Good-bye for Now

Over the past six months, we’ve felt like the end of infusions was nearing for us.  Megan had been receiving Actemra IV infusions since August 14, 2013.  She has two decent veins on her entire little body.  We’ve accessed those veins over 80 times since her diagnosis in October 2012.  Blood draws, infusions, MRI’s, etc….all using those two veins.  They are tired, and we are tired of having to make several attempts to place an IV catheter at each infusion appointment.  Thankfully for us, Megan’s medication was approved for subcutaneous use (so a shot at home) about 6 months ago.

We’ve talked with her since we heard it would be available, and she insisted on continuing infusions.  At last month’s infusion despite our best attempts to warm and plump her tired veins, she had to be poked more than once to finally get access to a vein. She finally told me she was ready to ask her rheumatologist about doing shots at home.  My concerns were that we might still have to access those little veins each month for lab work, so I had some questions for her provider as well.

After a long conversation, Megan made the decision to try at-home injections for three months to give her veins a break.  The great news was that her lab work could be done with just a finger stick, not a catheter, so we really would be giving her veins a break!  The other benefit to the injections would be that she would receive a dose of medicine every two weeks rather than every four weeks.  She had been having issues in the 10 days or so before her infusions with stiffness, swelling, and pain in her knees, ankles, and wrists.  We asked her rheumatologist to order the medicines and we would get started right after our vacation.

Megan’s first at-home injection was Monday evening.  We applied numbing cream for 20 minutes, an ice pack to numb her thigh for another few minutes, then did the injection.  She cried and said the medicine burned a lot as I injected it.  She wasn’t happy and said after the three months, she wanted to go back to infusions.  After sitting with Daddy for a while and talking about it, she agreed it probably was better than multiple pokes for an IV and sitting at the hospital for several hours.

Friday would have been her next infusion.  We decided to deliver goodies to the infusion clinic nurses and patients.  My awesome sister and her friend did a greeting card fundraiser via Usborne Books & More and raised almost $200 for us to spend.  We visited our good friends at Eat Up! in Granville for soups and bread for the amazing nurses.  We purchased stuffed animals, activity bags, crayons, and balloons for all of the patients.  Megan delivered her goodies today since they had the day off from school.  We said “good-bye for now” to what has become our home for about 300 hours over the past 5.5 years.

“Messy Mary” and Michelle have been two of our favorite nurses, so we made sure to grab photos with them before we left.  Somewhere in the depths of facebook, dropbox, email, or elsewhere, I have a photo of Megan with Michelle at her very first infusion, checking her height.  Once I find it, I’ll put them together.  She’s grown a lot in 5.5 years (Megan, not Michelle!).

 

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