Goodbye September – It’s Been . . . Memorable

September has been quite a month (although, it is not at all unusual for caregivers to have weeks/months/years like this – and worse - unfortunately).

Enjoying a "normal" day

Let’s recap:

September 1:  Richard, Robert and I decide to go to a movie! The tickets were cheap, the popcorn was pretty tasty and the movie wasn’t bad at all.  What a fun way to start the month!

September 3, 7:00 a.m.:  Richard opens the front door for his routine intrathecal pain pump refill appointment which happens every 45 – 60 days. The puppy escapes and Richard and I chase him back toward the house.

September 3, 7:05 a.m.: The puppy escapes again just before I am able to get him back in the house. (I note that Taz is aptly named.) Finally, we are able to get him back in the house. (For real this time). Richard leaves for his appointment.

September 3, 7:10 a.m.:  Robert and I finish getting ready for work (me); and Day Program (Robert). We wait for Robert’s van to pick him up.

September 3, 7:45 a.m.: Robert leaves for Day Program and I leave for work. The puppy does not escape.

September 3, 2:30 p.m.: I leave work to go to a doctor appointment because I have been feeling dizzy. The doctor thinks it’s vertigo but wants to do an EKG to be sure. 

September 3, 3:15 p.m.:  While waiting for the EKG person, Richard calls me. He is groggy, slurring his words and tells me he’s in the hospital. He cannot give me any other information.

September 3, 3:16 p.m.: I leave the doctor’s office, briefly telling a random person I have to leave (I assume she worked there).  I realize Robert is going to be dropped off after Day Program in about ten minutes and Richard will not be there.  I call the transport company as I am racing home to explain why I might be late.  My phone is about to die so I cannot call the hospital until I get home.

September 3, 3:35 p.m.:  I call the hospital and am told Richard is in the ICU – my heart drops. I talk to a doctor while getting Robert from the van to the house. I find out he was inadvertently overdosed with 40 cc of Fentanyl during the “routine” pump refill.

Oh and no one from the pain clinic, the ER or the ICU called to tell me.

September 3, 4:00 p.m.:  I explain the situation to Robert and tell him we have to go to the hospital. He has to use the bathroom but finishes in record time and we rush off to the hospital.

September 3, 4:30 p.m.: Richard is lying in the hospital bed, completely passed out. Robert quietly sits in a wheelchair working on his puzzle book while I get an update from the nurse. Richard’s mom and one of his brothers come to the hospital; our daughters come to the hospital; our son is calling from North Dakota (acting like a tough guy but obviously scared). Richard’s other brother (who lives a couple of hours away) calls several times then makes the decision to come up.

Yeah, we’re worried.

September 4, morning:  Richard is still in the ICU on an IV of Narcan which is the antidote for this drug overdose. He is able to talk to us but is completely miserable and in pain (his head hurts and his back hurts. Oh right - there’s no medication in his pump since it all went into his abdomen).

September 4, afternoon:  The doctor decides to take Richard completely off the Narcan. Within less than an hour, he is unresponsive and his eyes are rolling in the back of his head. His mom and I (and the nurse) all try to wake him up.  The doctor rushes in and immediately starts the Narcan again. I’ve never seen Richard’s mom so scared.

September 5: Richard is slowly weaned off of the Narcan.  He is in extreme pain and horrible discomfort but there is hope he will get moved to a regular room soon.

September 5, 7:00 p.m.:  The girls and I and Robert leave the hospital to get some dinner. I park in the handicap space but forget to hang my placard and, yep, have a $450 ticket waiting for me when we return to the car.

September 5, 11:00 p.m.: I’ve long since left the hospital to get Robert home and ready for bed. Richard is moved to a regular room. I’m still cursing the dang ticket but am too tired to go online to appeal.

September 6: Richard is able to be discharged! His pain is still awful but the withdrawal symptoms have subsided.

Oh, it’s also Robert’s birthday and our 16^th wedding anniversary. Before going to the hospital, I took a birthday cake to Day Program for Robert so he would have a celebration with his friends. Happy birthday, Robert! Happy Anniversary, Richard!

September 7: I appeal the parking ticket and have charge reduced to $27.95 for “administrative” fees.  Otherwise known as “we want you to remember not to be an idiot in the future” fee. 

September 11: Richard has an MRI dye study done on the pump to be sure it is working properly. He also has the pump refilled to alleviate his pain (by the head doctor). This time, the medication goes in the pump like it’s supposed to.

September 12: It’s Richard’s and Other Brother’s birthday! Richard and I go out to dinner with one daughter (Rachel) and Robert.  Before leaving for dinner, Robert has an unusually long seizure with several minutes of confusion. Richard gets sopapilla for dessert and is a happy guy!  (Robert loves it too.) Happy birthday, Richard and Other Brother!

September 13, morning: Robert has had nasal congestion and a cough for about a week.  I take him to a doctor appointment and she starts him on antibiotics. His chest x-ray is clear.

September 13, (throughout the night): Robert has gone downhill all day so by bedtime, I wake every two hours to take his vitals.

September 14, morning:  We call the paramedics to get Robert to the hospital.  His behavior and symptoms are the same as the last two times he was hospitalized for pneumonia and sepsis.

September 14, later that morning: Robert is diagnosed with pneumonia and sepsis, surprising absolutely no one.

September 14, noon: Robert is transported to a regular room where he goes further downhill.  He is transferred to the MICU.

I let a morbid thought in: can he survive a third bout of pneumonia and sepsis within 16 months?

September 16: Robert is doing well so is transferred to a regular room. I ban all future morbid thoughts – Robert is a walking miracle.

September 17, 3:00 p.m.: I stop at the grocery store after working part of a day and before going to the hospital. I slip and fall and land on all fours (knees and hands).  My ego suffers the most damage.

September 18:  Today is daughter Caty’s birthday! Happy birthday, Caty!

September 20, 5:00 p.m.:  Robert is discharged from the hospital!

September 21: It has been 14 years since my mom died. I think about her frequently throughout the day.  (Truth be told: every day.)

September 26:  Richard’s leg is swollen much more than usual and extremely red.  He is complaining about his vein hurting in his upper thigh. His doctor sends him to the ER where everyone thinks he has Deep Vein Thrombosis.  The ultrasound does not confirm this and he is sent home with instructions to follow up with his PCP and a whole lot of Lasix.

September 29: The extended family celebrates all the September birthdays at our house. There is too much food, lots of noise and even more laughter. Things seem . . . back to normal (if you don’t count Robert’s lingering cough and Richard’s legs still looking like tree trunks).

It’s “normal” enough so I will take it.

September 30, 11:00 p.m.:  I wake up to Richard in the bathroom trying to stop one of his legs from gushing blood. He had scratched his leg and it spewed blood like in a bad horror movie. We finally were able to get the leg wrapped with several bandages and elevate his leg. We decide a trip to the emergency room is not needed but will call the doctor first thing in the morning.

October 1: Hello, October! I don’t know what to expect but after our September, know that we will get through whatever is thrown at us.