One Year Ago...

One year ago today, Dylan got unexpectedly and inexplicably sick, throwing our lives into an out-of-control tailspin for the next six months. Once the fear of losing him was finally passed (thanks to the fasting and prayers of so, so many people!) and he was on the long and rough road to recovery, his doctor promised me that in a year the whole thing would be nothing more than a very bad nightmare. It was so hard to believe at the time. But now Dylan is running around happy and perfectly healthy, and I am sleeping again (mostly) and life is good. Really, really good.

Last night we were rearranging bedrooms and under the bunk bed we found a big box of syringes and other medical supplies left over from the time that those syringes were my life - every few hours, day and night, for months on end. I cringed at the sight of them. I am so happy to report that, a year later, the doctor was right. The whole thing seems like nothing more than the most horrific nightmare.

The Lord is so very good. We have so much to be thankful for today.

I am so glad we woke up!

Man over MRSA: Victory Declared!

Well, it's official.  I took Dylan up to Loma Linda to meet with his infectious disease doctor, Dr. Bork.  She was almost gleeful when she looked through his latest lab results.  His SED rate, his white blood cell count - all perfectly normal.  Finally!  That was what we were praying for, but almost too afraid to hope for.  It is official.  MRSA lost.  Dylan won!  Yippee!

She took him off of ALL medication, gave us big hugs, and said that although she likes us, doesn't want to ever see us again.  The feeling was mutual!

We still had thousands of dollars worth of his IV meds taking up half our fridge.  We have been holding onto it "just in case...".  This picture only shows half of it.  He couldn't hold it all!

Into the trash it goes!

Bye meds.  Bye money.  Bye MRSA.

Months ago, Dr. Bork told us that someday this will all seem like just a bad dream, nothing more.  That might be coming, but right now it all still feels pretty real to me.  In time, I suppose.

The End

Look Ma, No I.V.!!!!!

I took Dylan to Loma Linda today, and the dear doctor said that Dylan could switch to oral antibiotics and the IV could come out 2 weeks early.  Within minutes the source of so much stress and exhaustion was suddenly history!  Dylan yanked it out himself - this time with the doctor's permission.  

He was so happy, grinning ear to ear.  He said he finally felt like a normal kid without anything hanging out of him. 

Silly Dylan

I was happy too.  I cried.  I am crying now just writing this.

As we walked out of the office, the glory of this unexpected happy development began to dawn on us.  Dylan can go back to school - tomorrow!  He can spar at taekwando, jump on the trampoline, ride his bike, scooter, skates.  He can run around without the chance of taking a trip to the ER again.  No more Saturday night ER dates (so sad!). It means no more at-home nurses, no more IV dressing changes (the tape REALLY hurt to remove every week.  He HATED that!), no more in-home teachers, no more giant boxes of expensive meds at my door, and no meds taking up half of the fridge.  Dylan get to sleep in his own bed, and I...(can you hear those angels singing "hallelujah", because I can?)..I get to SLEEP!  ALL... NIGHT... LONG!!!!

I feel jubilant, like we really, really need to celebrate!  I haven't been this happy since I got that camera I wanted for Christmas.  Oh wait, I didn't get it, did I?  Well, I feel as happy as I imagined I would have felt had Santa delivered - even better actually!  The truth is I haven't felt this joyful, this grateful, this free in a long, long, long time.

The funny thing is that I have been looking forward to this for SO LONG, counting down the months, weeks, days, and infusions, and now that the time has suddenly arrived, I don't know what to do to celebrate.  The first thing I did was get on my knees and thank the Lord for his gracious mercy and abundant blessings!  We also bought a box of Krispy Kremes. 

 It doesn't really seem like enough celebration for this big, big day.  You know the parable of the lost coin, where the widow loses one of her coins, then when she finds it has a big party and celebrates finding her coin with all her friends?  Well, that is how I feel, only it isn't a coin, but a very sick kid who is finally well (almost).  I think that deserves a celebration more than any old coin!

So since I am at a complete loss as to how to celebrate, I'd love to have a few suggestions from you.  What should we do to celebrate? (Unfortunately, I have a big meeting tonight, and a YW retreat tomorrow night, both of which I am in charge of so I can't really bail on.)  Whatever we do can't cost much 'cause the IV may be out, but the medical bills will keep rolling in.

  Suggestions please on what we can do to celebrate - something worthy of the utter joy of having 6 healthy children again!

I have one idea.  Help us celebrate our found coin, our great blessing, by giving a big hug and kiss to each of the healthy children in your life, and thanking our Heavenly Father for the wonderful blessing that each one is!  I think that is a good start.

"To Sleep: Perchance to Dream!" - Hamlet

good line

just popped into my head for some reason

shakespeare was a genius

wishful thinking

oh my, just look at the time

ay, there's the rub!

A Saturday Night Tradition: Mommy/Son Date to the ER

So apparently Dylan had such a fine time on our mommy/son date night last Saturday, that he decided we should do it all over again last night.  

 Caleb was mad about something and was ornery and grabbed Dyaln's PICC line and yanked it out, not all the way, this time, but about 6 inches.  Of course, Dylan was not completely innocent.  He was on the trampoline at the time, while his medicine was in, a big no-no.

So then came the drive and there we were.  Same bat time, same bat channel.  Only this time luck did not accompany us on our date to the ER.  The waiting room was pretty busy.   When they finally saw us, they didn't know what to do with us.  This time the Vascular Access team was definitely gone, and no one would touch him.  They finally took a chest x-ray and determined that he wasn't in immediate danger of anything, and told us to come back on Monday when the VA office was open.  Terrific., because I've got nothing else to do Monday than to drive all the way back there, AGAIN.  We drove to Loma Linda last Saturday, Thursday, this trip, and now we'll be back Monday, and for another appointment this Thursday.  That will be 5 times in a  week and a half.  That is like every other day!

  But his picc line was still hanging out and flopping around, making me very nervous.  I wouldn't leave until someone did something about that.  Finally a nurse hesitantly taped it down, and sent us on our way, but not without my plopping down another $100 first.

On the way out, one of the nurses said she'd be working next Saturday night, and she'd look for us.  How nice.

Dylan's timing is impeccable.  Always Saturday night.  Remember, Loma Linda is a Seventh Day Adventist hospital, and Saturday is their Sabbath.

I told Dylan next Saturday I am tying him down to his chair so he can't pull anything out.  I just might do that.

What can I say, he loves me, and this was obviously an attempt to get some more alone time with Mom.   I just wish he would get more creative in his date planning.  I reminded him that if he is so desperate for some one on one mommy time, we could actually go do something besides a night in the ER, like, for the same amount of time and money, oh, lets say, Disneyland.

Disneyland would be so much more fun than a night in the ER.  In fact, back when Dylan was in the hospital, and very, very sick, I promised him that when it was all over, we'd all go to Disneyland.  It seemed pretty reasonable at the time.  In fact, at the time, I was just praying that we'd ever get to the point when it really would all be over, and we'd still have Dylan to go to Disneyland with.  

Unfortunately, thanks to these trips to the ER, cha-ching, and the medical bills that arrive daily in our mailbox daily, cha-ching,  I really don't see how we are going to keep my promise.  But he was so sick and in that moment of desperation, I would have promised him ANYTHING!  Man, I am so glad I didn't promise him a puppy!  

Of course, if I get too desperate, I might have to promise him a puppy not to pull his line out next Saturday night.  Whatever it takes, right?

Why Can't Anything Ever Just Work Out?

It all started Friday morning when I went to give Dylan his 8am infusion.  When I pushed the syringe to flush his line, saline squirted everywhere.  There was a leak in his line.  It was coming out where the connector and the tubing met.  I didn't give him his medicine, since I figured it would just leak out everywhere.  So I just clamped it off and called the home nurses.  They sent out a nurse right away, who confirmed that there was a problem, and got on the phone to try to find someone who could fix it, but first they had to know what size tubing was used so they could get the correct fix-it kit.  So she called the hospital to find out, but they wouldn't release the information because it is confidential (She was asking for a size of tubing, not a full release of medical history.  Geeze!).  So she had to go back to the office and fax in a signed request, then they had to locate the right size fix it kit, and then they had to locate the one nurse qualified to fix it.  I'm thinking it is basically changing the nozzle on a very small garden hose.  It really shouldn't be that complicated!  Meanwhile, hours pass, and the time comes and goes for his 11 o'clock dose.  Finally I call the nurse and say that I am just going to put tape on it too keep it from leaking, so I can give him his medicine.  She freaked out about that a bit, since it isn't sterile, but whatever.  The kid needs his meds, and he is taking so many strong antibiotics that any germ stuck to the tape wouldn't have a chance.  Besides, I used medical tape, not duct tape or anything.  The tape worked - no leaking.  We waited for the qualified nurse, who was found, but very busy.  Finally it is afternoon, and I am getting ready for my trip to Hollywood to see Phantom of the Opera.  The nurse calls back and says the one qualified nurse is too busy to come, and just to take Dylan to the ER to have them do it there.  I love the "JUST", like hopping over to Loma Linda is no big deal.  I told her the tape was working fine, but she insisted I take him right to the ER. If not, she could come fix it on Monday.  I was furious.  It wasn't like this was a sudden emergency.  I had called them at 8am, as soon as I knew it was a problem, and now it was after 3pm, and they couldn't get their act together to help us.  I was not about to miss Phantom, especially when the tape was working just fine.  So stressful.  I went on a tyraid.  Why can't anything ever just work out???

