Thursday, September 12, 2013

Not the Worst

After our clinic appointment on Sep. 3, it was decided that we would go to see our GI doc, check in with him.  Well I expected that to take awhile but they got us right in.  I explained that we were seeing a bit of increase of diarrhea.  Nothing crazy but here and there throughout the summer.  So after collecting a "lab sample" which Gary can give on demand, turning it in to eliminate viruses and bacteria's that could cause, the doctor decided he wanted to do a repeat scope of both ends.  Again, I thought ok, I agree we can't be to careful with Gary.  I definitely didn't was make him go through that if it wasn't necessary.

I expected that to take awhile to get in.  But nope.  They got us on the schedule immediately.  We even had to stick around on Monday the whole day to hit a pre-op appointment.  That meant Gary was to immediately alter his diet for the bowel prep.  We had a light breakfast that morning.  Gary was already talking about lunch.

The nurse said to run out, get lunch, then start.  We had to avoid certain foods like fruits, vegetables, nuts, seeds, red dye.  So that wasn't terribly hard.   I decided since Gary had to go through it I would do.  All except the laxative part.  The next day Gary could only have clear liquid, jello, and Popsicles and 8 glasses of water with 3 doses of Miralax four hours apart.   Since I wasn't going to do the laxative part I completely fasted and did water only.  After 7pm the night before Gary could only have water.  By 8am the morning of, nothing by mouth.   He truly handled it like a champ.  It got a little rough in the morning.  We had several conversations about why he couldn't have anything.  He kept forgetting.   Our appointment was at 12:15.  We arrived at the hospital by 12:00.  At this point, Gary's body was starting to respond to his fast and clean out.  He became extremely lethargic.  He was getting the hot and cold sweats.  He basically could not stay awake.  He passed out in the hospital waiting room.  It was about 45 minutes past our time they said to be there so I went and asked.  He was sleeping on the floor at this point.  I felt his pain but I didn't do the laxative so at most I was spacey with trouble focusing.

I approached the desk to ask where we were at in line.  I asked how much longer it would be.   I informed them that he was passed out on the floor.  They said it would be soon.  I asked for a warm blanket to keep him covered.  At 1: 30 they came out to bring us back to the room prep.  We wheeled him back in the wheel chair.  He was even having trouble holding his head up and keeping his eyes open.   I was thankful he slept but it was hard seeing him in that state.  We got him in his gown.  Finally got his port accessed.   And at 3 o'clock,  he went to back.

I was able to go all the back with him.  They let me help with the gas.  He was so lethargic that he did not fuss once bit.  Very little anxiety.  He didn't have anything to give.  His eyes were glassy.  He could barely respond.  I was concerned but he did answer questions, and even gave a half smile to a nurse.  I was so happy that got on with it.

The results weren't perfect, but they were better from his last scope last year.  I think it has been even more than a year?  His colon did have signs of ulceration's, but I think those were the old ones.  The only other thing was 2 parts of his stomach were irritated.  His esophagus looked fine but further down the tummy right before the small intestine, there was inflammation.  There was no ulceration's just irritation with a little blood.

Yes, I wanted him to come out and say, "everything looks normal".  But with what he saw, the doctor is almost certain he would like to run the medicine we gave him last year, Remicade.  He told us that he would wait for the biopsies to come back but he was pretty sure he leaning towards that.  I told him that a discussion with rheumatology will definitely need to happen as I had talked with them about we were worry that the Remicade worked really great on his IBD or Crohn's, or whatever they want to call it, but not so great on the JDM.  We can't be sure it was the Remicade that suddenly had him limping and having trouble swallowing.  I would hate to go on, well lets try it and see.  That is hard.  I am very curious to see what rheumatology has to say about it.  I was clear with one thing.  I do not want an increase in steroids.  I mean if it was a life saving thing then of course.

Right now we are pretty tired.  We still have a MRE to go in the next couple weeks.  Tomorrow we have an all day infusion.  This was a bumped infusion from Wednesday because of the scopes.  They originally wanted to do it today (Thursday).  We did not get home until after 8 last night.  He was exhausted.  He slept so much in recovery.  He woke up crying and needing to go to the bathroom.  The first thing I had waiting for him was a chocolate starbucks frappacino thing (no coffee in it of course).  I started to let him drink it when the transport nurse stopped me and said, "he is going to throw that up with the anesthesia in him!".  I apologized but was like so be it.  I told this child he had to make it  to 12:15.  You guys took it all the way to 3 o'clock.  But that was my inner dialogue.  I fully recognize they don't have control over everything.  Besides Gary did at least sleep. I kept giving sips of his drink when they weren't looking.  It is my child, my vomit, I can clean it if I want too. I just knew that he wouldn't barf it up.  He didn't either.   If he did, at least it would taste good.

