Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Wonder Woman, Vol. 1

Wonder Woman, Vol. 1

My dreams the night after Rima got her transplant consisted of me reliving the day and seeing her in the ICU sedated. I must have woken up every hour thinking I was back in the ICU by Rima's side or in the ICU family waiting room. I woke up around 8am. The night before the ICU nurse said they were going to wake her up around 10am, so my plan was to arrive to the hospital around 9am, just in case. I maybe got three hours of sleep. I even self-medicated, but I guess if your brain won't shut the fuck up then there's not much that can help it. On my way to the hospital I was mentally preparing myself for the day. For the last year or so I had been researching all about double lung transplants. I had reached out to the reddit community, asking specific questions about the days following the transplant and what to expect. I had read and heard about each end of the spectrum. The amazingly fast recoveries and the long difficult ones with multiple complications. 

Rima is the toughest woman I know. So she had that working for her. But I'm sure even the people who had a difficult time immediately after the surgery were also extremely strong willed people. I had read that lots of people don't remember the first couple or few days post transplant due to all the drugs and trauma. I had figured that Rima would probably not remember the first day but for sure everything else following. I had read about people having the breathing tube stay in for 4-7 days post surgery. People going back into surgery after sudden complications like a collapse lung, internal bleeding, immediate rejections, etc. I had prepared myself for the worst. I like to be fully aware of all the possibilities no matter how horrible they could be. Ignorance is not bliss in my book; it's foolishness and weakness. Life is scary and full of unexpected events and occurrences. Pretending everything is going to work out your way just because you think it should, is creating a disservice for your future self and your loved ones. Accepting that shits going to hit the fan at some point for you will lessen the blow when it does. I'm fully aware the shit will hit the fan for us at some point, the odds work in that favor and if it does not then we are the few fortunate and lucky. 

At the same time I was also trying to visualize a healthy and happy Rima. This was what we had been waiting and working for, for the last year. This was happening, Rima had her new lungs! I got to Rima's room in the ICU around 9am. Her new ICU nurse (day shift) told me they would wake her up around 11am. Cool story brah, I thought to myself, I could have gotten a little bit more shuteye, but probably not. Rima was laying in bed almost exactly how I had left her hours ago. I wondered what she was dreaming about or was it all blackness. I wondered if she knew she had new lungs or if she was somewhere far away from here floating through some dark space. I stood next to her for a little and then a nurse got me a chair. At around 10:15am the nurses starting to work around Rima preparing her for her long awaited wake up time. I took this opportunity to go grab some coffee and some fresh air. The nurse said to come back around 11am. So I grabbed some coffee and sat outside in a courtyard area.

 Sleeping beauty

Sleeping beauty

 Lung drainage 

Lung drainage 

I was in the middle of updating family and friends on Rima's status when I heard a loud quacking sound. In the courtyard enclosure there was a mama duck with about nine ducklings. The mama duck was up on a short wall quacking urgently at here baby ducklings to jump up to where she was. Unfortunately the wall where she was standing overlooking her babies was a bit to tall for them to reach. Each of them were trying to jump up to her but were missing the top by at least four inches. The mama duck in frustration was going from one side of the walled courtyard to the other in hopes one side would be shorter. I watched this dance of hers for a few minutes until I tried to intervene and "chase" her out of the courtyard with her ducklings where there was no wall. But like the protective mother she was, she ran at me when I came too close. 

 Mama duck with her ducklings 

Mama duck with her ducklings 

 Too tall for them!

Too tall for them!

 reunited!

reunited!

 View of the hospital from the courtyard 

View of the hospital from the courtyard 

If anyone had been watching the next twenty minutes would've been very amusing, I'm sure. I was trying to rodeo a duck and the ducklings to waddle out of the 3/4 walled courtyard. The whole time I was thinking about how Rima would have handled this situation and how proud she would be to hear that I was trying to help a duck and her babies. Finally, after looking like a complete crazy person talking to the ducks and telling her to move she waddled out of the courtyard and was reunited with her babies. I finished just before 11am. I headed back to the ICU with a smile on my face. If anything bad happened today at least I knew I did something right before noon. Back in Rima's room the nurses had finished the process of getting her up. They said she would be awake shortly. I stood next to her bed eagerly awaiting the first signs of "life".  

 so many tubes and wires 

so many tubes and wires 

 Leg compressions to help with swelling 

Leg compressions to help with swelling 

 wires galore! 

wires galore! 