So I went to Phantom, and forget my frustrations for one glorious evening!  

Saturday morning the tape was still working, but my mom-guilt started working too.  "You should really take him to the ER", said the good mom voice.  "But the tape is working just fine.  It will last until Monday", said the dominant bad-mom voice. " But the nurse was really concerned," said the good-mom voice.  "If she was so concerned, she would have found a way to come over and get it fixed," argued the bad-mom voice.  You don't want to spend the whole Saturday driving to and from, and waiting in the ER .  Besides, you have righteous plans.  You are going to work on disaster preparedness all day, remember?"  

The argument in my head continued all day, and the two voices were about to get into a cat fight when Dylan made my mind up for me.  He had been at my mom's house, helping her paint the fence.  He was running around, and his medicine got caught on something and the whole PICC line pulled right out.  Lovely!  

So while my mom brought him home I packed a bag with stuff to do, water bottles, snacks, etc. - anything I could think of that I might need at an all-night ER stay.  After all, this wasn't a life or death thing, and he wouldn't be top priority.  I was in a foul, foul mood, muttering things like "Why can't anything ever just work out?  Why is everything ALWAYS such a stinkin' pain?  Doesn't the Lord know that I have a bit too much on my plate right now, and I really don't need to drive all the way to Loma Linda to sit in an emergency room all night.  Is it too much to ask to have something go right for once?"  Bad mom was acting as my mouth piece, and she was pretty noisy about it.  

So I grabbed my bag and my kid, and slammed the door on the way out.

When we started driving, I could see that poor Dylan felt really bad.  He said that it was because his arm stung from when he yanked his line out, but I could tell that he was really feeling bad and guilty, like it was all his fault, and that I was mad at him, which I really wasn't.  I never was.  I knew that line was bound to get yanked out as some point.  He is nine after all, and after being down for 3 months, I really didn't have the heart, or even the ability, to keep him down now that he was feeling better.  I wasn't mad at him, I was just really, really tired, and have a list a mile long of things I need to do that I just keep falling further, and further behind on.  Saturday was supposed to be the day to get a lot of things crossed off my list.  Now this.

I felt bad seeing Dylan so sad.  I pulled the car over, and explained to him that I was not mad at him, and at least we wouldn't have to worry about the leak anymore, etc.  Then I had him say a prayer.  He prayed that we would drive there quickly, that they would be able to help us quickly, that we'd drive home safely, and that we would have a nice time.  His sweet prayer softened my heart.  I determined to change my attitude right there, and sent bad-mom packing.  "Okee doke, Dyls, its a mommy/son date to the ER."  We turned up our CD of "Joseph and his...Dreamcoat" and sang at the top of our lungs all the way.  It was fun.

When we got there it was 6:45pm.  A Saturday night.  When we drove in the parking lot Dylan said, "That's weird.  It doesn't look like there are a lot of people."  He wasn't kidding.  There was only one person in the waiting room!  A few weeks ago, when Dennis took Dylan to that ER to get his line unblocked, there was standing room only, literally.  People were sitting on the floor and standing outside.  It had been a Friday night, about the same hour.  They had waited almost three hours, and were told it wold be another few hours before they would be seen, so they finally just left.  We signed in, and were just getting settled in the waiting room, when they called us back.  We didn't even wait 5 minutes.  Who would have thought?

We waited a little while in the exam room.  A doctor came and assessed what needed to be done, and left.  A short while later she came back in.  She said that the vascular access team, which does the PICC lines, didn't come on weekends.  They would probably have to give him a regular IV for the weekend, and we'd have to come back next week to have the PICC line put back in.

Oh, here we go again.  the bad-mom voice started to reemerge in my brain.  A regular IV?  You want to hook this kid up to a regular, drip bag, needle in arm IV?  How would we work that?  What a PAIN!  I could have driven to a local hospital to get a regular IV.  Doesn't anybody work on weekends anymore?  I have to come all the way BACK here next week (I already have a Dr. appointment here on Thursday!) And then came the familiar refrain, Why can't anything ever just work out???

I explained my concerns to the doctor and she said she would see shat she could do.  She returned a short while later and said that she had good news.  There happened to be someone from vascular access who was still on call for a few more hours, and before the doctor could leave the room, the cute little gall from VA was there already, like magic!

The procedure takes some time.  She has to measure and prepare, etc.  When she was ready to start, I stood to watch, and she told me that wasn't a good idea if I was squeamish about blood.  I assured seeing blood really didn't bother me.  When I told her I had six boys, she believed me.

Dylan was so brave.  He was awake the whole time, which was really, really good, because if we had to put him to sleep, we definitely wouldn't be able to get it done that night.  It would have been way to complicated.  She did a good job, and got it right the first try.  Just as she was finishing another guy from VA showed up to do it.  The doctor had said there was nobody from VA, and now we had two!  Then Dylan had to get some chest Xrays to make sure everything was in place just right.  It was.  Then, when Dylan was feeling better, they discharged us!  That was it.  With the procedure and everything we were in the ER only about 2 1/2 hours! 

Several doctors and nurses commented that our stars must have been aligned just right because "nothing ever works out this quickly!"  Their words struck me.  I suddenly remembered my bad-mom mantra -"why can't anything ever just work out?" and I was humbled. My stars weren't aligned, I just had the Lord on my side.  No, I didn't need a trip to Loma Linda on a Saturday night.  I would have much rather stayed home, but since I did have to go, the Lord knew that I was overloaded, and that I had had only 3 hours of sleep the night before, and was exhausted.  He knew that if I was going make the drive home, we couldn't be in an ER all night long.  That was why the Lord just made it all work out.  He knew my limit, took me right up to it, then he made the rest as easy as possible.  Oh, why to I have to be so ungrateful sometimes?  I was truly humbled, and grateful for a loving merciful God who made it all just work out.

We left the ER, and even had time to stop for dinner at El Pollo Loco - Dylan's choice.  It was fun.  It was mommy/son date night after all.  

We drove home and made it before midnight.  I sang Phantom at top volume all the way home to stay awake while Dylan slept.  Still, I felt myself slipping into a doze a few times at the end.  I am not a night person and I was exhausted.  I knew that if it had taken much longer than it did at the ER, I might not have made it home.  But Dylan's sweet prayer at the beginning of our excursion was answered completely.  We made it there quickly, got everything fixed quickly, made it home safely, and had a nice time too!  What a wonderful little boy!

I am so grateful for the Lord's hand in my life.  I will remember this next time I feel like nothing is working out.  Life isn't easy.  By definition it can't be.  But sometimes, just when we really need it, the Lord bestows his tender mercies on us so stuff just works out.  The Lord is always working it all out for us somehow, isn't he?

Exactly How Long is Half of Forever, Anyway?

We have reached the halfway point.  Dylan has been home from the hospital 6 weeks now, and that means we are through 6 weeks of his 12 week IV meds.  It sounds good to be halfway through, but looking back it seems like we have been doing this FOREVER!  So to be half way through with forever, means it still seems like we have forever to go before it is all over and done with.

I thought things would be easier by now.  In some wonderful ways they are.  Dylan is mobile and active again.  He is feeling better, and that alone is wonderful.  His new mobility comes with its own set of problems.  He now has to go to physical therapy.  Three days a week, and hour at a time, for 6 weeks.  It is all the way in Palm Desert, and tremendously complicates my already crazy schedule with a in-home teacher, in-home nurses, day-long trips to Loma Linda.  It would be crazy enough if I only had Dylan, but I have 5 other kids who have schedules of their own, and who still happen to need their mother.

And of course, along with the physical therapy comes pain. Dylan worked so hard at PT yesterday because he wants so badly to be back to normal again.  He used to be the fastest runner in his class, amazing at sparring in taekwando, a real high kicker.  But now he can't do any of that.  Yesterday he said, "I am tired of saying 'I used to be able to...' ."  So he has been working so hard.  Poor kid sat in the living room chair crying for hours last night because his long neglected muscles were aching so much.  It is necessary pain, but I hate to see him have to go through it!  

