Friday, September 21, 2012


I think I am officially burnt out.  I am burnt out on all of it.  Funny thing is, this is something you can't take a vacation from.  I feel so drained but want to scream.  I am so glad to me done with monthly infusions until next month.  We are still heading back once a week for methopred infusions.

Wednesday we had our clinic visit and admission for infusion.  We were just there last week and the week before.  And the week before that.  So little to no changes to report except for one.  Limping.

Our main rheumatologist came in but it was fast and brief.  She said it was because something was tight.  Could be.  But confuses me the most is last time this happened, or when it happens, it has been labeled hip weakness.  So you can see why it that can be a bit tormenting.  It torments me because if I think it is weakness then what am I suppose to do about it?  Ok fine.  Something is tight.  He will be getting back to physical therapy twice a week then.  He obviously can't go without it.  We stopped it because of school and infusions and appointments.  It was hard to fit it in.  Our physical therapist agreed that we should let him get use to school.  But with the elbow, extended stay at the hospital, coming back week after week he, he hasn't even had a chance to do that.

On Friday the rheumatologist called and said they wanted to start him on bactrum.  I was in the car driving to the hospital for a dental check.  I heard her say 4 times a day.  I asked her to call it in to the pharmacy so I could pick it up after is dentist appointment.  We would have had to wait 2 hours for it.  I have spent so much time there lately I was not up for it.  I knew I had some bactrum from something awhile back.  I did!  So Monday and Tuesday I put it on his elbow wounds 4 times a day.  I stopped by pharmacy to pick up the fresh tube on our way to being admitted which was on the same floor.  As the pharmacist brought the prescription  from the back I gasped.  I asked her what is that?!  I asked if she had the right patient.  It was an antibiotic.  Apparently they wanted him not on a cream but an oral antibiotic. An anti viralish sort of medication.  With the extreme immune suppression he is on, a safeguard of sorts.  Ummm.  Oooppsss?

So why the F's.  F sounds for frustration.  I truly feel sick from the amount of frustration I feel.  Whether I caused it or the hospital or whatever.  This admission for cytoxan, and IVIG, went.  In clinic it was just basically an overview.  What came from it was this plan:  If he is doing well, everything stays quiet, and we are liking what we see, then we push forward with continuing cytoxan and IVIG.  The first move we make is to slowly take away the weekly steroid infusions.   Go from there.  IF he doesn't do well, continues with signs of disease activity like muscle weakness, more calcinosis, rash activity, then we will write down that we gave cytoxan a good try and switch up treatment.  The treatment they want to give him is Orencia.  Orencia targets calcium process as I under stood it.  Ok.  It's a plan.

The infusion itself did not go well.  Well, from the over all health of him feeling his typical it did but a very curious thing happened.  Back on June 19th is when we found out about our buddy Mason Smedley.  It was that very room I sat in complete grief and anguish, mourning.  That night a mistake was made.  I had fallen asleep because of pure exhaustion.  I did not over see every medication.  The nurse who administered the IVIG infusion did it at full rate.  Why is this bad.  Gary has had reactions and even has been labeled "allergic" to certain brands of IVIG.  So to be very careful we always run the infusion at half the rate.  It works very well.  Minimizes side effects like headaches, nausea, tummy pain, and the over all ill feeling. It has worked great.

We were put in the same room this time as well.  The Cure JM Foundation was in contest on facebook for win grant money.  I was following it closely.  So after getting Gary's port accessed (which went amazingly well) I took a minute to check in and see how we were doing.  The Smedley Family gave the foundation a precious gift.  They posted a very private photo of Mason on his final day here on earth, and asked everyone please vote.  I cried.  It felt so weird to be in the same room,  the same day of the month  (19th), and looking at those pictures.  What do you suppose happened again?  It happened AGAIN.  I fell asleep.  I did wake up like 5 times that night to help him go to the bathroom so my body was aching for sleep.  Finally around 4am I slept.  I was in and out of it but officially up at 8am for rounds.  Talked to the doctors, then settle back in the finish the rest of the day.  Suddenly I heard the nurse say he didn't need vitals done anymore to a cna because his infusion was done.  My heart flopped.  "What infusion is done?".   She was aloof and seemed too act clueless.  "Oh, um, the IVIG."  She said with a cheer and tried to be confident.  I quickly shot her confidence full of holes.  "What time was it started??".     "5am".   To my horror I looked up and saw it was only 9am.  The IVIG at half rate to minimize the side effects and protect him against allergic reactions was suppose to run over 8 to 10 hours.  I fired question after question.  Her only answer was, "I don't know, and I wasn't told".  I began to cry in frustration.  "I can't believe you guys did this again."   I backed off and followed it with, "I am sorry, I know you are not responsible for this."   Later however, I thought she was.  When she came on shift she should have caught the error because she started at 7am.  The IVIG was running at the rate under her watch.  I pulled the blanket back, and under neath it was my ghostly white chubby little five year old, sweaty, but sleeping.  Nothing could be done.  I felt bad for the nurse.  I felt bad for me that I let if happen.  Most of all, I felt so bad for him.  He woke up about 15 minutes later.  Voice groggy, needing to pee.  Our neighbor's family came to visit, so the happy sound of family reuniting turned into what sounded like a cocktail party.  I so truly wished he could have just kept sleeping.  Gary refused breakfast.  He intermittently kept gagging has if he the nothing that was in his stomach, was about to come up.  The resident doctor came in, sat down to apologize.  At that point I didn't want to talk about it.  I didn't want to discuss it anymore.   It was just has much my fault as it was there's. But of course, YAP YAP YAP. My favorite was, "good thing he tolerated it."   Go away from me.  I had them run zofran through his IV which helped a lot.  It perked him up a little.

So they were ready to discharge us.  I told them no.  We had an appointment at 3pm on the other side of the hospital.  It was purposely planned that way.   The appointment was with plastic surgery to look at his elbow.  We sat there all day.  He slept for a couple hours as much as he could.  That particular room, because of its location (in front of elevators, nurse station where everyones call light go off) sound more like a carnival then a hospital.  When it was time to head back over to clinic for the plastic surgery appointment, he could barely walk.  His limp was pretty bad and he was so very very red.  His arms were red.  His legs were red.  His little face was red.  He was quiet.  I had my hands full of all of our stuff, so I could not carry him.  I asked if he wanted me to get him a wheel chair, he said yes.  I paged our nurse.  She said sure.  I watched her step into the hall, look up the hall, down the hall, then say, "oh I don't see one".  I shook my head and said, "baby you are just going to have to walk."  I told him I would sit and take breaks if he needed.  The nurse saw him take a step and wince and get woosy.  She got on her phone and said wait I have someone looking!!!   I said, "nevermind".  Done.   We made it.  The more he walked, the more he once again perked up.  At clinic we checked in right on time.  Gary layed in the waiting room.  45 minutes later they finally came and got us.  I was so close to leaving.   I could not miss this appointment though.  OH thats right.  I could have!   She did NOTHING.  She didn't even take off the bandage.  Thank you.  Thank you very much for having us wait which put us in rush hour traffic.  It ended up taking us two and half hours to get home.  They just want the hole to close on its own.

I am tired, and just so burnt out.  I need to find my reset switch.  I only feel worse today.  But you know what the good part is?  This isn't about me.  It is about my son.  This morning he woke up cranky but more or less good considering.

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