I finally slept out of pure exhaustion for a few hours.   

These are the forms we had to fill out so the staff could better understand about my son's needs.  The sensory issues make everything at the hospital seem one hundred times worse, and it takes a lot to calm him down.  I was really worried about explaining all of this to the doctors and nurses, but they were able to identify it within a minute of being around him.  I just wanted to hug them for that.  I can't tell you how many times people don't understand my child and blame us for poor behavior or for things that are completely out of our control.  Things like getting shots.  Nobody likes getting shots to begin with, and it's just that much worse for him.  I can't make him behave for a shot, no matter what I try.  It's just something we have to deal with.  It doesn't make me a bad parent.  That is just who he is.  Anyway, they completely understood that here.  And I loved them for it.  

The next morning was the worst.  A team of doctors came in and ran some tests.  They still couldn't figure out what was wrong with him.  They took extensive medical histories on all of us in the family, and still had nothing.  It made me think of Dr. House.  Oh how I wish he were a real person at times.  

The surgeon came in and said his appendix was still swollen and for us to be prepared to have surgery later in the week if it were to get any worse.  They couldn't figure out why it was like that though and it wasn't presenting with typical appendicitis symptoms.  Then the head pediatrician comes in and tells us that his is too ill for surgery.  They cannot operate on him while he is having these stomach and bowel spasms and cramps.  It is too risky.  They have to work on getting that calmed down and getting him to pee again before they would attempt surgery.  The doctor wants to order new meds to try and takes my son off of the morphine.  She tells us to get prepared to spend the rest of the week at the hospital. 

They leave and no one comes to bring my son new meds and no one comes to check on us for several hours.  Once the morphine wore off, we were back in the bathroom screaming in pain.  Words just can't describe it.  He was screaming at the top of his lungs.  I knew he was hurting and there wasn't anything I could do about it.  I called and called the nurses, but nothing happened.  They were waiting on the doctors orders to go through the pharmacy.  Seriously?  I even opened the door so they could hear how bad he was.  Nothing.   

A view out our window.  The support beams look like a cross.  Lots of praying was going on.  At some point Drew started screaming for Kenzie and Dan again, and he thought he was going to die.  At this point, I was beginning to wonder too.  

I could not stop crying.  I would walk away from him for a few minutes to get a tissue, wipe my face, and then go back in the bathroom with him and try to be strong.  It was like going through hell.  Or a war.  It was so physically and emotionally exhausting for me.  I can't even imagine what it was doing to him.  

After several hours of this, the nurse brings new meds.  They do nothing.  Doctors come back in and decide to put him back on the morphine.  Finally, we both get some relief.  The dr. also shows me where there is a bathroom I can use down the hall.  

After lunch time, my hubby is finally able to make it back to the hospital.  He is all fresh -faced from a full night of sleep and has no idea of the horrors we have had to face.  He at least brought me a Krispy Kreme donut - which was wonderful b/c it had now been about 18 hours since I had anything to eat or drink.  

He tried to pack me a bag, but I had no hairbrush (he shaves his head so he didn't think of it).  I had asked for socks and jeans b/c it was cold in there.  I got boot socks that go up to my knees and shorts (really??), and a pair of my daughter's underwear.  Seriously???  I was flattered he thought I was that skinny, but ummm....

He brought Drew his favorite pillow pet from home.  My son loves Eeyore.  He also has a little stuffed one he's had since the day he was born and in the NICU.  But Drew got sick all over him and his baby "silky" blanket and we couldn't use them.  We were trying to wash them in the sink and air dry them, but it wasn't working.  

Drew's measurement in metric.  He had lost about 10lbs already at this point.  That's about 1/5th of his body weight.  It's a lot for a little guy. 

Paige was a really nice nurse, and we had her for a few days.  She worked hard to keep Drew comfortable and even found him toys to give as a prize when he had to do something really challenging, like more cath procedures or blood draws.  

We made plans to stay for longer.  Kenzie was taken care of by our friends.  I was so tired.  I was supposed to drive home that night, but knew I would never make it safely.  I was also terrified to leave my son b/c he seemed to be worse instead of better.  