And, of course there still is the insane all-day, all-night IV med schedule.  I am so, so, so tired all the time.   It is relentless and never ending!  To make things worse, over the last 6 weeks his PICC line has gotten slower and slower, which makes my job harder and longer.  What used to take an hour, now takes two, and it is taking real muscle (something I am rapidly losing, since I have given up trying to fit exercise into my life) to push the syringes in.  It is really frustrating.  Before Christmas I told my doctor it was a problem, and she ordered some procedure to be done to help clear the line.  Apparently, the home nurses we use don't perform the procedure.  But nobody told me or the doctor that.  When we went to Loma Linda yesterday, the doctor was surprised that the procedure had not been done, and ordered another one. 

She also said that his SED rate, the inflammation rate they test in his blood, was not dropping as fast as she had hoped , and was dropping at a lower and lower rate each week.  This, apparently, is not a good thing and caused some concern to the doctor.  But as long as it doesn't increase, there isn't need to worry.   It just might take longer, which might mean more weeks of meds.

So after our appointment( which took hours, by the way) Dylan and I ran a few errands around there, and even went out to lunch, which was nice.  We finally got home in late afternoon, and my Mom asks how the procedure went.  What procedure?  Apparently, while we were still there, the doctor's office called here and said that Dylan needed to come to the ER there in Loma Linda to get the procedure done.  My mom told her to call my cell phone.  Sure enough there was a message on it telling me to go the the ER.  For some reason I never heard the phone ring, and was never given a missed alert message.  When I realized the I had been RIGHT THERE, and I could have easily taken him in to have it done and quite possibly have the nightmare solved, I BLEW a FUSE!  Not a happy scene.

Of course if I had had my bluetooth in my ear (see previous post), I'm pretty sure I would have gotten the message.

Now I have to find time to take him all the way back there to get it done.  Why can't things just work out?

So that is where we are at: halfway through forever.

I don't know if I can hang in there for another forever... or six weeks even.

Our Christmas Miracle

Just a week before Christmas, sweet Dylan was totally reliant on a wheelchair or a walker to get anywhere.  It was exactly one week before Christmas day, Dylan proudly showed the doctor that he could take  3 whole unassisted painful steps from the chair to the exam table.  We were so excited about that.  To me it was a miracle - but that was just the beginning, it turns out.  

That day the doctor, worried about bone and muscle loss and Dylan's increasingly twisted little body, decreed that the walker and wheelchair be done away with, and prescribed one crutch.  This really worried me.  Dylan was finally starting to get around pretty good with the walker, and so happy to be able to get up and about a bit.  His attempts to use crutches were painful and akward.  So the prescription on only one crutch seemed like a step back to immobility, and that would make him unhappy and me the bad guy. 

 I was right.  He hated the crutch... so he tossed it, literally.  

That was only one week before.

On Christmas Day Dylan could do this:

Progress had been so slow for so long, and then all of the sudden...  

Now the walker and crutchs are right where they should be - in the garage, never to be used again, hopefully.

Miracles really do happen, especially on Christmas!

Bringing Us Glad Tidings and Great Joy

On the night before Christmas Eve, Dylan and I were sitting on the sofa singing carols while the boys were doing the dishes.  The doorbell rang.  Someone answered it, and in filed about 20 carolers, all festively dressed in black and red.  They were all the youth from the Thermal Ward - one of the Spanish speaking units in our stake.  They smiled and asked if they could sing to Dylan. He was still on the sofa in the family room.  The sang a beautiful carol from the Spanish hymnal, all verses  It was absolutely lovely!  I recognized a few faces but didn't know any of their names.  Apparently, one sweet little girl who had been on the stake children's choir with Dylan and the other boys  (in the Santa hat), felt so sorry for Dylan and what he has been going through, that she arranged the whole thing.  She was clearly excited that her arrangements had finally come to fruition, since she was grinning and bouncing around the whole time.  

Then they sang Silent Night in Spanish, and invited us to sing along, in English of course.  The beautiful, unexpected music filled our home with such a sweet peace and spirit!  It was simply magical.  When they were done, they all wished us a Merry Christmas and wished Dylan to get well soon.  I hugged them all and thanked them so much for their lovely music as they filed out the door into the cool night air. 

 

When the door closed I burst into tears.

  

I was so amazed that these sweet young people, strangers, had gone to all the trouble of practicing, getting dressed up, arranging rides, and coming all they way over here to sing for a sick little boy and his family on the night before Christmas Eve.  It brought forward all my emotions - deep feelings of gratitude for all the service, well wishes, and love given to our family over the last two months, from loved ones as well as strangers, near and far.  It was all too much - too much love that I hardly know what to do with it all.  I realized that all these kind acts could never be repayed - only received with glad and thankful hearts.    And I am so grateful - grateful that Dylan is still with us - and thriving, grateful that our family is all together again, grateful for all those people who love us, and grateful that there is so much good in this world, grateful for Christmas, and for the salvation offered by the one whose birth we celebrate.

I bawled for a long time.

Funny how a few songs sung by a few young people can do all that.

Thank You Thermal youth!  And Merry Christmas!

Progress

I can't believe it has been more that 3 weeks down since Dylan has been home from the hospital, and six weeks since I brought him to the emergency room because he couldn't walk.  His progress has been slow.  Indeed, at the time it seemed like he really wasn't progressing , but now that I look back to how he was a month, or even 2 weeks ago, I can see progress after all.  Hurray!

On the other hand, these three weeks home have also felt like forever - like I can barely remember what normal life was like before.  I am getting somewhat used to the crazy medicine schedule, but it is taking it's toll on me and my brain function.  Ask anyone.  I have been so forgetful lately and slow to process anything.  The medicine schedule has changed slightly, because his picc line has slowed down quite a bit, and you can only give one IV at a time, so you have to wait for one to be done before you can administer the next.  So now I give him his medicine at 11pm, then set the alarm and go to bed.  Then I get up at 12:30am and give him his next medicine.  If the first medicine isn't done, I have to stay up and wait.  Then, after I give the medicine I go back to bed until 2am, when I get up to take off the medicine.  Again, if the meds aren't finished, I have to wait.  I don't dare go back to sleep, while I wait.  Then I set the alarm for 5am to give him his next IV, then try to catch a few more winks before getting up for good at 6:30.    I gave up the early morning swimming for now -  I just need that extra sleep. 

Just nine more weeks of this to go. 

Dennis has been wonderful in helping me, and often takes a shift or two.  But we have to figure out a system,because we I am not exactly sure when he is going to do it, so we  end up getting up and finding the other has already done it, or we assume the other will do it, and nobody does.  It kind of defeats the purpose if we are both waking up all night long. 

Speaking of the medicine, this is a picture of the huge box that Dylan's meds get delivered in about twice a week. They come with ice packs because they have to be refrigerated.    A four day supply of medicine literally takes up half of the refrigerator - the two big produce bins, and a whole shelf - just for medication!  Thank heaven we have that extra fridge out in the garage, otherwise I don't know what we'd do without fridge space - I guess eat out a lot.  

At least one perk to the whole thing is the bubble wrap the medicine comes in.  Don't you love Luke's droopy drawers as he does the pop pop dance?

The medicine also makes a ton of trash!  An empty trash can at night will be full by morning, and we have empty syringes all over the house - no needles though, thank goodness.  Can you imagine?  The empty saline syringes are a hot commodity around here.  The boys use them as water guns.  We go through at least a dozen a day, so there are plenty to be had, but they still fight over them.  I watch them fight over syringes and I think it is surreal.  Who would have thought a few months ago that syringes would be as common place around here as legos and action figures.

This week Dylan started getting his at-home teacher, finally.  What a hassle that was.  It took about a week after I applied for the service before someone got a hold of me.  She was a teacher at Dylan's school, a good thing, but being a teacher, she couldn't teach him until after school - 4ish!  I was stressed out by this news!  All along I had, for some crazy reason, assumed that the teacher would come during the day - since Dylan was sitting here, bored and lonely while everyone else is at school.     It had never occurred to me that the teacher would have to come during that nightmarish time between 3:30 and 6 - you know, when I am trying to help five kids with homework, make dinner, get them to practice piano and instruments, and drive kids off to taekwando, piano lessons, scouts, etc.  It is noisy and busy here, and we are in and out the whole time.  There wouldn't be a quiet place they could go to work for the required 5 hours a week.  I was so stressed out by the idea.  I called the district and begged for someone to come during the day.  They said it couldn't be done - it had something to do with the teachers union, and not working during contract hours, blah, blah, blah.  I was persistent, though, and insisted that someone come during the day, that it simply wouldn't work for anyone to have a teacher in the afternoon, and that  the education of my poor sick kid was more important that any stupid union rules.  Crying helped too.  They said they'd see what they could do.  Sure enough, a teacher called the next day who could come during that blessed time just after lunch when Caleb is a Kindergarten, Luke is sleeping, and the house is entirely quiet.  Wonderful!  She has come three time already, and it works out great.  I've learned that you have to make a stink with the school district to get what you need.  Fine with me.  I can raise quite a stink if I need to.

