I held off on posting an update about Mathew until Kristen got home.
She flew in last night and spent some time with Mathew before heading off to bed. As always it is wonderful to see her and to see the two siblings interact. Mathew napped in the afternoon and was awake when John returned with Kristen. She flies direct from Ottawa to Fredericton. Whoever drive there to pick her up goes early for a little side trip. John’s older brother and his wife, Alistair and Denise, live in Fredericton so we pop in for a visit and a tasty meal. It is a lovely treat and extra reward for the drive (Kristen being the other reward, of course!!).
It was a late night, probably a bit of excitement over Kristen’s arrival and that afternoon nap. Forgive me if my writing meanders today because I haven’t slept enough to make much sense.
To start, the palliative care doctor has not been in yet. You must realize there are many patients under their care and if Mathew’s pain were a true emergency he would go to the emergency room. Otherwise his referral goes into a queue for a home visit. Right now it is thought the doctor will be here next week. Easter weekend shortened the workweek and moves everyone back a day or two.
Extramural and our family doctor worked hard over the last couple of days to monitor Mathew and adjust the dosages of his current medications. The pain is mostly managed. He is back on 4 mg of Decadron which helps with pain control. The immediate release morphine can be increased to 20 mg (2 pills) at a time if Mathew’s pain level requires it. Given what we know now about his health he received the 20 mg yesterday and slept more restfully than usual.
For the nurse’s visit this week I asked if she would bring her stethoscope and check out Mathew’s chest and belly. He developed a new pain across his front ~ just at the bottom of the ribcage. This discomfort topped his pain list even above the headaches.
No wonder Mathew hurts! The lower half of his left lung isn’t working anymore! The upper half is still working “pretty good” albeit at less than full capacity. On the right lung, the lower lobe also has a reduced air flow. His resting oxygen stat is 91%. When the nurse asked Mathew if he would walk the hallway once his response was typical, “No thank you”. So much for checking his oxygen level while moving! The nurse is arranging for the respiratory therapist… technician?… to come in next week. My task is to “encourage” Mathew to be prepared for that little walk (read plead, beg, cajole….).
In New Brunswick a person qualifies for oxygen in the home when the stats hit 88-89%. It is likely Mathew’s will drop to that when he walks. Make no mistake however, him being on oxygen will not make a difference in his declining health. It will help his short walk to the bathroom. Using oxygen, with its nasal prongs, is the big question mark. Will Mathew even tolerate it? Who knows. With his tactile sensory issues it might be relegated to the “good idea buuuut….” trash can.
Mathew now takes the 75 mg morphine in the morning as well as at night. If you recall previously he only wanted 60 mg in the morning. He worries about the dosage making him sleepy. I did point out that his pattern is to be awake starting about 11 am with an optimum wakefulness from 1-5pm with adjustable parameters. Once he realized this he accepted the additional pain relief gladly.
Rolling on his left side causes Mathew immediate and increasing pain. So at present resting on that side is impossible. I can imagine his organs shifting and pressing on his lung that isn’t working well. No wonder it hurts. This morning was the first time he could roll on his right side without pain. For the last few days the only position Mathew could only lie flat on his back. How many of us stay comfortable for long in that position?
Mathew does not want an Easter basket this year. His taste for chocolate and sweets is lacklustre at best. Money for shopping online is his preferred method of enjoying this holiday. That and visiting with his sister. So he shall be indulged. Stuff he ordered over the last couple of weeks is still trickling in…. soon we will have to wade through his new collectable to get to his bed. Just kidding ~ although where to put this “stuff” is a chore in itself. I think we’ll shift his display shelves by retiring some older items and putting out his newer things to enjoy.
Kristen wants the traditional Easter basket. I hid her stuff deep in my walk-in closet because the damn chocolate keeps whispering my name. I doubt Kristen would settle for a picture of me with chocolate smeared over my face and hands, as an Easter consolation prize!!
Spring arrived. Just. Like. That. Overnight the weather changed. In two days the snow melted on our lawn. In a matter of 4-5 days the lake ice is gone except for a small final piece. I stepped out onto the back deck to inhale spring and surprised two Canadian geese lounging on our backyard. They in turn jump started my heart when they honked their surprise and disgust at my intrusion before flying elsewhere on the lake. Good riddance ~ they poop like crazy! Mathew’s room continues its bizarre microclimate but now the window is cracked, letting some of spring inside to cool the temperature down.
Kristen and I step out this afternoon for our hair appointment. This time as an added treat we are getting our eyebrows waxed. Nothing like wax ripping hair from a sensitive area on the face to start the long weekend! Seriously, I can’t keep up with errant eyebrows hair trying to travel elsewhere on my face. Another joy of being in my 50s. As a famous witch once cried in glee ~ “I’ll get you my pretties!!!!”
Happy Easter everyone. May this weekend bring great weather to enjoy the end of a long, looooong winter.
(p.s. I’m too tired to review my “piece de resistance” above. Or even figure out how to put in the appropriate accent for the “e” in piece. So edit on my behalf and do be kind! Thank you)