Tuesday, February 21, 2012

Lots of things going on

So it seems Gary may have picked up a little virus last week.  Valentines evening he ran a fever suddenly.  I gave him tylenol and his fever was better.  With the diarrhea Gary already had, adding a stomach virus on top of it made for a lot of bathroom trips.  A lot.  Diarrhea has been in our news for quite awhile.  We even saw a G. I. Specialist to see if further testing needed to be done, to see if it was the medications, or what was going on.  At this appointment we also talked about his cough.  The cough has eased up but really its a cruel joke to have a cough and diarrhea at the same time.   Something has to be fixed.  We did some lab testing to make sure there were no bacteria's growing inside him or anything like that.  Funny after the appointment he came down with something.  Last week he did not receive his methotrexate shot or enbrel. It was a little tough for me because the next day on the 15th he ran a low grade fever.  The clinic was busy and our doctor was on call so it took them more than 3 hours to get back to me.   I wasn't panicked for my own sanity I wish they could have called sooner.  But instincts are still intact.  Besides he was still eating and drinking.  Monday he came down with mouth sores again.  Like normal things were HOT.  I did see places in his mouth that looked like sores or something.  So Monday, Presidents day they were not in.  Ok fine!  One more day but I was going insane.  I was up at the crack of dawn this morning leaving long messages.  They returned my call immediately.  Our doctor couldn't see him today because the schedule was booked.  So she had us run him up to our pediatrician.  It was good to catch up with him. He is the one who thinks it is indeed a virus of some kind.  He prescribed malox and benadryl for the mouth sores.  What confuses me most is back in November when he flared, the inside of his mouth did the same thing.  I do admit this does seem to be a bit different but still.  We headed to Children's to do pick up some medicines.  My phone rang as I pulled in.   It was the GI clinic.  Apparently the sample we gave a couple weeks ago didn't give what they needed.  Just so happens, Yay! we were there to do it again.  Then my phone rang again saying they were filling a prescription to slow down his colon.  I am a bit nervous it will slow it down too much and we will have the opposite problem.  I just want his tummy pain to stop.  Tonight, after his first dose, we had success with diarrhea easing up but not the stomach pain so far.  But its only been hours.  Keeping a close eye.  If this doesn't work they are talking about scope him from both ends or cutting back on medications.  Both sound awful and scary.

I am going on vacation.  My children are staying with my sister.  Yes, this makes me even more nervous to leave for 5 days but the trip was a gift from my brother.

Monday, February 13, 2012

February Infusion

Oh its always fun.  Every infusion is different.  I can giggle now.  *Note to self:  Never infuse in front of nurses station.  They talk about a lot more than just medical stuff.  Don't get me wrong, they were appropriate but even when they disagree with each other or other people, its not fun.  The volume on my ipad wouldn't go loud enough.  It's like taking a nap in the middle of a cocktail party.

Gary did good though.  He was on the floor because their chairs are just not his size.  I am going to bring a blow up mini mattress from now on.  Next month we are admitted to the hospital because he gets IVIG and Pamidronate.

Gary's labs are doing fine still.  He did have a lot L's on it this time that I am not use to seeing.  I asked the nurse right why is almost all his numbers marked with a High or Low symbol.  She started to go through each number and explained that with all his medications and the fact he has a disease that they expect that.  She said his labs are very close to normal like by one number so it is nothing to worry about.   Yeah.  Ok.

We dealt with the drama of not having enough time in the infusion center.  They came to me and said, "the infusion center closes at 730.  At the rate we have his infusion set and the delay, we are going to run out of time so here is what we are going to do.  I already called the doctor and she ok'd it.  We are going to bump the rate of up at the end in order to get the entire treatment finished."  She sat there and rambled on about how it was important he get the whole dose.  Blah.  Blah.  Blah.  I said no.  I told her I don't feel comfortable risking making him sick or pushing a reaction because people are inconvenienced by time and want to go home.  I told her I would be willing to come back tomorrow and go home with the IV in.  We had an appointment with a GI specialist so whatever, no big deal.  Then I said what about just admitting us then?  Put us on the floor.  She said they won't do that.  Ok.  Moments later our Doctor dropped in.  She was checking on Gary.  I told her I am not comfortable with pushing the rate of the infusion.  She said no problem.  We will just admit you.  I looked at the nurse and said, "yeah, I asked about that".     They were agitated.  The nurse said we have to wait for admission to call when a bed is ready.  Dr. E said there is no bed shortage that she had heard of so it shouldn't be a problem.  After the doctor left I heard a small discussion about exceptions and the what not's of the whole situation.  Left hand talking to the right hand.  The nurse came back and said we probably wouldn't be admitted until 630.  Well Gary is sleeping on the floor right now so why not just send us now so he can sleep in a bed.  Get settle, get comfy, get away from all this noise.  She said she didn't have control of that.  She had to wait for admission to call her.  Ok, because they knew that if we were admitted at 630 by the time admission was complete, we would be ready for discharge.  So after all this 630 rolled around and in walked a charge nurse with a calculator and 2 other nurses.  She figured out that we would indeed be finished by 730.  Really, after all that.  Made me giggle in a exhausted sort of way.