On Friday Dylan begged me to take him to his class for a quick visit before everyone left for winter break.  He was so nervous!  He was afraid his friends had forgotten him or something.  We showed us just minutes before school let out.  He rolled in to the classroom, and all the kids were so happy to see him.  It was so great!  They all rushed up to him, and were all asking him questions and  talking at once.  He felt like a rock star!  He was famous, and he wheelchair was considered very cool by everyone.  It was just a short visit, but it helped his spirits immensely to know he really hadn't been forgotten.    

Dylan also has a nurse who comes in every Wednesday to change the dressing on his picc line and take his blood.  They have always been very nice, but Dylan hates it, not so much for the blood draws, as the tearing off of the old tape.  Ouch.  Bless his heart.

So on Thursday I took Dylan up to Loma Linda for a few doctors appointments.  I was so happy to get hem both on the same day - one at 9:30 and one at 11am.  Well, the office called the day before saying that the Doctor for the 11 o'clock appointment wouldn't be there then, and I'd have to reschedule the appointment.  I told her that I had made the appointment 3 weeks before, and that I had made it in conjunction with another appointment because we lived far away.  She said that if I could check in by 10:30 am the doctor would have to see us, otherwise we would have to wait until after 1:15.  I told her we had another appointment in the same building at 9:30, but we would try to make it by 10:30.

Our first appointment was with the infectious disease doctor.  She is wonderful!  She walked in the door, took one look at Dylan and cheered!  She could see right away that he was improving, just by his coloring. I was amazed because to me, seeing him everyday, it doesn't seem like his is progressing much, but she hasn't seen him for two weeks, and to her the progress is remarkable.  She was so pleased, and told me that at our last visit she had been really worried - he still was having fevers then and his hip was still oozing - she had come very close to readmitting him to the hospital. I'm so glad she didn't.  But this time she was very happy.  She even gave Dylan an early Christmas present - she took him off his nasty oral medicine that he HATES! It is thick, gritty, and the color of Tabasco sauce.  I don't know what it tastes like.  I wasn't brave enough to try, but Dylan assures me Tabasco sauce would have been infinitely better.  He was ecstatic never to have to take that stuff again!   She made his day.  Unfortunately, he still has to do his IV meds, so that didn't do me any good.  Oh well.

So after that appointment we rushed upstairs (as quickly as you can rush with a kid with a walker) to sign in to his next appointment by 10:30.  We made it.  I was so relieved.  We waited a while, then they brought us to an exam room where we waited for another hour.  The nurse kept peeking in and assuring me that the doctor was in the next room and would see us as soon as he was done.  I had the sneaking suspicion that the doctor was gone, and they were trying to figure out how to deal with us.  Finally a resident doctor came in and said that we needed to get x-rays done.  So we went to another part of the building and got x-rays taken.  When we went back to the doctors office, we were told the doctor was out and to come back at 1:15.  It was 12:15 by now.  We weighed our options.  We had parked so far, and Dylan was so slow that we decided that there was not enough time to get out to the car, find a place to eat, and get back in an hour.  Dylan didn't want to walk that far.  So instead we went down to the basement cafeteria and found hot Cheetos and hot chocolate.  We made it back up to the doctors office at the appointed hour, and again waited in the exam room until almost 2:30.  That is 4 hours waiting!  The Doctor finally came in looking all spiffy.  Apparently he had been at a Christmas party.  He told me all about it.  The San Bernardino Museum had been rented out by the president of the hospital or something, and all the doctors and med students HAD to go to this super shindig.  Whatever.  He should have lied and told me had had to do emergency surgery or something.  So he is off making merry while Tiny Tim here and I are waiting around all day subsisting on meager rations of Cheetos and hot chocolate.  God bless us everyone.

This doctor was the orthopedist.  He was not as happy as the first doctor was.  While Dylan is recovering from his infection nicely, his bones are in bad shape.  His poor little body is all twisted and he can't straighten his hips.  They showed me the x-ray.  His hips were all lopsided, and that was as straight as the technician could get them.  The doctor showed me his right hip and leg, the healthy side, compared to the left.  Even with my untrained eye I could totally see the difference.  The bones on the right side were white and smooth looking - healthy strong bone.  The left hip and thigh bone, on the other hand,  were mottled and looked like they were made of sponge. Yikes.  Apparently, his bones are losing calcium from lack of use.  I was amazed at how fast that happens.  He has only been off his feet for 6 weeks.  The doctors prescription - lose the wheelchair and the walker.  All he gets is one crutch on his good side to force him to use the bad leg.  He is unhappy about this, and now I am the big meanie for making him get up and walk everywhere.  He doesn't like that stupid crutch because it hurts his arm, and he is so much slower now that he was with the walker.  He really does look like Tiny Tim now hobbling around with one crutch.  Poor kid.  That is progress for you.

On they way home we stopped at our old martial arts instructor's house for a visit.  Dylan was thrilled.  He has a big lush tropical garden, and Dylan really wanted to see it.  We hung out there and Dylan tried his hand at throwing ninja stars.  He got pretty good.  Mr. Muchenje even let Dylan drive his 4 wheel John Deer.  He said they would just drive around in the yard, but then they took off down the street and around the corner with Dylan at the wheel.  I was so glad to see them come back unharmed!  Dylan was THRILLED!  It really made the whole trip worthwhile.

We didn't get home until almost 7pm.  What a day.

One thing that happened on our trip to Loma Linda really got to me.  While we were in the waiting room in out eternal wait for the doctor, a young resident doctor who had been one of Dylan's doctors in the hospital recognized us and came to talk to us.   He was so happy to see Dylan in the improved state that he was in.  He said he had been there back when all the doctors where looking at Dylan's MRI and he said all the doctors were really shocked as they looked at it.  It looked so bad - there was just so much fluid and puss everywhere. And that was his second MRI, after he had already had surgery and been on strong antibiotics for a week.  He said all the doctors just looked at each other and were really worried. That is why he was so amazed and pleased to see Dylan doing so well now.  He was so nice and we had a nice chat while we waited.  You could tell he really cared.  He said "God bless you."  I thought, "He already has!"

But the whole conversation has really stuck in my head , and I keep picturing all those doctors looking at the MRI and being so scared and not knowing what to do for that kid.  It really had been as bad as I had worried it was, and the fact that Dylan is here and doing so well now really is proof that all the prayers and fasting have worked miracles!  Doctors are only human, and they can only do so much. They look at a nasty MRI, and can only do what they know how to do to fight an out-of-control infection.  The rest has to be left to the Lord.  Prayers and fasting work.  I have had so many people, even strangers come up to me and ask about my son, and tell me they had heard about him from somebody or another and have been praying for him.  I am always touched that people, strangers even, care so very much.  The prayers work!  The Lord led the doctors to know what to do to help him, and the progress he has made, however slow it seems to me, really has been a miracle.  I just had to see it through different eyes to really recognize the miracle for what it is.  Progress, for both of us.

                                                                                                

Pediatrician Please

I am in the market for a really good pediatrician, the kind of pediatrician that actually listens to the mom, the kind of pediatrician who actually reads medical journals and uses a computer, the kind of pediatrician who has heard of MRSA and doesn't dismiss everything as a spider bite.  Is that too much to ask for? 

 I need this doctor ASAP.

Any suggestions?

Home!

My sweet Dylan is home!  

After 18 days, two hospitals, an ambulance ride, two surgeries, two procedures, dozens of doctors, two MRIs, two eco-cardiograms, several ultrasounds and x-rays, 3 IVs, a picc-line, and a whole lot of blood tests - Dylan is finally home.  (This whole time Dennis has been saying "Man, I'm glad we've got good insurance!"  If you need better insurance, I know a guy.)

We are all back under the same roof, the roof of home, and I finally feel whole again.  Up until now I felt like I was being torn in two.  When I was with Dylan at the hospital, I missed my kids and worried about them, and when I was at home, I hated that I was not at Dylan's side.  And Dennis, well, we have just seen each other in passing for almost 3 weeks.  How I missed that man!  We needed each other so much during this crisis, but Dylan needed us more.  That's what it means to be a family, and that is why being back together again is so sweet.

