All is well!!! Praise the Lord!! Two really good nights and days!! Getting lots of rest. First day out really was hard on Angie. Going to transplant infusion center for 4 – 5 hours was way tooo much and she paid for it the next day. Extremely sore and nauseated, body wasn’t used to up right position for that length of time. She has since recovered from that little journey. Lots of rest. She is still sore and needs help getting up from sitting position. We are now mixing medication and food every 8 hours. Made a schedule for food (8 am, 4 pm and midnight) we mix 360 ml (Peptamen), 120 ml of water and 8 capsules of (Creon) enzymes, this is pumped into her feeding tube at a rate of 60 ml an hour. Creon is dissolved by opening capsules mixing with 1/2 tablet sodium bicarbonate(650mg) and15 ml of warm water(sitting a minimum of 20 minutes to dissolve). She is also getting some liquids orally(sugar free popsicles, flavored vitamin water and chicken broth). Keeping track of when to give medications and what to give I leave up to the nurse (MOM). She has the medication sheet and doesn’t let me near it and I don’t blame her!!! She has a system and it works. Angie is now on 19 different medications.WOW!!! They have actually whittled it down some. GOD Bless MOM!!!! Praise GOD!!! Angie is a lot more comfortable at home away from home and its starting to show(freckles) we haven’t seen those in a long while. She is getting pain medication about every 3-4 hours. Nausea only seems to be in morning after sleeping all night. Praise GOD!!! This used to be her biggest complaint( being nauseated all the time). Really good afternoon,went for a walk around hotel with her mother then after napping is crafting( making some kind of flowered headbands and hair clips) for fund raising. GOD is Great!!! Truly amazing watching transition.GOD Bless!!!
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