March Infusion

So I didn't like our nurse this time, but that's ok.  She knew everything, I knew nothing.  This was suppose to be our first pamidronate infusion but it was cancelled.  God orchestrates.  Our nurse was not complacent but not, responsive.  She was very good with Gary, but lousy with parents.  I asked her 4 times,  4 times right to her face, what medication are running first?  For a second I thought I had died in a car crash on the way to hospital and my spirit was asking her because she acted like she didn't hear me!  When I finally made first contact, (no introductions) she said we are doing IVIG first because it is here.  I told her I prefer that the pamidronate is run first because it was the first pamidronate infusion he has ever gotten.  "IT IS???" she said.   OH boy.  This can't be good.  I have had nurses in the past who ask about his history so they know.  I found her to be a little arrogant and complacent.  I am not trying to be mean but I was so relieved when the pamidronate was cancelled.  It was cancelled because Dr. E came over to check out a rash Gary had had for 24 hours.  It was all over his arms, chest and face.  It itched a lot.  Enough for him to itch his skin off in spots.  I loaded him with benadryl trying to help but it didn't really help.  Dr. E did not want to introduce the pamidronate because if he happen to have a reaction, it would have difficult to distinguish which was what,  rash or reaction.  I thought it was for the best since our nurse didn't take the time to get to know our history.  She was my opposite nurse.  She did a fine job but I just didn't prefer her.  She suggested everything opposite of me.  Gary likes cool wash cloths for his arm especially when the benadryl is going in,  she wanted to give a warm pack.  She explained the reason but I didn't give a crap. ATTITUDE? ME?  Our two year anniversary is coming so forgive me if I think I have learned a thing or two in the past couple years.

There were a lot cancer patients in the infusion center.  Loud vomiting behind what seemed like every curtain. I don't mind it at all.  They need to do what they need to do.  Two other things that bothered me were during the day two four year old girls came in across from us for infusions.  I don't know what they have or why but they both had IV's started.  The first girl whimpered at the most.  The second was poked 4 times without a peep.  What the heck.  My son screams like he is being murdered.  I am concern he is suffering not only from juvenile dermatomyositis, but a post and pre traumatic stress syndrome, if not both.  : (

I have wonderful support from my family.  My sisters are so great and understanding.  It is hard for my husband and I to connect on things.  In bed, not talking, I finally laid it on the line what was going on with Gary because he didn't seem to understand.  He understands now.  I know he is trying to keep the walls up in this house and paid for, believe me, I look around worrying about how to pay to the mortage, all the while wondering if my son will make it out of all this a healthy adult.  My neck is tight and I have regular kanker sores visit my mouth as a result of stress.  Stress of keeping my child healthy and stress of making sure he has a place to live and food to eat.   Rut Roh.  I think I just did an emotional vomit on blog.  It is hard when you have to live with your spouses decisions.  He decided to be a coach for our oldest son's team, which is awesome. The other nights he umpires to earn a little cash.  He isn't home until at least 9pm every single night.  This is on top of his full time job he puts his heart and soul in too.  So not taking anything away from him but.   Some of those nights are not supporting our income.  Why don't I get a job then.  I think I would like it but I need to be on my game with Gary.  We are at the hospital often, and sometimes it is days in a row.  I have tried to hold out so I could be here with him but oh the weight of it all.  My husband is a great person but I think we need to re-prioritize things.   I know this is airing out the laundry so to speak but I just wanted to share so maybe other families could relate.  I am so thankful we are together and I have my parents and my sisters.  I think I have been struggling with a small amount of depression.  It may be a grieving thing again with the news that Gary's calcinosis is threatening his feet and possibly the way he walks and signs that this disease is still dripping like a leaky faucet.

I called today to try and get his orthopedic appointment moved up.  Dr. E mention that if I wanted to be seen sooner for his toes that she could help pull some strings.  This morning when he woke up, I notice the toe joint at his foot looked larger and the toe is turning in more aggressively.  I called and threw my help line out.  I think that Gary has quick process with his disease.  When something new presents itself it doesn't take long for it proceed with damage.  I think that if there is a chance to avoid any kind of invasive correction for his toes, such as surgery, we should put that into action and avoid it at all costs.  Hence the getting in sooner.  I don't want another month to go by and see what his toes are doing in another month.

I do believe you have just read a VENT.  Nuff said.