Dylan is happy to be home too.  He is back, our same funny sweet Dylan, back at home, and back to being himself - laughing, chatting, threatening to beat up his twin brother as soon as he is able.  I can see how coming home really is the best medicine!

It has been a very long day trying to get that kid home.  I left at 8 am to go to Loma Linda.  We had to wait for this and wait for that.  Then we needed a last visit by the physical therapist, the occupational therapist, and a few doctors.  An at-home nurse came to teach us all about the picc-line and train us how to administer the IV antibiotics.  It was all really overwhelming for me. Then we had to wait on some paperwork, wait for a delivery of meds, and then fill another prescription, but that prescription was for pills, and Dylan can't swallow pills, so he had to have it compounded in liquid form, which take 90 minutes, but not until it was approved by the insurance company, which took an additional 90 minutes, and so on.  At 4pm we finally got out of the hospital and packed all the stuff into a small car, when I realized we were already a half hour late for his medication, so we had to unpack the car to get the meds and the instructions so we could give Dylan his IV, then get all packed in the car to go home.  It was pouring rain and the traffic was really backed up due to the holiday weekend.  We didn't get home until after 6.  My kids, my parents, and my sister, Mindy's family, all the way from Oregon, were here to welcome him home.  Dylan was the center of attention, and he loved it.

As glad as I am to have that kid home, the reality of what that will mean to the operations of our family are beginning to sink in, and I am feeling overwhelmed.  Dylan came home with a wheelchair, a walker, and crutches, so he is pretty much set with getting where he needs to go.  We also got 3 large boxes of IV meds, syringes, and other medical supplies I will need to use everyday, and a lot of instructions.  Whoa!  

Here is the breakdown.  This is life for the next 12 weeks, mind you.  (It is 12 weeks, because the infection is in his bone, and it is really tough to eradicate when it is in the bone.)

 Dylan has 3 antibiotics.  One is every 12 hours, one is every 8 hours, and one is every 6 hours.  They each take about an hour to administer, and only one can be administered at a time.  (Sounds like a math problem, doesn't it?) Each time, at the appointed hour, I have to wash my hands really good, put on gloves, sterilize the IV junction with an alcohol wipe for 30 seconds (that is a lot longer than you'd think) then you have to attach a syringe of saline and pump that in, then you have to attach the IV medicine, unclamp it, and let it do its thing.  After the hour, you have to unhook it, clean it with the alcohol again, flush it with another syringe of saline, and then another syringe of heparin, which keeps the line from clogging, and clamp it, then Dylan is good to go until the next IV is due.  It isn't too complicated and I'm sure I'll get the hang of it, but right now I am just a bit nervous about doing something wrong.

Here is his IV schedule: 5 am, 8am, 11am, 4pm ,5pm ,11pm, and 12 midnight. Plus oral medicine twice a day.   I'm thinking those 4 and 5 pm ones are going to be great - right in the middle of that crazy homework/prepare dinner/practice piano/taekwondo time.  Oh and the 11pm, midnight and 5 am are going to be fun too.  Remember that means I have to stay up until 11 to give the IV, and then midnight to do another one, and then wait up another hour, until 1am, to unhook it when it is done.  Then be back up at 5 to do it again, go swim fast so I can be back at 6am to unhook that one.  Got it?  I still don't.  Yes, I am a bit overwhelmed right now trying to figure out how I am going to fit this into our crazy family schedule for the next 12, that is twelve, as in a dozen, more weeks; that is 84 days; 3 full months; a quarter of a year; all winter long!

The great thing is that Dylan will be able to sleep right through all of it.  Not me.  I think it will be like when you have a newborn and you don't get adequate sleep for 3 months, and you look so... pretty and feel so... energized.  We moms try hard to forget that stuff, but its all coming back to me right now.

Right now it is 10:55 pm.  I am trying to prop my eyes open to wait for 11 so I can administer the IV.  I am exhausted.  I am NOT a night person.  Dennis is fast asleep on his own bed after sleeping in a chair for the last several nights, poor guy, and I am not about to wake him up to do it.  I'd really like to be in bed next to him for once, but alas, that will have to wait.

We also will have a home nurse come once a week to change the dressing and draw blood.  We need to get a physical therapist and a home studies teacher, and we will be making lots of trips back to Loma Linda for follow-ups.  

BUT, that is all infinitely better than him being in the hospital far from home.  He is happier, and is feeling better, and that makes me so much happier and feel so much better, myself.

The fear of the unknown, the excruciating pain, the loneliness and longing for home - those are all gone, swept away, when we stepped (or in Dylan's case, hobbled) through the door of our home.

Home is the miracle cure, the balm that soothes the wounded body and soul.  And for that we have so much to be thankful.

  

Pins and Needles

I left the Hospital Saturday night.  Not Dylan.  Dennis is with him now.  It was so hard to leave him.  But I knew he was feeling better, and in good hands, so that made it easier.  I came home and slept solid from 9pm to 8am, when Nate woke me up for church.  I could have slept longer.  I never sleep that much!

Sunday he was doing well.  We were all happy.

This morning the doctors said they were filing the paperwork to get him home Wednesday morning.  Yay!  This came as very, very good news.  I can't wait to have my baby home, both of them.  Wednesday can't come soon enough.

This evening Dylan had a pic-line put in, a semi-permanent IV.  He was able to have it done without anesthesia, which is good.  But Dennis was told that Dylan would need 12 weeks of IV antibiotics.  Wow!  First I was told 4 weeks, then 8 weeks, and now 12!  I spoke to Dylan.  He was good... and happy.

I just got off the phone with Dennis again.  He said Dylan has a fever of 101.  I guess Dylan had had one last night too - 100 degrees - that he hadn't told me about.  He didn't want to worry me.  I'm worried.  It isn't a high fever, but it is still a fever.

I hate that I am not there.

Now I am sitting on pins and needles waiting to hear what the doctors will say tomorrow.  Still praying, always praying that it will be good news.

I think I'll pack a bag - just in case.

Windows

A Window! A Window! My kingdom for a window!

I have been sitting in this room at my kid's side for over a week now, and it feels like I have been sitting in a cave, and noisy cave with a lot of beeping.

There is a window in this room, but it isn't on our side of the room. It is on the roommate's side. His name is Joseph and he is 14. He gets the window, and we get the door, which works our fine for him since he has been in isolation for two months and thus has no need for a door. Joseph always keeps his curtain closed, for privacy, obviously, so we can't even see the window. But that doesn't matter because Joseph always keeps the shades down on the window. Dylan and Joseph both like it dark for napping and watching movies. Thus the cave-like atmosphere.

I have a book light and spend most of my time reading in the cave. I can use the computer, when Dylan isn't using it to watch his DVDs. My escape is the hallway. There are always lights there, but no windows. I know the halls of the 5th floor well, as that is my only exercise, pacing the hallway, talking on my cell phone or waiting for the bathroom. There are no windows in the hallway, only doors. I can go through a whole day and not catch a glimpse of the blue sky. I don't know if it is dark or light outside. Time mushes together and means nothing.

I did see a window when Dylan was having his surgery and I was in the surgical waiting room. I saw a guy up on a cherry picker putting Christmas lights on tall palm trees. Whoa! I was just recovering from Halloween. Where the heck did fall go? This is a bad season to have several weeks sucked away. I am always stressed out at Christmas, but this one is really going to be a doozy.

We got to see a few windows the day after surgery too. Dylan was in great pain, you know how the day after surgery is always the worst. One doctor ordered for Dylan to get an ultrasound. They sent up a wheelchair to transport him down to radiology. Getting him to the wheelchair was horribly painful, screaming, the whole bit, and sitting up in a chair a day after hip surgery was no fun either. We wheeled down to radiology, we passed a few windows. I think it was day. Apparently they do have windows here, but on other floors, other wings. When we got to the ultrasound room he had to go from the wheelchair up to the bed. Dylan refused. Too painful to have to stand up, turn around then lie down flat. We might as well have asked him to walk through hot coals. We finally convinced him to do it. It was so hard to watch him in that kind of pain! He finally got up on the bed and the technician lifts up his gown to do the ultrasound only to find the his whole belly and left thigh are wrapped in an ace bandage. He can't do an ultrasound through a bandage, and won't remove it. The doctor who sent for the test was obviously not the surgeon and had no idea he was bandaged up like that. The technician could do nothing and sent him back to the room. In insisted on a gurney. No wheelchair. We had to wait for the gurney, then had our trip back past a few windows to the room, again. Someone mentioned the possibility of a doctor removing the wrapping so he could go get the test. I insisted he stay right on that gurney until they knew for sure one way or another. I was not going to let them make another painful move to his bed, just to have them have to move him back to the gurney for another trip downstairs. Finally it was decided that the test could wait a few days. Good. What a fruitless waste of time and unnecessary suffering. At least we got to see some windows.

