Friday, April 22, 2016

Follow up part 2

Yesterday, we spent the day at the University of Utah Medical Center for Immunology follow up.  Things felt a little more settled and even somewhat hopeful.  Not so much in the sense that things aren't as bad as they thought, but hopeful that we managed to get through this horrible, acute situation from the biopsy.   The doctor was quite happy with how things are improving.

I learned an important lesson while in clinic.  Shelbie's white count was nearly triple what it normally is, as were her red cells and even platelets were up significantly.  I have seen this happen nearly every month when Shelbie had IVIG.  They would always draw her blood before the transfusion and give me a copy.  I looked at these normal counts and was happy, thinking that IVIG was really doing a great job keep her counts normalized.

When Dr. S walked in the room, he was a little on edge and nervous.  He said he had looked at her counts and was very worried that he was going to have to deal with an angry infection since everything is so elevated.  A month ago, her white count was in the high 1's which is extremely low.  As soon as he expressed his worry, it dawned on me that I have been making the wrong assumptions.  It isn't the IVIG making her counts go up, it's the fact that she gets sick every single month at week 3!  It's the virus or bacteria that is giving us the high counts and that is not a good thing.  Dr. S set me straight again.  We kind of feel she is sick from the chronic Adenovirus she has had for over 5 years.  The IVIG quiets the virus but when that runs out, the virus flares back up.

And speaking of IVIG.  We finally got approved for SCIG, the subcutaneous injections we will do at home every week.  I spoke to the specialty pharmacy and all of our supplies and plasma will arrive on Tuesday of this coming week.  A Home Health nurse will come out on Wednesday or Thursday and teach us how to do it.  I am very nervous!  She is suppose to come for 4 weeks before we have to do it all alone.   Her particular dose will pump in over 3 hours and she will do it once a week.

Dr. S is comfortable calling Shelbie's diagnosis CVID- Chronic Variable Immune Deficiency.  She does have the non-caseating granulomas which often progress to lymphoma and they are also in her lungs which means she could have sarcoidosis instead but really, they are very similar and share many of the symptoms Shelbie has, so it's not that critical at this point.   Because Shelbie has more problems with non-infectious symptoms, she is in a more advanced stage of the disease.  The biggest concerns are with her lungs, heart and spleen.  Plasma does not slow or stop the advancement of these issues which is unfortunate.

All the same, with surveillance for cancer happening every three months, Dr S said, (I'm paraphrasing...) Your only job is to live a good life.  Don't worry about this.  Do what you can and enjoy your life.

That is what we try to do.  Sometimes, we do it too well and it comes with a price tag.

Thursday was a wheelchair day for Shelbie.  She could barely walk 10' because of breathing and fatigue issues.   We will get in to the Pulmonologist and see if we are at the stage of needing oxygen yet.  We know from rehab that her oxygen saturation  numbers drop when she exerts energy and this causes her heart to have to work harder than is safe.  

One day at a time...

Sam stayed behind because he can't miss any school and he is already in danger of losing his credits because of absences so far...or so they say.  When we got home last night, I asked Sam if he missed me and if he liked being alone and independent?

"Yes.  It was fine."  He said.
"You didn't even once wish I was around?"  I asked
"Well, when it came to eat I wished you were here." His sheepish smile was enough for me to gasp.
Funny boy!  I was impressed though.  The house was as spotless as I left it and the dishes were done!
So...On we go with life.


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