Wednesday, June 1, 2016

Day +204-Day +218

Today is a big day, another milestone.  Steven has had his blood drawn through his Hickman catheter for the last time.  He is scheduled to have it removed today.  You would think we are dancing a jig but it has become an old friend...literarily a part of him.  It's part of our routine to flush every day with heparin and change the tips and dressing every week.  Since he hasn't received a unit of blood for 3 months, it is time to have it removed.  I think I already mentioned that most patients have their line pulled around 100 days, the magical number that betrayed us.  We got to wait twice as long as most patients to see any kind of results...Murphy's Law.  The transition of blood type was the sticking point but fortunately we are there and no worse for wear.  Did I mention the Hickman is inserted into the superior vena cava, direct flow to the right atrium of his heart?  It's time to get rid of it and the infection risk not to mention how nice will it be for Steven to not have to put the line in a baggie and tape it to his chest when he takes a shower.  It couldn't get wet...weren't you wondering why we haven't been to a water park???  Going forward, he will have his blood drawn like the rest of us.  He was getting very hard to draw before the line was inserted in September, but that may have been because he had minimal platelets, WBC's and RBC's.  He has had his Hickman since the end of September and it is time to say goodbye!

Clinic visit went well but Steven has had a lot of nausea this past week.  They will keep his meds the same and gave their blessings to have his Hickman removed....although they thought about it for awhile.  He most likely has a little GVHD and they were concerned with dehydration.  Steven was given his marching orders to increase his nausea medication and we have to come back next week...bummer.

We were here 1/2 hour early so naturally they took us 1/2 hour late for clinic which made us 1/2 hour late for our Hickman removal.  I got to watch them remove it...so cool.  I will post awesome pictures in a separate post.  If you are squeamish or don't dig medical pictures, you can skip that post with the rest of the humanities majors. :)

It's National Nurses Week and we brought donuts/Nothing Bundt cakes for our nurses at the VAD draw center and at clinic.  The nurses at City of Hope are stellar, top notch professionals.  I can't say enough about them and how amazing they have been through this entire process.  From fighting...I mean speaking with our insurance company, to helping us get our Hickman supplies, to listening to our concerns (whining), to all the reassurance and compassion, they have been with us every step of the way.  Thank you!!

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