So anyways, that was our other encounter with windows this week. Didn't really get to sit and gaze out of them.

So when people ask what I need, I say "Can you send me a window?" I really need a window.

We have one picture in this room. It is a big picture of a momma, daddy, and baby killer whales. It is a nice picture, but holds your attention for all of three seconds. I suppose we could put curtains on the picture and pretend we are underwater.

My friend Farai even drew me a window, but forgot to bring it to me. I appreciate the thought, though.

Other people on other rooms have windows. I envy them their windows. I envy Joseph his window too. Why doesn't he just open his window? Even indirect sunlight would be better than nothing.

One day when Joseph got a rare trip out of his room, I took a sneak peek out of his window. I pulled up the blinds and what I saw was not the rolling hills and tall cypress and palm trees I had seen out the window a few doors down on that first morning we arrived here. All that can be seen from Joseph's window is a white wall and some dark rectangular windows. It reminded me of a prison for some reason. No view. Just a wall. No wonder Joseph keeps his blinds down. This hospital, with all of its policies needs to make a simple policy that the isolation rooms must have the best views. This kid has been sitting in isolation for two months and all he has to look at out of his window is a wall. It is beyond cruel! I asked if they have a suggestion box somewhere because I have a few suggestions. They don't have one.

Joseph's view-less window made me sad. I felt bad for begrudging Joseph for keeping the shades down. I didn't understand his circumstance. It was also true in other ways. Joseph is noisy, rude, and belligerent. I was really put off by him at first, feeling sorry for ourselves that we had to share a room with that kid. But the longer I have been here, and talked to him, and looked out of his window, so to speak, I have changed my mind about him. He has not has a single visitor since we have been here, other than his tutor, physical therapist, nurses, doctors and the rest. When those guys come, he messes around with them and causes them grief. I see now that he is just trying to get some attention. He wants them to stay and hang out with him, not just run off to their next patient. His mom calls every couple of days, but it usually ends up with him hanging up on her. His dad is in jail for drugs. He is going home next week not to his home, but to a group home. His only love is football, but three surgeries on his knee mean no more football for Joseph. He had a blood clot and has to have shots in his stomach twice a day. That can't be fun either.

Now that I understand Joseph a bit, now that I have looked out of his window and seen the crummy view that he has to look at everyday, I don't envy him his window anymore. He doesn't bug me anymore. I like Joseph. I listen to him when he needs to talk through the curtain, and I tell him he is smart and good. The other day he had a math game he wanted to play with me. I humored him and he won. I am terrible at math, so that is no surprise. I told his how smart he was. I meant it. Then he challenged his nurses, and his PT guy, and anyone who would stop their busy day to play a few rounds with him. He won every time. That night I heard him tell his mom on the phone "There are some people here who think I have a brilliant mind... No, Mom, really."

His tutor gave him an assignment the other day to write an essay about something that happened in his life. It stressed him out because he couldn't think of anything positive in his life that he even wanted to remember or have someone else read about. He got frustrated and told her he wasn't doing it. She left. I talked to Joseph, and told him I bet he was a great writer, and that all the great writers had had bad things happen to them. It was those experiences that helped them be great writers. He told me he wasn't doing it. Period.

A few days later Joseph declared to me that he was going to surprise his tutor and do the essay- due tomorrow - even if it took all night. The assignment was a bit more complicated than simple an essay. It had to have so many paragraphs, each with so many sentences, each sentence having to have a set number of nouns, adjectives, prepositions, etc. It was a difficult assignment. He was up until very late working on it. He kept asking me through the curtain things like "Is 'ugly' an adjective?" He kept me up to date on his progress, and I kept telling him he was so good and the tutor would be so surprised. He was so excited the next morning to hand his paper into his tutor. It was very good. He got an A+. Joseph was happy. I was happy too. Poor Joseph. I wouldn't want his window.

I've been thinking about the other people in these other rooms. There are some seriously sick children here, children who have cancer or horrible disease or trauma, children with major birth defects, children who are here because they were abused by their parents, children who have nobody at their bedside, children who will never leave this hospital alive. How can I really envy them their windows?

Yes this whole experience was very scary and very painful to go through. But in a week or so we will be back in our home with the big windows. By the new year Dylan will be off his IV, back in school, and by next Thanksgiving this will all have been a very bad nightmare, nothing more.

That is the window I get to look through, and I am so grateful for it. So the view from this room, as far as I can tell, is perfect.

Down - Up - Down.

Dylan's temperature is down.

Doctors' hopes are up.

Dylan's spirits are down.

It has now been 48 hours that Dylan has been fever free! This is wonderful news. It means that the second surgery likely worked, and the antibiotics are kicking in. The doctors are all very pleased. I heard one doctor in the hallway literally give a cheer this morning when the nurse told her he hadn't had any fevers since the surgery. It is so refreshing to see smiles on the doctors faces where I only saw worry before. I can tell that these doctors really, really care about Dylan, and as his condition got worse, and the mystery deepened, they grew more and more concerned. I am getting completely different vibes from them now. Smiles, nodding heads, laughing - all are good signs from them to me,just as low temps and blood levels from Dylan are to them.

Unfortunately, Dylan's spirits are lower than ever. Even though his condition is getting better for the first time in 2 weeks, he is actually feeling worse. He was feeling much better before his 2nd surgery. His pain was less and he was getting up and around, wanting to do stuff and thinking he was going home soon. Then came the surgery surprise, and suddenly he his back in the throws of pain again, can't get around anymore, home seems further away than ever, and he is just depressed. I breaks Mom's heart. Before, with physical therapy, he was trying so hard, really pushing himself (like Dylan always does with everything) and getting better by leaps and bounds. The PTs were so impressed. But the second surgery took it all out of him, and he is starting all over again with his PT. But this time he has no motivation. It hurts a lot. He cries a lot. He doesn't want to try. He is sick of pain. He is sick of the hospital. He is more miserable than I've seen him yet. It is heartbreaking.

Yesterday he was trying to sculpt an animal out of clay. He got frustrated because he couldn't get two ears to match. He got mad and threw the clay on the floor. When I asked him what was wrong he started to cry and admitted that he figured out he was going to miss Thanksgiving. He was very upset. His roommate, who has been here for two months for a similar infection in his knee, was told he was leaving Tuesday, and would be home for Thanksgiving. Dylan had heard that and asked me when Thanksgiving was. I told him in one week. He had done the math and figured out that he might not make it home by then and was very upset. I told him that our Thanksgiving would wait for him. Poor kid.

Dylan is not in the clear yet. We still have to get back blood cultures for several days that are negative for staph, and more tests are needed to assure the doctors that none of the staph has started to grow on the heart valves. He has to be up and walking, and he has to have a procedure to have a pic-line, a sort of semi-permanent IV, put in before he can come home. Of course, if he gets any kind of fever again at all, all bets are off. Lets pray for no fever.

I am hoping that tomorrow, Dylan's pain will be down, and his spirits will be up. I pray that tomorrow will be a better day, and the day after that better still, and that on Thanksgiving Dylan will be thankful to be home.

This down, up, down, up, is taking its toll on all of us.

Seeing Yellow

I loathe yellow.

I haven't always hated yellow. I mean, I painted my kitchen yellow. I spent weeks trying to find the perfect warm, and cheery yellow for my kitchen. I thought I'd found it, spent all night, 9 months pregnant, up on a ladder, painting it. In the morning light it was was no longer warm and cheery. Instead it was an unnerving and harsh chartreuse. I cried (hormones). It was Sunday, and I wouldn't be able to get to the store to pick out another paint and repaint it until Monday, and I was already over-due and I knew I couldn't let my kitchen stay this color if I had to run off and have a baby. Luckily, Caleb was late, and I got to paint my kitchen the perfect shade of yellow. And if I can remember right, I love my kitchen. (Its been a while since I've seen it.)

What I'm saying is that my hating yellow is a recent development, over the last few weeks actually.

Yellow is NOT a sunny and cheery color. Yellow is a dreary, dark color.

Dylan is in isolation. When you are in isolation, everyone who comes into your room has to don a yellow gown. I have been wearing a yellow gown for almost two weeks now. It is NOT my color. Everyone I have seen, except Dylan, has been wearing yellow. Let me just tell you, yellow is nobody's color. Nobody looks good in yellow, especially under these harsh hospital lights.

Isolation stinks.

Dylan cannot leave our dark and tiny hospital room. There is a bright and cheery playroom just down the hall full of games, toys, video games, books, crafts, you name it. Dylan can't go there. He is banned from the play room, and they will not bring him anything from the playroom to play with because he has the cooties.

