I thought I knew what I was getting myself in to. And yet…

This is so much harder than I ever imagined.

Sue had warned me about hitting wall and doubting my decision. Most, if not all patients, do. After all the research, interviews and prayer, I didn’t see how that would be possible. But earlier this week I definite crashed into that wall. “What have I done to myself?”

I have no clue how I managed to write the first update. Today is the first day I’ve felt able to tackle this. Just FYI: I blame all typos on medication.

In an effort to make it easier (for me), I’ve gathered the text messages I’ve sent.

Wednesday, April 4

Sat up in chair for 1 ½ hrs (with no readable blood pressure). And I GOT MY HAIR WASHED!  Fighting a fever today, so lots of deep breathing. 5:00 on has been a little rough. The fever didn’t want to go to divorce court…. Having my first food trickle (protein going into the G tube) and I think this is what they meant by having some cramping… Going to go for now. Having some pain.

Thursday, April 5

Despite not sleeping last night, I was able to get up for about 45 min. Taking Tylenol to control fever which hasn’t gotten above 100.5 today yet. Broken out in a rash, so trying to get that cleared up, too. One step forward, three step backwards.

Friday, April 6

After my 7 AM to 9 AM sleep session this  morning, something woke me up. I called in one of the aids and asked her to make sure the Foley catheter was draining. Let’s just say the Bard team got the following message, “If I hear one person tell me, ‘Honey there’s urine in the catheter. It is draining,’ I might hit someone. Just because there’s urine in a Foley does not mean it’s draining!”

About a half-hour later the head of PT came in my room after hearing that I tried to get a hold of him yesterday. Since he was bothered with the catheter drainage the first time we met, I put him to work. Seth has 10 years of experience of working with spinal cord injuries at The Rehabilitation Institute of Chicago. He’s very knowledgeable. I wanted to ask him about a cycle I’ve been seeing. I sit up and move a little bit, and then I crash (fever, pain, shaking) the rest of the day/night. I’ve not slept well the past two or three nights. He explained that because people with spinal cord injuries are in a constant state of fight or flight due to autonomic dysfunction. This is nothing new to me and have experienced it in the past. But it was a good reminder and he encouraged me take it easy.

He spoke with Sarah who spoke with Megan who spoke with… and with everyone’s input, they thought it’s time for me to give my body/brain a rest. So I took a Xanax. And that basically did nothing.  I added Valium into the mix, and I slept for the first time comfortably in several days. And no increased fever today.

The days when I am “crashing” are the days I really just need some good rest and I’m not able to get it. So for the next couple days, Xanax and Valium are the drugs of choice to give my system a rest. The pain management doctor will also consult tonight and possibly changing meds. The Dilaudid makes me hypersensitive to everything. Noise. Movements. Even temperature.

Well, I’m sure that was more information that you needed to know! Pray for a good night’s sleep. Actually, pray for good nights and days of sleep. A new show on Amazon was recommended, so might binge on a show the next couple hours

Saturday, April 7

Slept great but AD (autonomic dysreflexia) is here with a vengeance today. I took the Foley out this morning hoping that would help, but not yet. Now I have to wake up to cath. But anything is better than AD.

As to not worry you, my blood pressure is not over 100, but I’m sweating, clammy, goosebumps. My heart rate has been high (100-110) the whole week. It’s exhausting. Trying new combo of meds in a bit. Valium with an IV boost if demorol. The anesthesiologist thinks it might be a good fit since I have a tendency to go into shaking fits when I’m in pain. He said it works really well for shaking.

Won’t be trying demorol again. I feel like I’ve been hit by a truck.

Sunday, April 8

Popsicle Day.

Tuesday, April 10

Overdue update… Up. Down. Up. Down. This isn’t getting easier yet. Yesterday we finally got the cycle of autonomic dysreflexia – the sweating, chills, goosebumps, etc. – under control with a combination of Torodol, Benadryl, Valium and Tylenol. And then my blood pressure was 60/39 this morning. So that was discontinued. I’ve been sweaty, in pain, and a little bit of everything today. I did get to my chair and push down the first floor again. Yesterday I  actually pushed down and got to sit outside for a bit. Tried getting back into my chair this afternoon and the PT was adamant I had to transfer. (I have tubes coming out of my body and the thought of sliding – on a soft air mattress – has had me a bit obstinate to say no up until today. It was was rough. I still hurt. I’m wondering if I should see if I can go to a week of rehab when I’m back in Louisville, or if just having someone every morning and every night will be enough. The central line was taken out yesterday. Tomorrow I get real food! Except somehow nutrition flagged almost every item on the menu saying that I’m allergic to it. The dr and nurses are working on it. I’m looking forward to scrambled eggs, potatoes, toast and orange juice in the morning. Pray for endurance and the ability to keep pushing forward. I’m already tired of hurting and pain and fevers and sweating.

Friday, April 13

Friday update. I’m sitting in my chair right now. Shivering, as usual. My temp is only 99.5. Just continues to fluctuate. All the blood cultures came back normal. Been able to eat food OK. I’ll be the first one to admit that it’s not been very much. TPN was discontinued today. So now it’s all up to me. My transfers are getting much better. That’s the only physical sign I can see of improvement. So I’m clinging to that. Others say I’m looking and doing better, but I’m not quite with them yet. I’ve gotten to talk with a few patients they said there is a big difference between week two and week three.

Bad news… Near the rectal drainage tube that I have (TMI, I know), I’ve developed a small Stage II sore. They brought in a wound care doctor just to be on top of it and hopefully we can prevent and correct any of the breakdown. Can’t take the tube out yet because it’s still draining. This is probably my biggest fear. I had no clue they would put a tube in my skinny butt! I still can’t quite tell where it is – no worries – I won’t show you the picture. I’ve pushed outside twice today. The sun is glorious. I can only be away from the machines for 20-30 minutes, though, so it’s never quite long enough.

Saturday, April 14

Last night was kind of rough. I felt fairly decent yesterday evening. Good enough to rent The Greatest Showman on Amazon. About an hour after going to sleep, I woke up really sweaty, but confused and couldn’t figure out what was going on. Whoever the poor nurse was answered the call light probably thought I was delirious. I was drenched in sweat and knew something was wrong. And then I could hear the suction of the drainage tube. The drainage tube came out of the stoma. Had to redo the dressing, change the sheets and gown.

I have upped the ditropan for my bladder to twice a day. My bladder has been very angry the past few days, to the point of leaking (which never happens). The medicine has helped. Not completely, but quite a bit.

Today has been good. That’s a pretty big statement right now. I haven’t run a fever (taking Tylenol regularly). Although I have been shivering. My mom, Gayle and I (and my IV pole) went for a walk over to the water. The sun felt so good that I didn’t want to come inside. But… that darn suction machine. I sat up for well over four hours total today. Having to balance sitting up with getting off my tush to relieve some pressure. I also ate fairly well for all three meals. Hoping for a much better night tonight, but grateful for a decent day.

On Tuesday there will be a “changing of the guard.” Gayle will head back to Louisville, while the Third Musketeer, Ellen, will be joining my mom. I can’t tell you how thankful I am that Gayle has been able to be here the past 2 1/2 weeks. She’s been a huge support for my mom, as well as myself. On most days they’ve been here up at the hospital from about 10 until 6. She and my mom went to a flea market last weekend, saw a movie yesterday, then found a restaurant on the beach and sat on the beach for an hour and a half last night. Most days they come in laughing. They get themselves into more trouble than I will ever know!