We had a long difficult day going in to Dana Farber (DF) for treatment Wednesday this week. The fistula was still very weepy, we'd bandaged it but it wasn't holding. We were 2-3 days out from release from hospital and still getting a handle on the med schedule and tube feed. We brought all the supplies with us (tube feed, med box, suction equip, our medical world). I was stressed, James was sore and exhausted. We didn't receive the best news from the oncologist (we may know more when we meet with the surgeon Monday Dec 13 so I'll hold off on sharing). Even though news wasn't great oncologist is fabulous and nurses are angels. We made it through the treatment. The ride home was not fun with rush hour traffic, James bandage leaking, pulling it off, driving with it open with James monitoring/catching issues. It was a long few hours.
Because we had so many issues bandaging we're opting to leave the fistula open and feel like it's weeping/leaking less. It seems easier to maintain and James has been manning the suction equipment himself for trachea, stoma, and fistula. I barely help at all although I'm still on standby and flutter around him when he sleeps. I keep the med and feed schedule and manage the bolus feeds/meds (crushed pills are also through PEG tube with water). We're sticking close to home as it feels complex leaving the house. Maybe it'll get easier once the fistula is resolved, hopefully the fistula will be resolved. Wondering if it's healing (weeping/leaking less) because he's not using his throat/esophagus at all for food/drink or because we're leaving it open. Who knows but nice intensity of care has lessened.
James is feeling pretty well now that he has a steady food intake with the PEG tube (PEG tube via percutaneous endoscopic gastrostomy, an endoscopic medical procedure in which a PEG tube is passed into the stomach through the abdominal wall). We have box on box of delicious Jevity 1.5, supply via secondary insurance, it's free until June because we'd met our medical deductible for the year, nice. I'll still look into switching over to VA which is always covered 100% but haven't touched base with them yet.
We were sent home with a bolus gravity feed schedule which we're already deviating from. He's supposed to have 5-6 containers a day and the schedule was 1 then 2 then 2 then 1 every four hours through the day but the two at once was too much so we're going with 1 container when he feels hungry which still ends up being the 5-6 per day. It's a gravity feed set up with large syringe (no push, just letting it flow into stomach) which also feels more gentle/natural. I feel like he's regaining strength and energy with the regular nutrition. He rests/sleeps on and off through the day. Seems to have an energy spurt when I sit to make beads at night. Last night he was up vacuuming and doing laundry midnight to 2 am. Gotta make hay when the sun shines, or vacuum when the body feels like moving.
He still has the new stomach pain with PEG tube insertion surgery which may take a while to resolve. Perk is that the neck pain isn't bothering him as much with the stomach pain and the back pain that was a lifetime ago has taken third seat to stomach and neck. James is settled no in a new high tech recliner that his sweet sister and bro-in-law found, delivered, and installed last night. He's sound asleep. It's electronic able to raise/lower legs independently from back which can go into full recline. It'll also lift/tip to help stand up. James is so used to the old manual recliner, he's still crawling in and out of this one. I'm dying to push the button to lower the back while he sleeps so his head isn't tipping forward but don't want to wake him up. We'll have a little learning curve with use.
The kids are such a help. Running all the errands. Winding and restarting the town clock when we'd lost track. Just being around for moral support and normalcy in the house.
I'd also like to thank our sometimes anonymous loves who've sent a little $ for heat or paid off for our power. The loves who drop off gifts of snacks (for me and the kiddos), gifts cards for grocery or gas, cash for random bills and whatever else has come up. We are surrounded by kindness and generosity and I'm constantly on the edge of being a puddle on the floor not from the stress of this *&^(+ cancer but from the kindness of our friends and family. We are blessed. I am thankful. We feel loved. We send love back to you. Thanks for being in it with us. We appreciate you! xxxoo Beth and James
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