If he ever does get to leave our room, because of an exciting adventure to get an ultrasound, an MRI, or have surgery, they have to put a yellow gown on him to roll him down the hall. The yellow gown says "Look at me. I have cooties." Like a leper of old, having to wear a bell to warn innocent bystanders to run for the hills because there is a filthy leper in their midst.

Never mind that Dylan has been carrying this infection in his blood for over a year and hasn't infected anyone. Never mind that 2 out of every 10 people have this nasty bug just hanging out in their noses or on their bodies at any given time. Never mind that this nasty bug is everywhere - shopping carts, doorknobs, swing sets. Never mind that it has to be spread through the blood and someone can't catch it by being breathed on, coughed on, etc. Everything that Dylan's infectious disease doctors tell us about this bug, really doesn't confirm the "precautions" they are making. Don't get me wrong. I think they need to take precautions, of course, to not spread the disease, but there are so many holes. They are ridiculously precautious in some ways, and not in more obvious ways. And in the end, they just make it extra hard on the poor kids who are in isolation.

Do you remember ever being accused of having cooties in school. I do and it was no fun. Humiliating. Embarrassing.

That how this yellow gown feels, like being branded with a scarlet letter.

Isolation feels like solitary confinement, and try as I might I really can't think of the crime that sweet little kid of mine committed.

Before his second surgery he was trying to do his physical therapy in the confines of his room with his walker. He had to make about twenty laps back and forth in the tiny track between his bed and the door. Why the heck couldn't he just walk down the hall? Do you really think he was going to infect someone just schuffling down the hall? He quit after 20 mini-laps in his bedroom, I believe, out of sheer boredom. I'm sure it would have been much more motivating to have him make it to the end of the hallway.

Cootie case in point: Last night he had had a long nap and had missed dinner. It was about 10pm when he woke up and was hungry. His taquitos were cold on his dinner tray, and taquitos are just not good cold, agreed? So I carried the covered plate out of the room and asked someone to throw the taquitos into the microwave for a minute. They all looked at me like I, well, like I had cooties. "No, we can't." I knew they had a microwave, and were happy, usually, to reheat things for patients - unless you were wearing yellow. "Nothing comes out of the isolation room." That is the policy. They couldn't reheat Dylan's dinner because it had been in an isolation room. What? Dylan had never touched the food, the plate, or the entire tray, but suddenly it had cooties. I explained this to them. Again with the policy, "Nothing comes out of the isolation room." Strange, because I came out of the isolation room, and so do all the finished food trays, I assume, because I didn't see them piling up in the corner. I have seen a lot of stuff leave the isolation room, cooties or no. But they refused to reheat the cootified taquitos in the community microwave. "OK, then can you please just order him some more taquitos?" "No, the kitchen is closed." I was ready to blow. It doesn't take a lot these days. When my sick kid finally wants to eat some taquitos, I feel obligated to get him what he wants. To heck with the cooties! I begged and pleaded his case. They refused and generously offered to toss some jello into the cootie room. I stormed back into the cootie room and slammed the cootie door! That's why I hate yellow. He who wears yellow is treated as a second class citizen.

But I have watched my child battle these cooties. I have seen the pure torture he has been put through. He has been so brave and so strong. I don't think someone wearing yellow should be treated like they are wearing a scarlet letter, but a red badge of courage. Kids like Dylan, and parents like myself, have been through heck, and anyone in yellow should be treated with extra love and attention, not like they have cooties. Hot taquitos for all!

I'll be happy to never wear yellow again.

MRSA Strikes Back

Another hard day.

Dylan had surgery this afternoon, to clean out the infection in his hip. Again.

I'm too tired and emotionally drained to say much tonight.

They gave Dylan a ton of morphine for his pain. My friends and family gave me a ton of prayers and well wishes for mine. Thank You!

A Good Day

It is funny what constitutes a good day. A day at, say, Disneyland should be a good day, right?, but it could also be a very bad day. Think about it. You could encounter long lines, you could have a sinus trouble that makes any fast rides torturous, your toddler could run off into the crowds on Main Street and be found in Frontierland, your kid could be caught shoplifting and carted off to Disney Jail, Space Mountain could break down while you are strapped in and you could hang there in the dark for hours. There are really so many ways that the day you looked forward to at the "happiest place on Earth"could turn into a bad, bad day. Just use your imagination. It works vice-versa too.

Today was to be a bad day. A sick, hungry, kid in pain, a hospital room, isolation, far from family and friends, scheduled surgery. All the makings of a really crappy day, as far as days go. I woke up this morning expecting the worst. I didn't get it.

Last night when the Dr. said Dylan was to have surgery today I was so disheartened, and even more so this morning after talking to another doctor, as I wrote about in my last post. But when Dylan finally woke up this morning he was feeling pretty good. Not great, but good. And very hungry and thirsty, of course. I told him about the day's itinerary, namely another surgery. He didn't say anything, but his face fell. I asked him how he felt about that. He whispered "A little mad...and sad." My sentiments exactly.

We watched a few movies together and waited for the word to transfer down to the OR. Lunchtime came and went. No lunch, and no word form the OR. The physical therapist came. I told him Dylan was having surgery today. But the PT just thought that was all the more reason to get him up and moving before he wouldn't be able to anymore. Dylan did great. The PT was so pleased, amazed at the vast improvement from just yesterday. He was getting around with that walker like it was nothing. He did at least a dozen laps of the space we carved out for him in the small hospital room. While the PT was so pleased, he was also worried that any gains Dylan was making now would be lost after the surgery, and that was discouraging.

But just as the PT was finishing up, the nurse walked in with a tray of food. "Good news," she said, "no surgery today!" Wow. That was certainly unexpected. I never spoke with the doctor and am not sure exactly why not. All the nurse said was that he wanted to wait and see. Maybe he got back some results that were encouraging. Maybe he consulted with doctors and they came to another conclusion. Maybe the OR was booked. I am not sure. And I am not sure if he will have the surgery tomorrow, or the next day, or never. But Dylan was eating, so it wouldn't be today. I could live with that.

Dylan enjoyed his lunch - devoured it actually. That was good to see.

Then he sat up in a chair and was anxious to DO something. This was good too. Now he can sit up because his hip feels much better, and he can use his hands because his new IV is in the middle of his forearm, which allows him more movement. He spent a long time painting a wooden snake black and red, and then a clay turtle bank green and red. I was so happy to watch him enjoying himself, DOing something.

Then he got to take his first shower in a week and a half. After the nurse taped plastic all over his IV and incision, he was able to get unhooked from every cord and tube (a good, good thing) and get into a shower. Dylan is kind of a neat freak, so a shower and clean hair must have been really good. (His brother Derek would have loved the excuse to not take a shower for a week and a half. Maybe Derek hasn't showered since then either..., you know, in solidarity.) He smells so good again.

Then we watched Napolean Dynamite together and laughed. Laughing is good too.

Today many people called, emailed, left sweet and funny comments on my blog, and a brother in our ward, who commutes near here, even stopped by, on orders of his wife. So much love and support is so very good.

So there it is. An unexpectedly good day. We are still in a hospital, alone, far from home, my kid is still inexplicably sick and in pain, and we don't know when we will get home. But there was no surgery, for whatever reason, quite possibly a good one. A full stomach, clean hair, a jaunt around the hospital room, an artistic endeavor, a funny movie. These are all the makings of a good day. Who would have thought? I guess it really is all relative.

A good day. I'll take it. I promised in my last post that I won't get ahead of myself again and start getting my hopes up. This crazy trip has taught me that we never know what tomorrow will bring. Tomorrow may bring surgery, or an all clear from the docs. Who knows? Today was no day at Disneyland, but that may be a good thing, right? Today was a good day, and I'll take one good day at a time.

The nurse just took Dylan's temperature and it is spiking again. Perhaps today was only a reprieve after all. Here's hoping for a good night. We'll worry about tomorrow come morning.

Here We Go Again

OK, this is NOT the post I had planned on writing!

So I wrote that last post early Sunday morning, after a fitful sleep. I went to sleep without hearing from Dennis, but figured no news was good news, and that if there were a problem he would have called. Still, I was distracted and jumpy at church with worry, and kept stepping outside to try to call him, but he never answered. We got to church early (Hm... wonder why that always happens when Dennis is not with us?) so my dad could tie the boy's ties. I have never learned how. Tying ties is not really my thing.

It felt so good to be at church, among so many people who love me and my family, especially after my lonely stint at Loma Linda. It felt good to talk to my friends face to face, and see the looks of genuine concern in their eyes.

