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.