Saturday, March 10, 2012

Where To Begin

I wish I could start this with telling you about our March infusion.  I wish I could say it was all easy peasy.  but it wasn't.  Monday was our clinic appointment.  We saw our rheumatologist for the last time in clinic.  She is retiring in April.  Everything at that point seemed fine.  Gary had run low grade fevers three different times in February.  We treated with tylenol and no other symptoms besides the obvious and same old diarehha.  By Tuesday things took a turn.  The fevers took a turn for the worse.  He woke up at 8am.  Came down stairs and went to back to bed on the couch till 1pm.  I kept checking on him.   I noticed his face swelling in his sleep, and a rash coming in.  When he finally woke up, I gave him lunch.  He ate a little bit then complained of headache.   I found the tylenol and noticed he was warm.  A fever of 102.  Before the tylenol could digest he vomited explosively.  I called and left a message with the nurse.  I assumed they would tell me not to come in for his infusion the next day.  But his doctor wanted him in.  Fever or not.  He felt much better after vomiting and even ate a little dinner that night and kept down his steroid dose.  But at 10pm another fever.  At this point I had a choice.  Give him more tylenol and sleep one last night in my bed or head to the ER.  We are veterans of this.  We have been here before.  So I decided  to give him tylenol.  If the fever broke then we would get up early and head to the hospital.  If it didn't then we would head out at midnight.  The fever broke.  We slept the night, well barely for me anyway.  The next morning we were admitted.  Things started to unfold.  During the clinic appointment it had been determined that Gary would need a colonscopy and endoscopy.  A level of inflammation was detected in a stool sample.  It was a level that was suppose to be 100 but came back to be 2500.  With that they said it was worth investigating further.  He was already scheduled to be admitted for IVIG and pamidronate so they were able to get him in for the colonscopy and endoscopy. 

The endoscopy and colonscopy was really hard.  After the labs came back crazy high, we got comfortable for an overnight.  Something is not right.  As soon as we checked in it was deteremined that he was scheduled so nothing by mouth was ordered.  The day before he was vomiting so he was really thirsty.  My day and his day went from bad to worse. After two hours of begging for something to drink, he was finally cleared for clears.  Chicken broth, jello, sprite, or clear candy.  All mixed with Miralax to clean him out for the colonscopy and endoscopy.  On top of already having diarreha plus giving him benadryl and the IVIG.  Made for an interesting time.  Imagine being sleepy but need to go to the bathroom.  He was miserable.  The misery sent him into a breakdown.  He awoke from a nap.  He was mad.  He kept standing on the side of his bed screaming, calling me names.  He threatened to pull his IV out.   He would not let the nurses touch him.  They needed to get vitals.  It was impossible.  As we came towards the end of the IVIG he became even more agitated.  Despite running it over a ten hour rate, stopping the infusion half way and giving him benadryl, he still had a reaction.  A large headache, hives rash all over his chest and unnatural irritation.  We abruptly stopped the IVIG.  They tried to run more benadryl but he was very intolerant.  I told them to turn off the IV, he had enough.  He was suppose to get pamidronate after that but he clearly had enough.  The IV was flushing fine but every time they tried to even push a flush, he responded.  Everytime we turned it off, he fell aspleep.  It was agreed to let him sleep through the night.  He had a procedure in the morning.  The day before he had been throwing up.  His body had enough.  He slept the night away.  Well, in between vital checks at which point they detected irregular heartbeat.  Turned out to be nothing.  Then his Bp dropped too low.  The nurses didn't like it but the doctors said it would be ok.  For the most part, his BP is on the high end.  So being too low was a nice change.

We woke up the next morning at about 730.  We were scheduled to be transported to the surgery center for the procedure at 9am.  I was releaved when they came early.  After midnight before he was under NOTHING BY MOUTH at all until after the procedure.  So 8:15 rolled around and they came and got us.  Thank you Lord.  The quicker they got him in the better.  I had not taken the time to tell him what was about to happen.  I didn't know how.  How do you make a five year old understand?  I decided to wait until we were in the prep room.  I explained they were going to give him medicine to make him sleepy.  He was going to take a nap.  The bad IV from the night before was removed before so I was thankful to hear they were going gas him before starting a new IV.  He cried.  He cried a lot.  He told me he was scared.  Several times he needed to use the bathroom.  It was hard to talk to nurses and doctors in between running him to the bathroom.  He broke my heart with begging me, "Mommie, please.  I scared.  I soo scared.  Don't let them put me to sleep."  He cried for his Aunt and Uncle.  Thank the Lord again to them for coming again!  It made it easier.  It was time to wheel him into the procedure room.  He wept.  He wept as they placed the gas mask over his face.  I stayed as close as I could to him.  I remained positive and non chalant so he would not be scared.  I acted as if it was no big deal.  I refused to take my game face off.  As the gas took affect, his eyes rolled into the back of his head.  His knees fell to the outside of his body and he was quickly asleep.  The doctors looked at me and said, "ok Mom, give him a kiss".  I blew a kiss, he was out of my reach.  I couldn't bring myself to actually place my lips on his skin for fear the tears would flow in front of them.  I was not going to let that happen.  Game face.  Quickly out the doors with my sister and my brother in law.  I marched.  I marched straight faced.  I found a chair, sat,  and barried my face in my hands, letting my emotions flow. I kept it to five minutes.  After my sister said something to make me laugh, we went for coffee.  An hour later, we got the page to return to the procedure doors to meet the doctor.

