Nerves of Steel…NOT!

The infusions once a week are going…some weeks better than others.  Have you ever prayed for a blood return?  WELL I have after the day all went well and saline went in just fine…but there was no back flow of blood to assure me that I had the needle in the right spot in the port.  I had Far Guy move his arm around…with the second syringe of saline Far Guy got a blood return.  We called the gals at the Infusion Center…they said everything should be okay. 

Through some research I found out that some people consistently have no blood return from their ports but their infusions go just fine.   Some people have problems because they are dehydrated.  The next week I encouraged him to drink LOTS of water, I didn’t care if he floated away…and yes I got a blood return…see water and prayers will go a long way.

Our daughter Trica the Nurse Practitioner said “Mom as long as the fluid goes in you should be fine.  When it doesn’t go in…then you have a problem.” 

At the time I did not have any extra needles either…now I do… I complained to the Pharmacist and now I have two extras just in case I have to stick him again.

I wish I knew what the problem was exactly.  But I can only speculate.  It really really threw me off kilter for a few days wondering what I could have done wrong…and could come up with no answer.  I went through it all in my mind a hundred times.  I was a wreck.

The next week everything went just fine.  Go figure. Must have been all those prayers I said continually during the night before the next infusion!

Is Far Guy better?  No, but he is no worse and he has not been sick since we began the infusions.   He is walking 2+ miles a day…some days the dog doesn’t even want to walk that far with him…Chance knows the way home.  Far Guy keeps everything recorded in a little black book; steps walked, oxygen saturation levels and his temperature.  His temperature is important…and unexplained temperature can mean that his port is infected…even though I wear a mask and gloves and do everything as sterile as possible  an infection could happen.  I try to feed him really well with lots of fruits and vegetables…and encourage the water drinking. 

Trica’s genetic test results are back, she is a carrier of Alpha 1 Antitripsin Deficiency, she is a MS (the M from me and the S from her father).  So far Maddie and Paige are not carriers they are MM’s …one M from their mother and one M from their father.  That was good news.   Trica being an MS most likely produces enough of the protein to protect her lungs from destruction. 

The genetic testing is free, South Carolina Medical University sponsors it I suppose they got a grant to do a study.  Since it is a very rare disorder not many people know about it.

Yarrow in the wildflower gardens August 24 2015

Update: Savannah’s test results are in she is an MM just like her sisters and just like me thank goodness!