Getting better!

I’m getting so much better! While I’m still on alternating Tylenol and Motrin around the clock, I haven’t had a ‘big’ pain pill in over 13 hours!! I had been on them ever 4 hrs around the clock. This is HUGE progress!!

My only minor setback was dinner last night. I wanted to be normal and eat with the family and we had Asian takeout. I was careful with ordering but forgot about soy sauce containing gluten so now I’m dealing with the multi day aftermath of a gluten attack. I’m bloated (about 2 lbs worth) and feel very full, but it’s not as bad as it could be. It wasn’t a crazy amount of gluten but it was enough. So the next few days will see me drinking extra water and having mostly just yogurt, Turkey, green beans, and blueberries. Safe, single ingredient things.

I’ve been spending most of my time in bed with some in my chair in my room too. I take frequent walks around the house and have taken a few showers (so good!). The boys have each spent some nice one on one time with me in the bed watching TV and talking. They like to get “rides” when I pump the bed up and down!

My incision is healing incredibly well! It goes from right under my breasts vertically straight down and around my belly button. It’s basically my entire stomach! It was just closed with surgical glue…a LOT of glue! Plus two small side holes where the drains were. One had stitches and one didn’t. The one with stitches feels totally unnecessary and I want to have my mom take them out. So unnecessary! She’s a nurse and we have the proper suture scissors.

Iā€™m HOME!!

After 8 VERY long days in the hospital, I’m so happy to be home and back in my own bed!!!

This is a terrible photo and I still haven’t had the energy to take a shower yet (my hair is beyond gross!!). But,’I wanted to show off a few of my PINK FLAMINGOS! Pink Flamingos being my chosen theme for this next stage of recovery šŸ™‚ Why a theme? Just because! And they’re pink, feathery, whimsical, kitschy, and make me happy! I’m trying to inject as much fun into this process as possible.

Despite not being able to shower yet I am finally in fresh, clean clothes! A pink flamingo nightshift over a light compression tank top (feels better like my insides are help together better), with leggings and pink flamingo socks. The view is better too – I really adore our bedroom! Though it doesn’t usually have a giant TV, this seemed like a the right time to indulge in a little TV from bed.

So now, I rest. And sleep. A LOT. I only finally got true sleep for the first time in 8 days starting last night. The rest of my ‘sleep’ has been extremely light and mostly drug induced. Also, I’m the hospital you’re CONSTANTLY being checked on and poked and prodded and checked.

The worst was this morning at 5 am. I could have slept until 5:30 when my next meds were due which is what made it extra frustrating. A woman comes bounding in with the scale exclaiming “it’s time to get your weight!” Let me also add the context that the room was completely dark and I was SOUND asleep. Also, the bed I was in has a control panel that she could have used to press a few buttons to get my weight. I told her to come back when I was up.

I don’t exactly bound out of bed these days. Getting up still involves a hearty assist from an electronic bed. Super easy at the hospital! For home we bought a mattress genie (from bed bath and beyond…with the 20% off coupon, of course!) and it’s basically an inflatable bed wedge that you operate with a remote – cool!

Mom just got me all unpacked and is making my a dinner snack – an egg with some cottage cheese. Great protein and a welcome change from the hospitals lovely powdered ‘eggs.’ So, my diet now. I’m on a soft GI diet and need to eat very small amounts every 2-3 hrs. High protein, low fiber, soft cooked everything, low fat, low sugar, and no spices yet. I also need to take pancreatic enzymes before I eat anything. Without them, my body won’t be able to absorb the nutrients and I’m at risk for malabsorption and malnutrition from it.

One thing I didn’t realize about the Whipple, is that part of my stomach was removed as part of the reconstruction process. It’s smaller. Like a gastric bypass maybe? I cannot eat more than 1/2 cup at a time. I’ll probably continue (not on purpose!) to lose some weight as my body figures out how to digest and process food. I’m down to 144 lbs. Not too bad, but even I see how thin I am now.

Ok, eggs are ready and it’s time for meds!

8 Days – Home Tomorrow!

Presuming everything continues to go according to plan, I will get to be coming home tomorrow! As you know this has been an incredibly difficult week and I have struggled mightily with pain. The final piece of this puzzle that will allow me to go home will be a switch from an IV medication for pain to the oral version.I have had my first dose of the oral med at 9:30 AM and at noon it is still working well so I am very hopeful! I will be on a schedule with the pain med on top of alternating Tylenol and Motrin. We decided on the schedule because I would wait too long and try to push through the pain and would reached the tipping point before asking for meds which made it much much harder to control.

I did have a pretty shitty night last night though. At 2:40 in the morning I asked for my pain med, as prescribed by my surgeon, and got both yelled at and lectured by a nurse for a solid 20 minutes about how I should not be using this pain med anymore. She argued with me that I could not possibly be feeling the pain I was feeling. She very strongly implied that I wanted to extend my stay in the hospital to avoid going home as well as strongly implied that I may be abusing the pain med. That being said, I have used much less of the pain medication then was even prescribed, and less frequently than allowed. I had also only been on it for two days and it was the first and only thing that was working to control incredibly severe pain. It is also the medication suggested by the pain management team and my surgeon. It was shocking and incredibly upsetting and I damn near checked myself out AMA and drove my self home last night.

She was immediately pulled off of my service and has been dealt with. We are back on track with controlling the pain which should help me go home. When the pain was uncontrolled, I was unable to eat, as well as was still having a hard time drinking due to the thrush. uncontrolled pain also makes it harder to do the thing that helps with recover the most, which is moving around and walking. I’m still completely stunned that even happened.