She began with moving her hands and then arms. She was still tied down with restraints to make sure no pulling of the breathing tube would occur on the ICU watch. Her legs jerked a few times and then the nurse came over and started to talk to Rima. Her face was pretty swollen and her eyes had taken the brunt of it. So when she tried to open her eyes it was a very small slit. The nurse told her she was in the ICU and that she got her new lungs. She said that she was doing great and that I was with her. One eye opened as much as it could and saw me standing next to her. I brushed some hairs off her forehead and told her how proud I was of her and how much I loved her. To be honest the next hour or so is kind of blurry to me. I know that the staff was checking her stats often and making sure every tube and wire was working correctly. I could tell how uncomfortable Rima was. I mean who the hell would be with wrist restraints and a tube down their throat?!

The first couple hours were pretty difficult. I was telling Rima about how great she was doing and how amazing she was. Her eyes were shut almost the whole time but she was definitely awake. At around 1pm she took my hand in hers while I was standing next to her. She flattened my hand so my palm was facing her. She then proceeded to try to write letters with her index finger on my palm. She was trying to tell me something. I swear this is where I basically almost lost it. Imagine yourself in my shoes for a moment. Your loved one, sister, brother, parent, child, friend is intubated in a bed next to you. Trying to communicate with you by spelling out one letter at a time on your palm. Each letter making up a very important word or words they're trying to ask or tell you, but you have no idea in hell about what letters they're drawing out. I made out a C out of maybe 10 letters. Frustration at not being able to understand or see what she was trying to write was boiling up inside of me. Just imagine the complete frustration and disappointment. 

I kept saying, "I don't know what that letter is, try again" or "Shit, I have no idea what you're writing I'm so sorry Rima". She was also getting frustrated with me. She kept shaking my palm and drawing the same letters over and over. She would wave her hand over my palm as to single start over and try again. Tears were bubbling up right behind my eyes, ready to pop. "WHAT THE FUCK LAIMA, BE BETTER!" I was screaming to myself. How was I not able to tell what she was trying to say? Finally the genius she is, Rima gestured writing in midair. YES, of course...she can write to me on paper. I'm an idiot! I ran over and got a pen and paper and clipboard. I ran over to Rima and put the pen in her hand and tapped the tip on the pen to indicated where to start writing. 

"What day is it?????" Was her question, with about five question marks. I said Monday the day after your surgery. She threw the pen down on the paper and sorta did throw her head to the side like she was exacerbated or annoyed at the answer. I don't know why, I asked her about it a few days later and she does not really remember it. The following few hours consisted of multiple questions written to me from Rima. She even requested that I adjust her left ear at one point. It was folded under her head and she lay. She actually asked this twice! She was mentally there. She used the word "adjust" instead of fix or just left ear.  She even made me ask if a certain nurse was new. This was super embarrassing for me. The nurse was working around Rima making sure her tubes and wires were working correctly. She must have pulled or pushed something the wrong way. Rima wrote "ask if she's new" I paused for a few seconds and then she tapped the pen on the question sharply a couple times. Meaning ask her, now! So I did..."ahhhh...excuse me.....but....ummm.....so, she (pointing at Rima) want's to know if you're.....ah.....new.....?" My face was turning red. Rima turned her face slightly to the direction of this nurse who now had a giant spotlight on her. "Yes, well to this wing I am." She responded. 

 Asking to adjust her left ear

Asking to adjust her left ear

 I told her about the ducklings, she thought I picked them up...

I told her about the ducklings, she thought I picked them up...

 We had communication cards, but her eyes were closed so they would not have worked

We had communication cards, but her eyes were closed so they would not have worked

 Her explaining where some pain was located 

Her explaining where some pain was located 

She went on more about what ICU unit she came from and then walked across the room to the computer station. I took this opportunity to ask Rima if she wanted me to get "rid" of the new nurse. She shook her hand as to say "ugh, no whatever, it's fine." From that point on whenever the nurse came into Rima's tube and wire proximity Rima would open up one eye and just peek at the nurse to make sure she was not pulling or poking anything that would hurt. This also meant I had to be on high alert. I was Rima's eyes and did tell the new nurse a couple times to be a little more gentle with the tubes. Rima didn't get a brain transplant that's for sure. At around 3pm they took out Rima's breathing tube. For the last couple hours before she had asked and demanded on paper that it come out. The doctors checked her out and said it was good to go. This was super impressive and very good for us. Some people as I mentioned earlier have to have the tube in for days if not weeks, depending on their situation. Rima was already kicking butt. Not even 24 hours post surgery it was coming out! 