The Popsicle

After Gary awoke from his benadryl coma, he had hankering for a popsicle.  They didn't have any.  So for one of the first times in our history with Seattle Childrens Hospital, I left him alone.  Awake.  I have snuck down to Starbucks maybe once or twice.  I ask the nurse to watch him as her desk was right in front of where we were being infused.  It was quick and did the trick.

Thursday, February 2, 2012


Have you ever heard you have a choice how you deal with life?  I believe there is truth to that.  But I don't believe it is entirely 100% correct.  I believe that everyone is different.  Our bodies are different.  Our chemicals are different.  What seems like no big deal to someone else is so much more to someone else.  I have dealt with this my entire life.  The poison I call it.  When something triggers me that I don't care for, I can feel it go through my body.  Its like a leak of yuck in me, producing foul, anger, sad emotions.  Over things I would normally shrug off.  Over things I know will turn out fine.  But no matter how many times I tell myself this fact, it still gets me, creeps back in.  It kind of feels like depression or maybe grief.  My grief yesterday was triggered at Gary's clinic appointment.

Rheumatologist Retirement
"Don't you look nice!" she said as she entered the room.  I thanked her and thought what a nice compliment.  We started with our usual chit chat.  How are you?  How is he?  How are things?  Long list, and she saved the best for last.  I will get back to Gary later.  "Erika, I have something to tell you".   That triggered no emotion in me.  It didn't strike me until the next sentence.  "I'm retiring."  She intently smiled and grimaced and waited.  I don't go around asking woman how old they are.  I couldn't believe I didn't realize it was time.  She is 65.  She has done her time.  But my reaction.  Panic.   My thoughts spun.  They pushed forward then swung back.  I went into a stare.  Then tears welled up, went away, and came back as I said, "you can't,  you can't do this."  As my emotions and ration kicked in I went into what a polite selfless person does and congratulated her.  Told her I understood.  I began to thank her, because that was in fact my heart,  I am thankful.  Then I stared some more.  She told me I have done an excellent job in Gary's care.  She was being sincere, but again, its a natural reaction to smooth it over.  She stared at me.  Another round of tears came and went.  We reminded each other of past treatments, and what a wild ride it has been for Gary.  I told her given the severity of Gary's case, that she and her team had done a very impressive job of getting him back and keeping him functioning.  I suppose I am so upset with this because as a patient there is a vulnerability of connection.  I connect all the bad news that has come with this disease, and the good.  Even when I had complaints, there was always praise and gratefulness.  I have been mad at her for silly things.  But I can't barely remember those.  I know it will be alright.  I already called and am on the schedule to have another doctor with the same level of experience, whom I respect, take over.  She told me I was on the list of patients she was most worried to tell.  The emotions this triggers is unbelievable.  I do tend to be emotionally dramatic maybe a bit irrational  when I hear things I don't care for.  Not loud or rude, well maybe but she was right to worry.  I'm still trying to entirely connect I'm taking this so hard.  I am in the market for a fabulous retirement gift.  I know with time I will mend.  LOL.  Feel like I am going through a break up.

Calcinosis around tail bone. 
Before the bomb was lowered, we went through all the discussion.  I told her I was done with this cough.  I wanted it to stop.  Please help me get this fixed.  Same with the diarrhea he has 12 times a day.  She is wonderful, she wants it fixed too.  Tomorrow we have a CT of his sinuses to see if its a drain.  If its not his sinuses then we will check if it is coming from his tummy.    She said she would check with the GI department to see if we could prescribe an anti spasm medication for his colon.  We moved on to JDM stuff.  I told her his nail folds look like crap.  She wrote down bad.  She giggled and said, "I will write bad if thats ok?".  She is very much use to me.  Upon examining she said, "I don't know, they don't look".  She stopped when she moved on to the next finger, and the next.  Did a never mind.  He has one or two fingers that are ok but the rest you can see visible dilation of the blood vessels.  I let her know there are a few new calcium deposits in his face.  The calcinosis around his tailbone is showing signs of surfacing.  For a few days I thought they might be a little pimple or something.  Most the time I can gently schratch something like that off.  It didn't.  She talked about seeing a surgeon so they are aware of him.  However, upon examination she said they are pretty deep still so it could wait.  We are under doctors orders to still gently.  She did his strength test.  We had a conversation about Gary's hesitation with stairs and certain things he can't do that leave me seeing muscle weakness.  She made a remark about how strong he is after doing the test.  I know she doesn't say that to negate what I am seeing or make me feel like a crazy Mom.  The victory was mine however at our next appointment.  Gary had a physical therapy evaluation.

I can't wait till she gets the report on this one.  The therapist hit every point I was seeing.  His function his there but his strength is not there to support it.  He has hip and leg weakness.  He straightens his left leg.  The therapist said it could be from calcium, "he goes up and down the stairs with a lot of compensation, like leaving his leg straight, pivoting his hip", much like an eighty year old man.  I am not sure how many times a week we will be doing physical therapy yet, but the orders will be doing in.  Time to get this boy strong or stronger.

Gary is such a sports guy.  He loves it.  So I signed him up for soccer.  Hopefully he will just stand there and look cute so the ball doesn't hit him or anything like that.  Doubt it.  It will be good for him? Hands over eyes.

Infusion next week.  Not looking forward to it.