In any case, I am back on track, doing well, excited to get home, and finally able to eat and drink pretty well. My lunch was some of the sous vide egg bites from Starbucks and a piece of gluten-free toast. It was oddly amazing, LOL!

48 hrs?

Still need to work on dialing in some routines, but I’m getting there. Slowly but surely, emphasis on the slowly. Then surgeon let me know that I’ve passed all the major risk zones so that’s great! The hope is that I might get to go home around Tuesday.

Here was dinner tonight. Well, about 4 teeny bites of it plus a few bites of cottage cheese…but it was good! Todd finished it off for me. Also, I’ve basically moved in at this point!

Same status, different day

I keep hoping I will have some groundbreaking status update to give you. To say I’ve turned a corner or in feeling significantly better and stronger. I’m not. My pain is under better control than it has been, but I still need “the big guns” several times per day. I go a 2/3 on the pain scale to a 4/5 incredibly fast. 5 is my ‘tipping point’ where I known if we don’t catch it and treat quickly, it’ll tip over to an 8+ at lightening speed and take many, many hours to recover from.

I wanted to add that I’m still grateful that I am recovering well, all things considered. It’s the little things right that that are keeping me going. The extra responsive nurse. The thoughtful food services person who brings me ‘extra’ of something even though I can only tolerate a few nibbles anyway (check out the portion sizes!!). The IV nurse who added this little flower and ‘Madonna glove’ to make my IV more comfortable.

Still struggling

Damnit. This shit is hard. The pain is intense. It’s made me rethink future living will/advanced directive stuff. No extraordinary measures for me – I’m not tough enough! If I ever have pain like again, say your goodbyes because I’ll be done.

Pain was better under control for a bit…then it came back. With a vengeance. Lots of confusion with orders. What was on a schedule versus available as needed. Came back after eating. I’ve been able to have real food today (grits, fish, carrots, green beans, yams, pork, pudding, etc) but I am limited to 1/2 cup at a time an after liquids.

I’ve had two major pain experiences today. The first was just before dinner but I don’t remember exactly when. I just know I got IV pain meds at 5 and that helped, but not for long.

The pain started getting bad after dinner and a surprise hiccup I think was also a contributor! I managed to get more IV pain meds at 9:10 pm…but it took over an hour to get the meds order straightened back out and into my system…with an 8 pain level. So bad! Had to page my surgeon, who was Celebrating his wife’s birthday tonight.

other fun odds and ends of the day include drain removal (ouch!!), a blood clot preventing shot in the stomach (every 24 hrs), 3 hallway walk, being given a med that doesn’t work for me in place of one that does which delayed getting help into my system, a gown change, and a huge slice of mom guild pie for not being home for Bear’s 6th birthday tomorrow.

The help and support from family, friends, and work (my boss and his family took the kids all afternoon!) has been humbling and amazing and something I’ll be forever grateful for! I anticipated needing some meals. I had no idea we would need such basic help with watching the kids so that my mom and Todd could be here 24 hours a day for so many days.

I truly hope nobody I know, or anybody really, ever has to go through anything like this. Please, take care of yourselves proactively. Get all of the screenings. See your doctor. Listen to your body. Feel it with good foods and stay away from chemicals. Nothing is more important than your health!

Recovery is hard and slow

I am once again using talk to text with my eyes closed and not having the energy to re-read this, so please excuse all of the typos are places it is confusing.

I honestly believed that by this time I would be feeling pretty good and that I would be going home today. I underestimated this so hard. I think we finally figured out the right mix of meds to keep the pain manageable. Also to keep the nausea at bay. I had gotten into a terrible loop where the pain would cause nausea and I wasn’t able to eat or drink which made me more nauseated which caused more pain. I’ve been fairly stable for about 24 hours now.

In the past 24 hours I have had both drains removed. One of them needed to stitches, which is done without an anesthetic. I have had my IV constant drip removed which gives me more mobility. I have been able to get up to go to the bathroom on my own and to take a few very very short walks down the hall.

I was able to get in my first significant meal yesterday and it was Campbell’s tomato soup. At this point I’m not really caring what I eat just so long as it is something allowed and I am also hungry for it. I have also had two chocolate pudding’s and a few bites of vanilla since I have been here. But the big news is that today for lunch I transitioned to the soft G.I. diet which means I had real, actual food. My first meal was fish with a few carrots.

No really exciting photos right now but here is one of my primary view which is my hospital tray.

Mom and Todd have been great. I have had one of them sleeping here or with me 24 hours around the clock since I was admitted. I didn’t think I would need that kind of support, but I do. The meals people have provided have been tremendously helpful to them. I miss my kids. No visitors under 12 are allowed and I still don’t think I look like what I want them to visit. Area of the hospital I am in is one level down from an ICU so I still get lots of extra attention from the staff which is good. I am in a transition time where mom is sleeping at home and Todd is on his way down and I am by myself. I am proud that I’ve been able to get up to use the restroom and have lunch on my own. But I did drop the call button once and had to walk on my own out to the hall to ask somebody to get it for me because I couldn’t call in.

I am still not sure what the rest of recovery looks like. It really changes our by hour. I’ve heard nurses say that some people will cover in the hospital for a Full 30 days after a Whipple. Apparently this is one of the most complex surgeries anyone could have done. I am certain I will not be here that long, but it sunk in just how serious this is. I do not feel anywhere near ready to come home. And it sucks that I will not be home for bears birthday which is tomorrow. He will be six.