The primary program was wonderful, by the way! Everyone did such a great job, and the spirit was very strong! I especially liked how Caleb was dancing around up there, waving his arms to mimic the conductor. When I caught his eye and motioned for him to stand still, he stood at stiff attention. But that only lasted for a few seconds before his head started bopping back and forth, and soon his body followed and he was dancing around again. I guess he was really feeling the spirit... or something.

All reports have been that my children have been wonderful during this whole experience - Alex has been extremely responsible, the other boys so sweet. So I don't know what it is, but from the moment I was with them again, they started fighting like cats and dogs, calling each other names, tormenting each other is the harshest ways. The two little ones have been making trouble too, getting into stuff, being destructive for pleasure. I guess I just imagined coming home and having my family around me, and all my children would be knit together in love, united in a cause during this family crisis. Oh please. I suppose they are stressed out and as helpless feeling as I am, and that is the only way they know how to express it. I guess I should be grateful that they are saving it all for me, and not taking it out on my mom and all the people who are being so helpful with rides and such. But still, in moments of sorrow, the last thing I need or want to do is hear my dear children slinging vicious names at my other dear children. It takes so much out of me to jump into the fray and tear kids apart.

So that might explain Caleb's antics up there during the program. But hopefully many of the congregation didn't notice Caleb's antics because they were too distracted by the completely out-of-control 2 year old causing havoc on the back pew of the Chapel (mine too). Fun.


I never made it to Sunday school, as there were so many friends asking how Dylan was doing and how I was doing. I could tell them about Dylan, but had a hard time telling them how I was doing. I also had no answers for what they could do for Dylan or our family. But I was grateful for all the offers.


During Yong Womens, Alysa, the primary president - and my rock - stepped in and handed me a huge stack of papers. I started looking though them. They were sweet letters and pictures from every child in the primary for Dylan. They were precious, and my tears started streaming down my face. I could hear the YW leaders sitting behind me were having similar reactions. I had to stop looking before I ruined all those pretty pictures with my tears.

I had to rush out of YW to watch Derek give his talk that he wrote all by himself about how Heavenly Father loves all his children. He did a great job.

Back at home, I finally heard from Dennis. Dylan was in a procedure when he called. They had put him under, and with the help of an ultrasound, were using a long needle to extract infectious fluid from an abscess deep in the muscle his pelvic area, where the antibiotics were not able to penetrate. Oh man. Dennis said he had had a long night staying up with Dylan while he suffered in pain.

At home, any hopes for a nap quickly evaporated as I tried to get everything I needed to get done in my one day home before going back to the hospital for who knows how long. Of course, a fabulous dinner was brought over by Kathy and Diane, much more food than we could eat. Dennis wasn't there, thus the leftovers. But it was really good, and we took the time to sit outside in the beautiful fall evening and enjoy it. I am so glad we did. For dessert they had brought a huge pan of the most wonderful something - chex cereal with melted chocolate and caramel, AND just to be on the safe side, and batch of chocolate chip cookies.

The doorbell rang. It was the Jacksons with not one, not two, but three plates full of humongous cinnamon rolls. If you've ever had one of Melissa's cinnamon rolls, you know that they are the ultimate comfort food! Simply amazing!

The doorbell rang again. The Stevens brought over a bag of gigantic soft oatmeal cookies - my favorite! I'd be bring the whole bag with me to go see Dylan.

Ding - dong. Evan Carlyle was at the door with a plate of beautiful butterscotch brownies (say that five time fast). They were snatched off the plate in no time at all.

We already had a huge untouched chocolate cake on the counter, and a couple boxes of Moose Munch Crunch from Harry & David (one of those is going to the hospital with me too!)

Is that where they get the term "Living the sweet life?" If sugar = love, then we are very, very loved!

By the way, I understand that calories don't count in a crisis situation. Good to know!

Sunday evening Dennis' report was good. Dylan was doing much better, eating and sitting up. His temperature was down. Yay! I spoke to Dylan, and he asked me to bring all his stuff people have been giving him that up until now he had not felt like playing with. He asked for some specific action figures and toys. That was a very good sign. I dutifully packed up all his requests, the primary letters, the cookies and junk, the giant red card his brothers had made that says "GET WEEL SOON!" in big letters on front, and the various pictures Caleb had drawn and carefully cut out. Caleb also picked several roses from the garden. They were past their prime, and the stems were cut to about 2 inches. He put them in a plastic cup, and wrote "DYLANCALEB" on the cup. He carried them around all evening, and the next morning saying "Don't forget to give these to Dylan." Sweet boy. He really misses his brother.

Monday morning I headed out to Loma Linda and found Dylan sitting up in bed, cheerful and perky. He had no fever and was talking up a storm, wanted to eat, wanted to know what was going on at home. He was Dylan! I hadn't seen that Dylan for over a week! The physical therapist came in and got Dylan up and in a walker. Because he is is isolation, he can't leave the room, but he did several laps back and forth in the cramped quarters of the hospital room. He was trying so hard, and was doing such a great job!

Finally! After more than a week he had finally turned a corner. The antibiotics were working and he was up and moving. This is what everyone had been praying and waiting for. I was so relieved, because I really didn't know how much more of this I was going to be able to take! There was talk of him getting home by the end of the week. Hallelujah!

Dylan and I had a great time together. I showed him his flowers from Caleb, his giant card and picture from his brothers. He ate most of his cinnamon roll. We carefully read all the letters from the primary together, and laughed. He loved them! They really made his happy. All the nurses said, "Wow! Who sent you all those letters?" Dylan said, "my friends from church." "You sure have a lot of friends." "I know." I told him he lucked out because it was the primary program so everybody was at primary. More kids mean more letters. They were really great!

We watched movies and hung out, and I thought how great it was going to be from here on out. Now that Dylan was feeling better, I was looking forward to these next few days where I could spend a lot of alone time with just him. He is such a great little kid, and I love to be with him.

After lunch he was tired and he slept all afternoon. I noticed that his temperature started to go up, but I wasn't too surprised. He is still sick after all.

My good friend Kristi came in the evening and brought me dinner, even though she was leaving for Hawaii with her family in the morning and had so much to do still to pack. It was so nice of her to come, knowing she'd be up all night packing. She brought me In-N-Out, bless her soul! We had a great visit. I just love that girl! We've been friends since we each had one kid. Now we have 11 between us, and she has always been a great resource of wisdom and strength for me through the years.

So here is the part where this post about how everything is getting better goes awry.


I walk Kristi out of the room and say my good-byes. As she walks away, a doctor comes up to me and asks me to sit down. He has forms. He tells me that the MRI results from Friday night, along with other tests and the recurrent fevers have made the doctors decide that Dylan needs another surgery.

Numb.


Your kidding me.

He explains the the infection that was in his hip had crept over the hip bone and settled in the back of his pelvis. They worry that if they don't catch it now it will creep up his back, which is already inflamed...

There was more, but my mind was still stuck on the word "surgery." Again.

That poor, poor kid! Just when he was finally up and moving about - it's taken a full week to get him to that point. Now we will be starting all over again. I think we'll be stuck here for a while.

I should have never got my hopes up and started assuming things. You'd think I would have learned that lesson by now.

I haven't had the heart to tell him about the surgery yet. His spirits are pretty thrashed at this point already. Mine are in pieces.

He had a rough time last night. More fever and severe pain. His IV blew, and had to have another one put in - his third so far. He is so brave! He has been given another order for no food or water. He was thirsty and I had to tell him no.

I held his little warm hand all night. It was all I could do for him.

It is morning, and he is still sleeping. Another doctor came in and "explained" a lot of stuff about blood cultures, a bone infection, bone scraping, low hemoglobin levels, a blood transfusion, heart mummers, a possible infection of the heart valves. Just trivial stuff, you know, idle chat.

We're looking at another fun day.

It is strange because I haven't cried yet. I frankly don't know what to feel. I might still be angry. Ya, OK, I am angry. This should never have happened! Maybe I am sad. Of course I am sad. Who could watch a little kid suffer and not be sad. Yet I don't cry. Maybe I am just tired. I am tired of crying, tired of worrying, tired of waiting. I'm just tired. Too tired to cry.

But don't worry. I'm sure the tears will come. They always do.

I do know that a whole lot of wonderful people have been praying for my boy. I know that many dear friends and loved ones have been fasting Sunday or Monday, and I realize that the Doctor's decision came Monday evening. I don't think that is a coincidence. It is was the praying and fasting that helped the doctors know the proper course to take, and that surgery is that course. This is what needs to be done, and I believe it will work.

Maybe I don't cry because of hope. Maybe I don't cry because of faith. Maybe I don't cry because the spirit has somehow reached into inside my frazzled mind and broken heart to tell me everything will be OK.

I'll take it.