Well, he did it.
My dad had his stomach removed and is doing great.
His story is just that, his story and so I won’t try to articulate what he went through or how he felt. However, the following is mostly an overview of benchmark goals the first week and a breakdown of how one transitions into eating post-op. I hope this can be helpful to future NIH patients and caretakers. For everyone else, please enjoy my neurotic ramblings.
The surgery lasted approximately three and a half hours, which is amazing when you think about all that had to be done. I mean, he lost an organ in the amount of time it takes someone running really fast to finish a marathon. The amount of time it takes to watch four episodes of Grey’s Anatomy. It takes less time to watch Gone With The Wind. I digress.
After he woke up from the anesthesia, he was taken from the recovery room to his private room.
The biggest accomplishment for the day, other than having an organ removed, was sitting up at a 45 degree angle. Just a note, it was advised he not go lower than 30 degrees (the beds have markers on them). He was most comfortable at a 35 degree angle.
Key points for the day: absolutely no liquids or food. Oral swabs can be approved by the doctor to keep your mouth comfortable. He woke up with a ringing headache and the doctors said that sometimes the breathing tubes used during surgery can create pressure in the ears and cause a headache.
Post-Op Day One
The first goal for day one is to be out of the bed by 7:00 AM and into the chair. Seems easy?
Sitting has never been so difficult.
But, in total, day one he spent about three hours in the chair and then due to the uncomfortable angle of the chair/ pillow combination, decided he’d rather try walking. At around 10:15 AM, he made it halfway down one hall (about 50 feet round trip). But a couple hours later, he was ready to go again and we went one lap around the 3rd NW Hallway of NIH (330 feet). His goal was to spend four separate times in the chair and to get around the hallway corridor at least twice. We followed the rules and met our goals.
Only ice could be consumed this day.
Post-Op Day Two
Day two is a big day…this is the day you get to take in clear liquids. What does that mean? It means chicken broth, tea, sugar free Jell-o. Wha-hoo! Really living the big life.
Liquid intake is limited to 60ml at a time and no more than 200ml throughout the day. Dad stuck to chicken broth throughout the day and didn’t get too wild or crazy.
We shuffled around the hallway five different times (1 lap, 2 laps, 2 laps, 3 laps, 1 lap). He easily spent time in the chair and even watched a little football. He felt better the less pain medicine he had, so they adjusted him down and he felt less “fuzzy”. Hugs not drugs, kids.
Post-Op Day Three
Drum roll please…time for full liquids. This means a protein shake! The first glimpse of real calories.
The goal is to get through an entire 325ml bottle of Premier Protein shake over the course of a day. The only problem is being limited to 60ml at a time. What does that look like? I’m so glad you asked.
It’s amazing that the first few days it can take about 10 – 20 minutes to get through the itsy bitsy medicine cups. In the future, getting down the whole 325ml in 20 minutes will be no problem. But for now…tiny sips.
With all that increased energy, Dad walked almost two miles! They also removed his fluid IV, which means getting all the protein drink down was even more important.
Post-Op Day Four
Since progress was moving along, Dad was cleared for solids.
First up was cream of rice with Benecalorie mixed into it. What is Benecalorie? Again, I’m so glad you asked.
Benecalorie can be added to anything you eat (shakes, mashed potatoes, oatmeal, etc.). Just like Britney was not a girl, not yet a woman…Benecalorie is not a liquid, not yet a solid. It’s a very weird consistency. However, look at what it adds! 330 calories and 7 grams of protein!
When the goal is to get as many calories and protein in at a time…this is gold.
Back to the menu. The cream of rice was less than thrilling so we moved to oatmeal with peanut butter and Benecalorie mixed in. See a pattern?
It takes about 20-30 minutes to eat a “meal” and then you have to wait 30 minutes before consuming any liquids (remember that flushing situation I described?)…then 20-30 minutes to ingest the liquids…then wait…then eat…then wait…then drink…then wait…then eat…then wait…then drink…then wait. In the middle of all that eating and waiting and drinking, add to the list getting plenty of steps in as well as chair time. It’s a full schedule!
Post-Op Day Five
Day five was more of the same as day four. The biggest difference was we found the 7th floor of NIH which has comfy chairs that are right in the sunshine and a great loop to walk around.
Dad and I were able to read in the sunshine and that made a world of a difference for both of us mentally.
Post-Op Day Six
This was a BIG day! The epidural and wound VAC were removed.
Wait, what’s a wound VAC?
Yeah, let’s go to Johns Hopkins for this one…
Vacuum-assisted closure of a wound is a type of therapy to help wounds heal. It’s also known as wound VAC. During the treatment, a device decreases air pressure on the wound. This can help the wound heal more quickly. The gases in the air around us put pressure on the surface of our bodies. A wound vacuum device removes this pressure over the area of the wound. This can help a wound heal in several ways. It can gently pull fluid from the wound over time. This can reduce swelling, and may help clean the wound and remove bacteria. A wound VAC also helps pull the edges of the wound together. And it may stimulate the growth of new tissue that helps the wound close. A wound vacuum system has several parts. A foam or gauze dressing is put directly on the wound. An adhesive film covers and seals the dressing and wound. A drainage tube leads from under the adhesive film and connects to a portable vacuum pump. This pump removes air pressure over the wound. It may does this either constantly. Or it may do it in cycles.The dressing is changed every 24 to 72 hours. During the therapy, you’ll need to carry the portable pump everywhere you go.https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/vacuumassisted-closure-of-a-wound
With the removal of the wound VAC and epidural, mobility is increased because you don’t have to tote a portable pump with you! Up until this point, the pump is placed at the bottom of your portable IV stand.
Post-Op Day Eight
Skipping ahead…day eight – Dad went home!
Isn’t that amazing? The body is a wonder.
Dad is a champ and I could not be more proud of him and his determination to smile through the entire thing.
I just want to take a moment to give a little insight into the caretaker’s life at NIH.
If your loved one is a patient at the NIH Clinical Center, you are eligible to stay at the Edmond J. Safra Family Lodge. Reservations must be made through your clinical program coordinator. But the benefit of staying there versus a hotel in Bethesda is you’re about a tenth of a mile from the Clinical Center. This means you’re able to stay with your loved one the most amount of time.
The Lodge is a beautiful building with nice clean rooms. There are multiple laundry rooms on site as well as a full kitchen, dining room, and living room. The kitchen is built to be communal. When you check into The Lodge, you get a basket with your room number on it. Then you can go to the grocery store (or in my case, Filomena) and store your food in your basket. There are several restaurant sized refrigerators and lots of pantry space for all your items. Anything leftover or extra can be donated to the “House Shelf” and things like mustard, ketchup, etc. are plentiful on the house shelf. There’s also an ice machine, filtered water drip, and coffee maker.
Additionally, several restaurants who have security clearance to come onto NIH’s property can deliver directly to The Lodge or Clinical Center.
I chose to go off site to get take out since once upon a time I lived in DC and craved a couple things (like linguine cardinale and tiramisu). But there are options for days!
This post was kind of boring…but hopefully somewhat informative.
I don’t know about you, but I’m going to go drink a gallon of water while I can. Appreciate the little things.