The results of the scopes did find he has ulcerations in his colon.  Blood in the diarreha makes sense now.  It is why that is on hold.  Throat and stomach look normal.  The ulcerations in his colon are on the deep side but not crazy.  They took biospies.  They also took a lot of blood to test everything.  They want to make sure we are covering everything.  Infections, bacteria, viruses, ect,. 

After we talked to the doctor he told us he was back in his room.  We bolted across the hospital to get over to the room.  He wasn't there.  He was still in recovery.   We were told to wait in the room.  I couldn't.  I couldn't sit there while my child woke up after begging not to put him to sleep.  I had to be there.  The nurse sent us back to where we were.  It was hard getting back there into the procedure room.  They would not let me back there until he was waking up.  They put me in a room the was for people going into procedures.  I sat alone for 45 minutes.  Finally there he was.  Crying in recovery.  Not much but he survived!  : )  We didn't spend much time in there and got back to our room.  Back in his room he slept.  He didn't even bother to eat.  He just slept.  I decided that we would come back for the other infusion we skipped the night before.  He had been through enough.  I had enough and so did he.  The doctors were fine with that.  We wanted to wait for him to wake up to make sure he was eating and going to the bathroom.  He woke up in a good mood and immediately started eating and drinking. 

We started packing up because there was no use sitting around waiting for test results.  We noticed Gary's face was pretty swollen while slept in recovery.  When he woke, the infamous JDM rash set in hard.  His eyes were purple pink, and his lips were huge.  I was concerned put thought it was from the fact he had a breathing tube down in throat.  That maybe that trauma was contributing.  We were packing bags, and getting ready to get out of there when the nurse said, "the phone is about to ring, please pick it up, its the doctor."  She explained that they had done tested his blood for levels of his medications.  One lab was in, the cell cept or MMF.  It read 0.  It meant that he is not absorbing his medications.  She asked us to hang out a little longer until they could talk, and figure things out.  The bright pink eye shadow he was wearing suddenly started making sense.  High labs, bright JDM rash, vomiting, he is flaring.  An hour later, after I stopped spinning they came in.  I immediately told them he needed to be pulsed with steroids.  I told them I felt his JDM is flaring.  He is no longer on cellcept.  They also discontinued the enbrel shots.  Deciding to pull him off of what we can right now is better.  The next morning we were going to determine what to do next.  Since tests weren't going to be in till next week, they upped his steroid dose back up to 5ml.  From 1ml to 5ml.  After the intravenous pulse he looked a little better.  We had opted to skip his methotrexate shot the night before because at the time we thought he was "sick".  It is looking less and less like that is what is happening.  That it is in fact, JDM.  Since we were working on our third day in the hospital, we went ahead and did our pamidronate infusion.

So now we wait for Monday, possibly Tuesday.  He is doing better but everything is in the air.  I hate hanging.
Our nurse flushing his iv in his foot. She was awesome!


  1. Hi Erika,
    This just totally stinks! You guys are going through so much. I am praying for Gary. For these labs to come back with some answers on how to treat him best.

    Praying and praying for comfort, peace and health.


  2. My poor little super hero :(! He is so strong, like Superman with web powers like Spiderman, I just love that little guy so much and we haven't even met! I am crying as I type this!I am so so sorry little gary and you and your family have to go through so so much! I hate this disease! When I was reading, I was thinking I bet this is a flare, only because this is how I flare as well! I don't get the lips swelling though! I am so sorry he is flaring! My heart broke when he said Im scared mommy bless him you are a rock star to keep your game face...that is what I do with Kelcee so it doesn't scare her! You are the best momma EVER! He is so lucky to have you! I know how hard all this is on me I can't imagine how hard it is for a five year old! I don't blame him for not wanting anymore sticks, pokes, infusions, I am glad you told them to wait he had had enough! Bless him! I am glad they have figured out the culprit and they are working to correct it I am sad that he is having a flare and ya'll are having to go through this nightmare again! But keep swimming my sweet friend we will get through this...we will be in remission one day...we will! Like Winston Churchill says when your going through hell just keep on going! Saying extra prayers for you

    love summer

  3. Erika, you amaze me. Kennedy and i think about (and pray for you and Gary) all the time. This @#$#@** disease is so unfair. And super lame. But you are a total rockstar mom! When are they formalizing it and just giving you your medical license? :)