Monday, June 15, 2015

The weekend review

This past weekend was the first weekend in 2015 that I had very little work to do.  It left for a lot of time to get caught up on medical stuff, yard stuff, other stuff and make some plans for today.

Here's a recap:

  • Spoke to one of my docs on Saturday and I do indeed have Lupus.  I started back up on the anti malarial drugs only they doubled my original dose.  This stuff is so toxic, I have to have my eyes checked every three months.   Remind me again why I want to do this to myself...sure, put lupus in remission and go blind in the process.  
  • I decided to finally email our local Oncologist and Dr. Shimamura in Seattle.  I heard back from both of them today.  Dr. S is really sad to be leaving us and said she was going to call me personally because we have found our way to her heart.  She said we can always email her.  She suggested transitioning all three kids to her adult Hematologist friend in Seattle and the Cancer Alliance Center.  I have met the new doctor and I know they will keep in close contact with each other should something come up but I just don't know...Dr. S said if we get it scheduled the first week in August, she will meet us at Dr. Keel's office and make sure the transition goes well.
  • I gave our local Oncologist an out but he said he would be willing to stay with us.  For now, we will plan on doing biopsies with him in August...I think. 
Well, those are the three big things.  I still feel very confused and lost as to what to do for the kids.  

I think something strange happens to me when I'm not working a hundred hours a week...I have too much time to think and worry.  Today has been such a low energy day! 

At Pulmonary Rehab, the therapist and I were talking while Shelbie was doing her exercises.  I mentioned that Shelbie had a really bad weekend.  Always winded, even just walking the shortest distances and not even walking fast.   The therapist said that in a couple more weeks, we should see some improvement but that we might need to consider using oxygen at home.  

Ugh...I can't even go there yet!   What she says makes total sense but still...

They continually monitor Shelbie while she is exercising.  Each exercise and reps is designed just for her based on what her heart rate, blood pressure and respiration rates are doing.  It's pretty amazing how they do all the monitoring.  A couple of therapists sit at computers and just keep track of everyone's heart rate, etc.  The therapist told me that even though Shelbie's oxygen sats are 'okay' at 92-95, whenever she exerts any energy, her heart rate goes sky high!   That is a sign that she is not moving oxygen correctly between her lungs and heart.  For now, her heart is compensating for the lung issues but eventually, it's going to wear her heart out.  She's too young for a worn out heart.  When she wears the oxygen, her heart doesn't have to work so hard. makes total sense but there is just something about 'going' there...I just can't do. 

Sam came with us today and she was asking why Sam isn't here and I said that for now the steroids seem to be helping him.  But...again, he is having the same issues as Shelbie. 

Every time we go, everyone is so kind.  The men there are completely smitten by Shelbie.  They LOVE her and she loves the attention.  The women love her too.  After she was done, a couple of ladies invited her to sit down and have a drink of V8 juice with them.  They asked about her photography and she shared some of her latest pictures.  They just doted over her.  

When a couple of the men came in, they said, "Now, where is that beautiful little girl of yours?"  They would scan the room and wave to her wherever she was.  

With Sam there, the women couldn't stop talking about how handsome he was.  One lady said, "Well, you may have screwed up their lung and heart genes but boy you did okay in the looks department!"  

I love these people!  They make me smile and they make all the crap outside of those walls just disappear for an hour or so.  

Shelbie completely wilted after rehab today.  I don't know what is happening to her.  She seems to be going downhill.  Tired ALL the time...just not feeling well.  Something is going on, I'm just not sure what. 


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