I am so impressed with my son.  He is starting to handle things a little better.  It makes it a little less challenging dealing with a that 2 to 5 year old when all he did was cry and behave badly in response to what was happening to him.  Now I think he understands a little bit better.  I wish he didn't have to but he does. I can be sad for that but no use in getting angry by it from a mother stand point.  That just doesn't do any good.  You do what do.

Wow.  On top of that we have been dealing with calcium deposits.  He has a deposit on his elbow and another in his bottom that have made there way to surface of his skin.  The one on his elbow grew to the size of a larger marble.  After a hot shower it burst.  I know it sounds gross.  I am just completely fascinated by it.  The one in his bottom is quite tender.  But the one on his elbow doesn't seem to bother him like that. Once it released a little bit, it seems to fill back up.  So now every time he take a bath or shower, it releases calcium.  Gary helps it along by gently pushing on it.  I will stop right there with the details.  The one thing that is important to me that no one in this family is allowed to say is, "gross".  I do not want him to feel embarrassed or ashamed by this.  I encourage everyone to maybe raise an eyebrow or say "wow"!, but it is just so important to me that no one acts as if it the most disgusting thing they have ever seen.  I don't care if you do.  Don't show it.  I'm sure he knows it yucky.  The tender deposit on his bottom might need some sort of wound care eventually.  The open wounds do concern me but they seem to seal off with calcium when it dries up.

Thank you so much to my baby sister who came with us.  It makes such a difference.  He loves his Aunties to pieces.  It was a big sacrifice for her because she hasn't been feeling good.   Don't worry, you can't catch what she has : )

This morning he sleeps.

My husband was suppose to fast with Gary and I.  I understood the other kids not doing it with being in school and everything but.....we agreed we would wait until Gary was done.  I estimated it would be about 3pm. So I told him at 3pm he could eat.   He made it to 11:45.  Good thing he was at work.  I understand you have to be at work, but if your not gonna be with him, then at least starve to death, LOL   :)  It was less than 24 hours for Dad.

Wednesday, September 4, 2013

Summer to Fall

I think this might be the longest stretch I have gone without posting an entry.  We left off in June.  I suppose I will just dive right in.

So we did a little taper at the beginning of summer.  It started with his home does.  We went from 10mgs to 8mgs.  That was successful.  Very small move.  The next change we made was the IVIG and Methopred dose.   He was getting 350mgs of methoprednisone once a week.  IVIG and Orencia once a month.  I wanted to try splitting the dose to IVIG up.  My reasoning was his skin became so clear after those monthly infusions but didn't last long.  So our doctors consulted with the experts and they agreed it couldn't hurt.  That is when we went ahead and implemented the second taper.  We did not go down in dose but rather spaced out the steroid to every two weeks.   That was in July and August.  Our September appointment was yesterday.  Gary is doing well but not well enough to keep tapering.  We had a few labs tick up twice.  Not jump up, just slight tick up a few points.  His AST and ALT are a low high.  I really wanted to hear lets keep tapering.   There are smalls signs of inflammation.  Calcium deposits have been making there exits.  Our doctor says she would be more comfortable if they were just gone first, then taper steroids.  But we have to try.  1 year and 2 months of once a week methopred pulses is enough.  But if we get to aggressive with our taper, that could lead us back to a place we don't want to be.   A place we are heading?  His cuticles look great.  His skin is ok.

Two years ago when we tapered all the way down to 1mg of prednisone with no weekly pulses, it ended in disaster.   The onset of this diarrhea.  Nothing that was alarming but just enough that we ended up with one little sick boy.  A boy who wasn't absorbing medications.  And now, it is slowly making its return.  I am thrilled with how well Gary does with what he has.  I am being pulled into the great darkness of worry again. At the beginning of summer I was feeling hopeful and empowered.  I told them to be careful with me.  I am in this game with myself of were tuff, we can take it.  Let Gary's body figure this out on his own.  I want to see him normalize.   Feels like my rug was pulled out from underneath me yesterday.  I am standing backup however.  We will get this figured out.  We have a repeat stool  test and see the GI doctor on Monday.

Today was the first day of first grade.  I made it all the way out to the parking lot before I boo hoo'd!  Yay me.  Drove to school at lunch to check on him.  Put more sunblock on him.  Everything was going great which made me feel better.  Cookies and fresh  bread are baking.