Post BMT day 301
+301
After delays and weather of all kinds including snow, ice, lightning storms & fog, we finally made it to the Florida condo about 3 this morning. Another hour and a half of getting meds put away, catch up meds given, beds made and kids settled and we all were sleeping by 4:30. The condo will serve us well and we are grateful to just say that we made it!
Keira had appointments right away this morning. All went well. K is a really tough poke and after multiple tries and a fainting episode, iv contrast was administered and the final appointment of the day, mri, completed. It confirmed what was seen in Colorado.….the tumor didn’t miraculously disappear and turn this into an impromptu vacation; but confirming what’s there keeps us moving forward. Tomorrow appointments start at 7:30 am. I’m so so grateful that Drew is also with us as it means I’m not having to drag Tate along to all these early appointments. We are only 15 minutes from Mayo which makes going back and forth pretty easy. Drew is a joy and I’m grateful for the balance he brings with his calm, bighearted ways.
We ran into a really big hiccup with Tates homecare deliveries today. Probably more accurately described as a roadblock. I got a call from our coordinator in CO that FL will not/cannot deliver without an order written by a FL Dr. That sounds easy but it’s not. All WAS set before we left. Next step now is trying to organize the normal delivery to CO and then Tim would have to overnight very large and heavy boxes of iv nutrition and fluids. Overnight as they have to be kept refrigerated. TPN/lipids are mixed for each person and only keep for a maximum of 9 days before they spoil. We’re here for a month. So you can see the logistical nightmare.
We later learned that it’s our insurance that is denying the FL delivery. Either way, I’ve got 3 days of tpn left and two days of iv fluids if used conservatively. We’ve talked through all scenarios….alternating days to make it last, etc until we get this figured out. I absolutely won’t be able to get Tates enteral (feeding tube) deliveries but can just purchase our own pedialyte. She takes about 500-600 ml each night. Tim will definitely be bringing a large suitcase filled with all the medical supplies that I thought would be delivered, aside from the fluids. Getting through security last night with a suitcase full of fluids was a mixture of entertaining and ridiculous. Both elicited better emotions than the frustration that was vying for some attention. But again, we made it.
Tate is doing okay. Not feeling great. Not looking awesome, but hanging in there. Travel is tough on her. It feels like the fragility of her health is literally hanging over our heads. We are just praying for everything to hold steady while we’re here.
Absolute highlight is that Tate got to the beach with Drew and I (K was catching a nap.)I wish I could’ve fully captured the joy when she saw the waves and first felt the sand on her toes. It’s been 5-6 years since she’s been to the beach and has been a huge goal for her. We have been dangling the PT carrot of needing to be strong enough to walk through the sand. Today she did it and we left the tpn behind so she could be tube free. She found seashells, touched a jellyfish, pet some dogs and felt the salty spray and cold Atlantic water as it washed over her feet. So so grateful for this moment in the midst of all this yuck. God is good.