I am not a fan of Tuesdays. Just not a fan. And I believe that Tuesday doesn't care for me either. There is a karmic list somewhere that entails all of the ugly Tuesdays I've endured. Sometimes it's a litany of little things. Other days, it's one big thing that shifts my heart from a waltz to a mosh pit. This week, the Tuesday shifted me from complacent and determined to sobbing on the phone to our Hospice social worker.
I've been racing home every day because our gracious caretaker is staying past her predetermined time until I can get home. Until Grandma Linda gets better, there's no one who can stay with Libby until I get home. Tuesday is usually shower day. Showering Liberty is generally a time fraught with little dangers. Because I have slipped a few times barefoot, I have special shoes for showering and Libby pooping; I call them my shower shoes. Just getting her into and out of the shower area is dangerous. Keeping her safely on her shower chair is dangerous. Not getting her body dried off quickly and completely is dangerous. Holding her on her potty chair so that we can change the dressing on her feeding tube, get deodorant, bra and t-shirt on is dangerous. On alternating days, forcing a poop while on the potty chair is dangerous. This involves a blessed suppository before we get into the shower- keep that in mind.
This Tuesday was a double-up day: shower and potty.
This Tuesday, Liberty was stiff- very stiff. If she wasn't smelling so icky, I would have postponed the shower due to this stiffness. (I do bed wipe-downs between showers.) We made it through the shower. Got dried off. Got her onto the potty. Got her deo, bra, and shirt on. ((Deep breath)) Went to cut the dressing and tape off of Libby's feeding tube and the whole damn tube popped out. This happened simultaneously as Rachael was wheeling Grandma Linda into our house.
I tried to push that tube back in. I folded that little anchor balloon and tried to save the tube. Keeping the feeding tube has been so important. This is how we have been getting the liquid meds and tinctures into Libby. This is how I have been getting more liquids into Libby. This is how we have been able to give her the much-needed high caloric formulas.
In my mind, I politely asked for Rachael to join us in the bathroom. I was also calling our Hospice nurse who was in an intake and didn't answer. I called the Hospice Social Worker which is when I broke down. I knew that we would not be replacing this most vital tube. It has been a lifesaver for us. Some days Libby swallows liquids very well and other days she chokes. That tube has been a blessing. Now it is gone. I ugly sobbed on the phone while trying to dress the quickly closing hole in her belly. This whole time, Libby is looking at me so weirdly as she doesn't really know what is going on, except that she needs to poop NOW. This dual-purpose bathroom visit is carefully timed. Very carefully timed.
By the time I got off the phone, it was DEFCON level three for Liberty's potty time. So my shower shoes, old running shoes, became truly SHIT SHOES.
Good thing we are washable. R.I.P Tummy Tubaca
We made a few more calls and discussed for the next few hours and decided that we would not be replacing that tube. I believe her body rejected that damn tube and spit it out. Libby has been pulling and fussing with it. Sometimes she has even grabbed at my hands while feeding her through it. I pray we can continue to add additional calories without the tube. So far, we've been doing good with the additional little feeds throughout the day.
This Tuesday literally shit on me and metaphorically on Libby. Little laugh before we continue
Now on another battlefront, it is looking like Liberty's baclofen pump will be refilled next week. Her pump refills have been every six months at Cook's Children's in Ft. Worth. That may be too far for Libby to make it in a car. Then I thought, okay, we can switch to pills. It's a terrible transition from pump meds to pills. There is the element of the ugly detox as well: big difference between meds through your whole system than meds through your spinal fluid.
Then there is the cost. We have an appointment here in Amarillo on the 15th, but the funding is an issue. We are talking several thousand dollars. It is magical what a call from our BELOVED Dr. Hottie, Dr. Acosta, and our Hospice Care team can cure. That is how we got the appointment on the 15th.
Praying for this appointment to go through. Wait, I almost forgot the kicker- her pump has an internal alarm. This will start beeping on Wednesday. That's right, her belly will be beeping at us.
I cannot express the amount of disparity in my emotions. These last few days of this semester are so important and I will be grateful when we finish this semester just as I have been blessed to get to school most days. Hoping for the very best non-Tuesday days ahead.
Whatever is going on, you are enough.
