Wonder Woman, Vol. 4 — Lung Story Short...

Friday May 19th, was probably the most low-key day we had during Rima's hospital stay. When I arrived in the morning she was in a lot of pain. She said her pain was at an 8 on the pain scale. The ON-Q team came in and administered more pain drugs through her back catheters. We were hoping that her pain would get more tolerable by 10am. The PA who was from the surgical team who was our guy came in to check on Rima's remaining three chest tubes. He said all were draining still too much and maybe one would be pulled out in a couple days. The tubes that were still left were: pericardial chest tube, lower left lung, lower right lung. He was estimating that the top right lung chest tube would be the next one coming out.

That day I helped Rima move to and from the chair to her bed as often as possible. She went on a walk with a member of the PT team around mid-afternoon and walked about 150ft. Her feet were very, very swollen. It was really hard for her to walk or stand on them. She said they were quite painful and uncomfortable when all her weight was on them. We had her elevate them as much as possible and she had them in the leg pressure thing machines almost all day. She did her breathing exercises and did sitting leg PT exercises. We tried to watch some movies but her room was still very popular so there was always someone coming or going from some medical team or a nurse.

I might have forgotten to mention but a day or two before this Rima was finally open to putting on her glasses. When I put them on her face she did not believe me that they were hers and made me prove it to her that they were indeed her glasses. She said her eyesight was still very blurry with them on her face. We spoke to her pulmonology team about this and they said they would send in someone from the optometry team to check it out. Apparently the anesthesia and pain meds and being in a lot of pain can influence your eyesight. They were sure it would get back to normal once the pain and drugs wore off a little more. But just to be safe, of course they put in an order to have someone come in a couple days.

Saturday May 20th, was a better day for Rima in regard to pain control. We went on a walk in the early afternoon and she walked 300ft even with her sausage feet. Now don't think I'm mean or anything Rima started to call her feet by this name due to them swelling so much. This girl even had cankles. Every time I looked at her legs they reminded me of my high school French teacher, who I hated, the feeling was mutual I assure you. She had cankles...karma my friends. She was a fridge specimen of a woman. I digress apologies, back to the main character. A member from the optometry team came in after her walk and checked out her eyes. He suggested some eye drops to help with the dryness but assured her that the blurriness would go away in a few days. This was something I had not heard about even with all my research. Eyesight issues post surgery. I mean it makes sense. But FYI to anyone who is going to go through this, it's a total possibility but not alarming.

She walked again at around 4pm for about 300ft. Even with cankles...ha! Listen, if you can't laugh during hard times in your life then you're doing it wrong. Or at least that's just my personal opinion. Life is already super serious and some day's yes laughing is inappropriate. I had a few of those days right after the surgery. It was a happy time because of the amazing gift Rima had received but cracking jokes left and right were not on my agenda immediately. Now that Rima was a lot more with it and improving with each passing day may it have been slow and steady the jokes could come out of the closet, slowly but surely. Laughing was painful for Rima, duh, I mean she had a huge incision across her lower chest. She had tubes coming out the same region. Laughing after an intense gym day is painful. Unfortunately once you get the two of us going its hard to stop.

walking in honor of her Great Strides team - 65 Purple Petals

We had to watch some serious documentaries because watching anything with a slight whiff of comedy was a recipe for disaster in terms of pain for Rima. Unfortunately or fortunately depending on if you're a glass half full or half empty sort of person her swollen chub, chub feet were a source of amusement. She was fully participating in the jokes. To snap her out of laugh attacks I would have to reminder her of the five dead ducklings we found a couple weeks ago on the side of the road as we were on one of our roll n' strolls. Yes, we came across five very flat very pancake like baby ducklings. It was so sad. Very sobering. So, when the giggle monster came to us one of us would bring up this scene and it would snap us out of it. Now if you did not have the context of this story like I'm sure many of the nurses who were in and out of Rima's room; you would have thought we were crazy. I can only image one of the nurses telling her friends about her work day and saying "These two women would talk about dead ducklings to stop laughing about my patients swollen feet to stop calling them sausage links..."

Sunday May 21st, was not super eventful. Which I'm sure we all were grateful for. She walked twice that day, 300ft in the morning and then 300ft in the afternoon. Rima's pain was under control which put a huge smile on all our faces including the staffs. Rima and I decided that even with our laugh attacks that caused Rima pain that we wanted to watch one of our favorite movies, Forest Gump. This is a movie that no one should have to watch with the two of us. Unless you would rather listen to us quote it throughout the whole movie and in voices. Yes, ladies and gentlemen one of our goals and we're pretty good at it is to be able to quote that movie to no end and in the voice of Tom Hanks in that particular accent, including all his intonations... I think our mom contemplated disowning us not even twenty minutes into the movie. We eventually had to stop watching the movie, due to not being able to control our giggle fits at hearing each others renditions of Bubba Gump's sayings. " Lieutenant Dan...Lieutenant Dan...ICE CREAM..." pushed us over the edge.

anti-rejection pills and other such meds made into liquid form to be put through her g-tube instead of taking an hour to swallow them.

that's the face of annoyance with being uncomfortable 24/7

Monday May 22nd, was a big day in regard to Rima improving with her balance and walk assistance. She walked three times that day! Morning 600ft, afternoon 525ft and evening 400ft. Three walks in one day and ALL WITHOUT A WALKER. She was walking all by herself with zero assistance. She was a week out from surgery and killin' it! My mom and I were so proud of her. I mean we have been the whole time but this really pushed the proud bar even higher. In the early evening she had to get her wrist iv redone. This was because her tacrolimus levels were low. This is one of her anti-rejection drugs she has to take forever. The first few days she was on the drug through IV drip. Once her tacrolimus levels were stable or therapeutic they switched her to oral pills. But then a couple days later her levels were too low so they had to switch her back to the IV drugs to bring them up. This is normal trying to find the sweet spot takes time. Everyone's body is different and especially with CF patients their bodies absorb things at different speeds.

Rima had been having issues with hand ivs this whole time. She has a port and has had one for years. That's her preferred access point when it comes to blood draws and ivs. Post transplant she had two hand ivs. Each time drugs were administered it caused her pain due to vein irritation. They came in with an ultrasound machine to find the best vein and to put in the iv. All this sticking and poking would drive a normal person up the walls. But Rima ever cool and collected just shrugged this off with minor eye rolls. Tomorrow Rima would have her first "mini" Bronchoscopy since the transplant. They were going to check out the connecting area where the new lungs were attached and make sure that area was stitched up tight and there was nothing concerning. They were also going to take some samples and see if they would grow anything from the cultures aka if there were any infections.

Every night before leaving I would try to get Rima as comfortable was possible. Even though we both knew she would be uncomfortable with in minutes of me leaving and need another adjustment. Or have to get up and go to the bathroom due to all the liquids they were pumping her full of. The nursing staff was incredible. We were so lucky that Rima had already bonded with a few of the nurses and was able to request certain ones. They were so patient with her and did everything they could to make her as comfortable as possible. Having a good or great nurse is never overrated or under appreciated. Or ones that giggle along with your antics.

To be continued...