My goal is to survive until Monday's first clinic day by successfully administer all of Shayna's meds and getting unpacked and situated for our 2 month Pittsburgh stay. Meds are currently:
1) Prograf/FK for immunosuppression to prevent rejection, 2 different doses given morning and night with 1/2hr no eating afterward so it absorbs properly (and no gorging before); for life
2) Bactrim: 5ml Monday, Wednesday & Friday to prevent pnemonia; for life
3) Prednisone a steroid to treating current rejection episode, 1-1/2 extremely bitter pills twice a day, as of last night we are currently using Hersey's chocolate syrup to get this down, though she still doesn't like it much. This one is my biggest daily battle and if not done right can hinder other med administrations.
4) Aspirin: once a day for thinning the blood so clots don't form at the artery connection points with the new liver, 1/2 baby tablet crushed in 1/2ml of water
5) Pepcid: once a day 1.3ml sugary serum, to prevent stomach upset, ulcers, etc due to Prednisone
6) Actigal: 5ml twice a day to keep the bile flowing well so the connection points to the new liver don't get clogged up and require reconstructive surgery
7) Florinef: 1/2 tablet once a day to bring down her potassium levels (elevated due to Prograf)
8) Vitamin: 1ml daily, tastes like slightly rotting oranges so not a favorite, to bring her fat soluble levels up to normal since she was defficinct before transplant
9) Mycostatin/Nystatin: 5ml twice a day to prevent thrush in the mouth and digestive track, tastes like bananna cream pie with a little medicine so yummy
10) Sodium Bicabinate: 10ml to correct another electrolyte imbalance created by Prograf, tastes like liquid baking soda so I mix it 1/2&1/2 with cherry syrup but have only managed 1/2 a dose the last 2 days.
So that's 10 meds with 13 daily administrations and a 14th on Mon, Wed & Fri. Over half will be gone by the time we go back to Blacksburg and hopefully some will be backed off on as soon as Monday.
We're enjoying being home with a smiling, growing baby but sad that Grandpa Michael left today. I'm going to have to start doing all the shopping, cooking and laundry for my family as well as not having someone to dump Shayna on for a few moments peace. Time to get organized as check lists always make never ending jobs more satifying.
Merry Christmas!
That is a lot of meds! I remember holding Kai down at 2 yrs old just to get one antibiotic in him and being exhausted afterwards. Some food is on the way from Blacksburg Mom's Club when we arrive for our short visit Sunday. Hopefully that will help a little. -Leslie K.
ReplyDeleteYou should get an honorary pediatrician's license with all those meds. Does Nahum take his meds better or does he need chocolate syrup too? Good talking with you this morning. Lots of love to all of you - Carole
ReplyDeleteSo glad you get to cut back somewhat on the daunting number of medications fairly soon! Love, Melinda
ReplyDeleteWow, this med schedule sounds like more than a full time job! We're thinking about you guys.
ReplyDeleteWow! That is truly incredible! The silver lining is definitely the amount of chocolate and cherry syrup that comes with it. Wishing you smooth sailing this weekend. Love, Maja
ReplyDeletePlease feel free to call us for cooking and for a few moments alone (glad to take Shayna). Sorry we haven't visited before we left with all the family illness, but we'll be back Jan. 3. -Hertzmans
ReplyDeleteHey Patricia! This is Kate Kedziora. Don't be silly, I will be your mommy's helper and cook, do laundry and grocery shopping or play with Shayna and help with meds!! You better put me to work :) See you tomorrow, 10 am!
ReplyDeleteWell that was a nice post. I liked it.
ReplyDeleteBathmate
You all are doing great and just remember each day one at a time. You are the little engine that can and will make it up this mountain!!!! The fight with medications makes me remember Ian a year ago where I bribed him with EVERYTHING known to get him to take those meds. You will rejoice each time a med comes off the list. Are you allowed to mix the meds with anything? When Ian was Shayna's age we mixed everything into yogurt and it worked like a charm.
ReplyDeleteYou are awesome!!!!!
Glad to hear that you are home (at least the temporary home). What a great Christmas present! That is a long list of medications. I could barely get Ty and Cory to take an antiobiotic! Take care and know that the Horton family is thinking of you.
ReplyDeleteLove,
Candace