The breathing tube extraction was not a fun thing to witness. I wasn't grossed out, like I said I've been preparing for this for over a year. I've watched many YouTube videos if people going through this. I just was having a hard time with Rima's expressions. She was very uncomfortable, in pain and annoyed it was taking so long. I got it on video, the tube coming out. Part of my job was to document this whole thing, the gross and the uncomfortable. I knew we would want these pictures and videos for the blog and our own personal show and tell between friends and family. The tube was pulled out and machines were beeping, nothing bad just beeping notifying the personnel that it was no longer in a body. Rima did throw up a little, which the respiratory nurse who pulled the tube out said had never happened to her before. I was filming at this time but my face quickly turned toward the nurses direction and I asked if it was a bad thing that she threw up a little. I didn't really get a yes or a no, more of a "ahhh well, I'm not sure." It took all the strength in my body and willpower to not stride over to the woman and shake her yelling "that's not an acceptable answer, call the doctors!" 

 About to be free from the breathing tube 

About to be free from the breathing tube 

 Sleepy kitten 

Sleepy kitten 

 Yeah, she's in pain....

Yeah, she's in pain....

Luckily there were a few people in the room and they assessed, it was fine and agreed nothing major was wrong.  They suctioned her mouth a little and then gave her a mouth sponge to refresh her a little and then took off her wrist restraints. Once things settled around her I went and stood next to her. She had me take some funny photos to send to our brother. Haha, she was doing great! About forty minutes after the tube came out PT came by to get her to sit up and sit in a chair. Eric, our favorite PT person was the same one she had when she was on the 6th floor for about three months this past winter. We were very happy he was going to be by our side again for this. Trust is very important and when it's already established it makes things easier, especially this process. If we had, had a bran new PT person I don't think Rima or I would have been very keen on them pushing her so much. But Eric knew how strong she was and what she was capable of. They had already talked about her ICU days back in the winter and how he was going to push her because he knew she could do it and it would mean her getting out of the hospital sooner. Thank you Eric for being a beast! 

Eric had her hug her lung pillow and with his colleague they sat Rima up and got her over to a chair. There were SO many wires and tubes to maneuver and untangle to make this possible. Serious props to anyone who does this on a daily basis. It was giving my OCD some serious heart arrhythmias. Rima was such a trooper and sat in the chair for over an hour. She was in some serious pain and discomfort but pushed through it. What a freakin' beast! Wonder woman was impressing everyone. Not even 24 hour post double lung transplant did she not only have the breathing tube taken out but she was also sitting up in a chair. Her eyes were shut for almost all of this but her brain was working just fine. Anytime she overheard a nurse or doctor talking about something to do with her or drugs she asked or made me inquire to  make sure everything was kosher.  

 Starting the process of getting her up 

Starting the process of getting her up 

 Sitting up! 

Sitting up! 

 Standing up!

Standing up!

 Sitting!

Sitting!

While sitting in her chair she even began doing her breathing exercise; incentive spirometer and Aerobika. The incentive spirometer help expand the lungs by making her take deep breaths in. The goal is to keep a little dial up in the air as long as possible. The Aerobika is sort of like a flutter in that you breathe out into it and it shakes things up in your lungs helping you cough things up. The doctors told us they wanted her to do these breathing exercises at least once at eight times each every hour or more often.  Basically the more she did them the better it would be. Like the true champ she is she did them in the chair even tough you could tell by her face she was so not into it and was in a lot of pain. After sitting for over an hour they moved her back into the bed and she tried to take a nap. I want to say she napped on and off for about 3-4 hours. At around 10:30pm Rima requested to brush her teeth in bed.  Her oral hygiene was not going to suffer even after a massive surgery even with having every excuse under the book to not give a flying hoot about brushing her teeth. She attempted to do it herself but after about fifteen seconds she stopped and pointed at her mouth for me to take over. 

 incentive spirometer

incentive spirometer

 Aerobika

Aerobika

 Cheesin' hard 

Cheesin' hard 

 monitors 

monitors 

 all the monitors!

all the monitors!

I was trying not to hurt her, I wasn't sure how much pain she was in around her gums our mouth so I brushed on the more tender side. Boy did I get harassed about my "brushing skills" apparently I brush like an elderly woman and it's a wonder I don't have stinky breath all the time. To my defense I didn't want to be aggressive and hurt her and get shit for making more pain for her. No winning in this situation. At around 11:30pm Rima told me to go home. I left unwillingly, but aware that I needed to get some rest or I would be no good. The next few days were going to be very long and hard but very rewarding. I needed to be ready to be there for all of it. That night I self medicated, but clearly I need to up the dosage because it did diddly squat. The same thing happened as in the pervious night, I would start to drift off to sleep and my brain would realize this and then snap me back to reality. Cool, brah, coooool. 

To be continued on Tuesday, tomorrow.  

 

Wonder Woman Vol. 2

Wonder Woman Vol. 2

RIMA GOT HER AIRBAGS!!!

RIMA GOT HER AIRBAGS!!!