Annie: Matt is itching to contribute to blog posts and is excited to express his musings during this time as well as share a bit of how we got to this point.
While we expected to be discharged Monday (5/8) Matt’s phosphorous level was still critically low necessitating a morning IV and a retest at 4pm. Although his number improved at the retest, it was still not enough so that he had to receive another IV lasting into the wee hours of Tuesday (5/9). To those who prayed for improved levels, we thank you. For those who prayed “Thy will be done” we thank you also. The delay in going home ended up being a time of healing and blessing.
Matt and I spent Monday deep in conversation, dreaming and prayer–lots of tears and laughs too. I don’t think we would have gotten around to having some of these conversations had we been sent home as expected. Matt’s diet texture got upgraded from a full liquid diet to pureed food–he ordered a pureed vegetable lasagne and thoroughly enjoyed it! I took on the majority of giving him his PEG tube nutrition feeds, practicing for our eventual transition home.
On Tuesday morning (5/9) I got a text from Matt “3.6!, 3.6!, 3.6!” sharing that his phosphorous number was now healthy and he could go home–the minimum number being 2.0. Over the rest of the morning we met with several providers (tube feeding nurse/supplier, social worker, internal medicine doctor, dietician) who each helped check off an item of the discharge list. Not knowing how soon Matt would have the IV lines removed, he ordered more pureed lasagne. The nurse who bookended our hospital stay came to remove the lines and grab a wheelchair for the trip to the car, but Matt asked if he could stay till after lunch. She took out the lines and said that Matt could take his time eating and call when he was ready to go.
Before Matt ordered lunch, the oncology pharmacist called me to let me know that we were approved to order the medicine. She let me know that it would be $250 per month if we wanted to order right away and that it could probably be less if we applied for assistance grants but that would also mean a delay in getting the medicine. She said that her department would go ahead and “work in the background” to try for any assistance that could be available to us and that if “Melody” called to get more info from us for this assistance, “it’s not a scam.” She asked that we just let Matt’s oncologist know what we decide and when he starts taking the medicine.
I told Matt this information and of course leaning toward starting right away, we still took the time to pray. We thanked God that Matt was approved for this medicine sooner than we expected and asked God for continued provision for our needs and guidance in the way we should go. After praying I did the calculation on a year supply and considered that although it is a chunk of change, it’s going to be okay and Matt echoed that this is not as costly as what some cancer patients end up paying. It was put on our hearts to pray for those in desperate need of provision as well. We planned to go ahead with the immediate order, but decided that we would place it the next day since we were being interrupted left and right for discharge tasks.
When we were ready to go we called for the nurse and she started going over the discharge information and I got another phone call from “Melody”. She told me that she had been working on finding assistance for the medicine cost since it would be $95 a month. My jaw dropped and I said, “I though it was $250!?” She responded, “Oh, oops, I was looking at the wrong thing, yes, it is $250…but…if you’d like we can apply for a copay card and that would bring your cost to $5. Sometimes these applications get approved right away and sometimes it takes a few days because someone might need more information to process the application.”
“Oh my gosh Melody, Matt and I just prayed about this and asked God for provision and direction and He just answered it!”
“This brings tears to my eyes. You’re the third person this week who has told me that their prayer was answered when I gave them their benefit information. I’m a praying person too and I wonder how many people pray and just never tell me when it’s been answered…so you’d like to apply?”
“YES!”
Matt was also approved for the copay assistance card right away and we were able to go ahead and order. Matt and the nurse could overhear my side of the conversation and Matt told me that the nurse had tears in her eyes hearing this too. As she wheeled him out we gave her our wholehearted gratitude and she said, “I’m glad to see you go (wink).”
We got home mid-afternoon and Matt was able to do the 2 levels of stairs from the garage to the main living area and getting settled in with his first home tube feeding turned on more Star Wars. Our dog was ‘gently happy’ to see Matt and was not reactive toward Matt’s use of a walker in the house to help his steadiness as he builds back strength and balance. Matt’s pain from surgery continues to subside and he is getting faster and more coordinated at moving around the house–doing significantly more than when he was in the hospital.
We know we need to pace ourselves and make recovery our priority right now (sleep deprivation, emotional processing, getting used to new equipment and medicines, etc.). As best as I can I’ve been keeping my clients in the loop about restarting therapy (it is my passion and JOY) and they have been exceedingly gracious.
Today, Wednesday (5/10) has been our first full day home. My dad left his snow-birding earlier than he’d planned to come north arriving this afternoon to lovingly support us in this transition. He’s snoozing on one side of me and my cat is on the other side of me also snoozing. The dog is snoozing at my feet and Matt’s on another couch rewatching Star Wars “A New Hope” while I jot down the narrative of the past few day. It feels very “normal” for the moment, but I know that when we all start getting ready for bed we’ll be reminded of the newness we’re experiencing.
Things you might pray about on our behalf: decreased/eliminated side effects from current medications, no side effects from the coming medicine, Matt’s feelings of safety in our home where the seizure happened and release/healing from the traumas experienced, deeply restorative sleep, organization of all the information and supplies we’ve been provided (I’m tracking everything for Matt at this time), my longings to spend time with my horse and start back up with speech therapy clients…whatever comes to mind, and remember to thank God for being present with loving kindness in all of this.
Matt & Annie - Journey 