Wednesday (Day 7 Cycle 2)

Our newly created daily med log form 

One of Bob/Team Summer mottos is "No Mistakes" when it comes to all the medication that Summer is on, so we spent the morning brainstorming and coming up with ways to make the dispensing process dummy-proof and to make sure we documented what was going into Summer's body.  Summer had some additional suggestions & data to add - temperature (am and pm), "poopies", sleep and water intake.  We also added a fun mood tracker.  

Laura wants to include a parent mood tracker too!  HA HA HA   

Around lunchtime today, Summer noticed that the insertion point of her PICC line was bleeding more than usual.  She sent a message to Dr. Parry on Patient Portal and called her office to talk about it.  They said that the visiting nurse will take care of it on Thursday.  That did not go over well as it made her extremely anxious & put herself in a tough spot mentally worrying about all the things that could happen.

Summer also has been trying to get confirmation that the visiting nurse will do her labs tomorrow at home.  She needs Dr. Parry to put in that order so it can be done at home, rather than at Dana Farber in Foxboro because at the Foxboro location they won't use her PICC line to draw blood, and she would prefer to not get stuck with another needle if she can avoid it! 

Finally, she got a call to do her pre-check for her MRI on Friday. And Dr. Parry wants her to stop using heparin and alopurenol.  Bob and Summer should not clean the PICC line today. Dr. Parry’s office was also going to double check the blood work orders for tomorrow.

“Congrats - I always like to celebrate when you are down one medication” ~Dr.Parry  

Fragoman:  It appears from the portal that the Medical Provider Form may have been submitted to Unum, as we no longer have any open tasks and the portal reads " 

It would still be great to get a copy of the form they submitted, so Summer is going to make that request again.  BUT more importantly is that we received the official letter, in writing, stating that Summer's ADA leave until November 1 has been APPROVED!  Yahoooo!!!  Once less thing to worry about. 

And we heard from the HR team at Fragoman as well.  ALL is good on that front too.  PHEW! Hopefully this is the last post/reminder about work or FMLA paperwork!  

Correspondence from LOA @ Fragomen

Best Wishes from Ohio:  Tonight we got a wonderful loving surprise- a big virtual hug from Ohio from Nana, Uncle Bob, Aunt Jennie, John, Kolbe, Bobby, Ellie, Maria, Joey, Aiden & Rosey! 

The Rice family sends their LOVE to Summer 

Summer Strong

Kim & Summer returning the LOVE to Ohio! 

The day ended on a difficult note with Summer’s heart continuing to beat HARD. She called Dr. Parry who said she should be fine but there was debate as to whether we should go to the ER anyway. Ultimately she took some meds to calm her down. Hoping she’s able to rest tonight. A visiting nurse comes tomorrow.