The next few days are more of the same.  No answers.  We cannot figure out what's wrong.  He's in terrible pain and his kidneys were getting worse.  All the morphine was making that situation worse.  The only view I got of the outside world was from the large window in our room.  A tropical storm was hitting North Florida, and I only knew about it from the facebook notifications I was getting on my phone, and the few gray clouds that mimicked our somber mood.  

On one of my few journeys away from my son to go get food from the cafeteria.  My husband was there, so one of us was able to sit with him and one was able to go.  At this point, it just becomes a blur of bad stuff, and I don't really know what day we are on at the hospital.  They do have this really cool chandelier in the lobby.  It's huge in person and really breathtaking.  I thought it would be really fun to do something like this at home in a smaller scale.   

One night, we are starved for food.  I use my phone to find a Publix and make a break for it.  It feels surreal to walk outside the hospital.  I was met with a gorgeous night sky.  

My Publix shopping trip was successful.  We don't live near one, so it's a treat to go there.  We got Publix subs (which always make me think of eating them at FSU), and I scored some Cheerwine! (A soda from the Carolinas.)

The doctors still didn't know what was wrong with Drew.  They decide to try more medicine and different kinds.  They take him off the morphine and change some things.  After several more catheter procedures in which I helped even though I said I wouldn't, he finally was able to start peeing on his own again.  We don't know why.

They decide to let him try to eat some food.  It's the first food he's had in a week.  It doesn't go well at first. It actually sets us back to the whole pooping nothing but blood phase.  But eventually, it starts to get better.  Again, we don't know why.

This was the first sign my son was starting to get better.  He's being silly and sticking his tongue out at me!!  He actually felt well enough to tease me.  We become hopeful that the worst is over!

More of not leaving the hospital room.  This is my view from the hall window.

More gray skies, but a pretty skyline below me.  

I love this pattern on this chair.  It matches my studio colors!  The entire hospital matches my studio.  It was bright and cheerful, and I would have taken it home with me if I could.  That was until I tried to sleep in it.  You fold it out, and supposedly go to sleep in it.  But it was the most uncomfortable thing.  Plus it collapsed on me twice and ended up dumping me on the floor in the middle of the night.  I woke up the whole room cussing up a storm.  Drew thought this was the funniest thing ever.  I hate you now chair that I once loved.  

All the time we were in the bathroom - and it was a lot! Most of our stay in fact! - I always stared at this sign.  It's just teasing me to pull the dang cord.  It's like a big red button that says "Don't Push" or "Don't Touch".  You know you have to touch it.  I almost did it, but decided to take a picture of it instead of making the nurse mad.  

At some point, I go home and sleep.  Lots and lots of sleep.  I go and scoop up my beautiful daughter for a little bit.  I was supposed to leave her behind and go back without her, but neither of us want to be away from each other.  She really wants to see Drew too and doesn't quite understand what's going on.  I stay away for an entire night and leave my husband to deal with it all.  He's upset that I do this to him, but I am still upset he did it to me when it was so bad.  We are all exhausted and grumpy.  

But while I am away, we get good news.  The new medicine is working!  They still don't know what it is and are still calling it gastroenteritis.  But they are able to get him to eat and drink and pee again.  He is still having bloody diarrhea, but it is a lot better than it was.  He is also finally taking in more than he is putting out.  After a day of this, they say they will send him home and the pediatrician at home can follow and monitor him!!  It's good news, but I am very nervous.  He is still really sick.  They think he will continue to get better on his own, and by the start of the next week, he should be able to return to school.  

Kenzie finally gets to visit.  Drew is up out of bed for the first time in a week.  They are watching a life flight helicopter land on the rooftop across from us.  It was pretty cool to watch, but I prayed for the person in there.  The kids think the helicopter is the greatest thing ever.  Kenzie thinks the hospital is like a hotel or resort.  There's all you can eat pudding and jello, and a ton of kids cartoons and play rooms.  She didn't really understand.  

Drew has now missed 2 weeks of school.  His classmates send him a ton of get well cards and he is so excited and surprised.  It really cheered him up.  I cannot tell you how much this boosted him up and made him want to get better to go home.  

Here he is reading all of his cards.

Finally, finally, he is able to eat enough that they let us go home.  I still question it, but we are supposed to see the Dr. at home the next day.  We are so excited, and exhausted, and relieved.  We are also hopeful.  

This was the best sign ever!  Finally on our way home!

Yet, when we arrive at home, we get some shocking news...

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