#sicklecellwarriors

🌍❤️Today is World Sickle Cell Awareness Day! Let's come together to raise awareness, support those affected, and work towards better treatment and a cure for sickle cell disease. Every voice counts in the fight against this condition.💪✨

September 25-October 3.2021

Saturday September 25.2021

This was Sunday 2:00 in the morning mom just finished changing my foot and I was watching the golden girls.I fell asleep for a few minutes feeling this awful pain in my lower back I called my dad to tell him that I was having pain and to tell mom but instead I called her. She came over and laid with me rubbing my back and gave me some Motrin, until the next morning…. to be continued

Sunday September 26.2021

This was Saturday afternoon I told my dad I was going to shower while in the shower I wasn’t feeling so good I had to rush and wrap myself in a towel and go sat under the ac because I was feeling very tired and shaking. My mom came in my room and said I didn’t so good, still in awful pain I had a nail appointment that I made last week so I went with mom feeling ok, it took like 30 minutes to do. I got back in the car feeling very tired again, I walked into my house put my stuff down I crawled into bed and continued to watched golden girls I fell asleep again and mom was still rubbing my back. I just couldn’t get comfortable I was moving all my bed.

My mom said do you want to go hospital I immediately said yes it was so hard to get dress my mom helped me while getting the hospital bag ready. I was in so pain it was very difficult to walk so my dad swung me over his shoulders and put me in my mom cars. While driving to the hospital I felt every single stop, bump, and turn in the road. I was crying”. I need relief, I need fast” for me to say that means the pain was sky high. Couldn’t get comfortable always turning and sitting still was so hard in the car.

I got to the emergency room at this point the pain was beyond a 10 more like 10,000 I felt like drawing out of my skin and curling up into a ball until the pain was 100% gone. Once I got in the back and the nurses started an IV for fluids I got strong *pain medication. I would sleep for 10 minutes and right back up balling crying, turning, asking for more relief.

I was being transferred to the 3 floor which was orthopedic floor with a clean hospital bed. I was going in and out of pain in between trying to sleep to the prior medication I was given back at home. My mom was always rubbing my back, hips, and legs. Getting up to use the restroom felt like my legs were set on fire and about to break at any moment. I spent that night and half the that next morning in so much pain and agony.

Monday September 27. 2021

It was the next morning still in was much pain. I did a chest X-ray and take and *nebulizer breathing treatment. This sweet nurse told my mom and I, I needed to be *I.C.U because my oxygen level was at a 45 and had pneumonia, no one on this planet earth should be at a 45. SIDE-NOTE: I cried but I remember when my auntie I wasn’t allowed in the ICU to say my goodbyes because I was to young I was 14 when she pass away from cancer. My body was asking for help and I was transferred to the I.C.U. Once I got into the ICU the nurses put me on the this *high flow oxygen machine. It felt like I was growing in my air the oxygen was going so fast up my nose and the taste was horrible.

I really didn’t have an appetite but I knew I eat something so I won’t have another on my hands. I took a few bites for breakfast, lunch, and dinner. Still coughing, in an *active sickle cell crisis , pain was going on. I was in misery I just wanted home to see my sister.

Tuesday September 28. 2021

This morning I did so much such as go get a *CAT scan, do a *echocardiography and I need to use the restroom today. The nurse get a wheelchair for me, it felt so good to come out of ICU. I did a CAT scan before so I was use to it. I got to my room I made a thumbs up gesture to my mom. A few hours went then the echocardiogram technician came to my room, I was pretty nosey she allowed me to look. I asked questions because I was curious the way my heart sounded when she put on the audio gave me more power to fight my way out of the ICU.

The pain management doctor came to ask how is my pain and have went yet. I said my pain is ok and no I haven’t went he said ok and said that he would make a medical mixture for me. I was ok with that.

For rest of the day doctors and different labs techincan came in my room.

Wednesday September 29. 2021

I sat up the chair cause the bed was staring to get uncomfortable and by this time I haven’t went to bathroom and it was kind of getting painful by I still needed eat still taking a few bites of breakfast and I said to my mom that my stomach was hurting. In the ICU there is a little separator dividing the room in the corner was a toilet. ⚠️ TMI ⚠️ Ever since I was born I suffered and still suffer from constipation. That morning I took the mixture pill with my other medication. Let me tell you when I sat on that toilet it was like WW3 I could destroy the whole of Afghanistan the smell that came out my body could have taken me out. It went on for some time back to back ever for the next few days.

After I went I was so hungry any time a nurse came in and ask me if I wanted anything I said yes I usually got ginger ale and chocolate pudding, I love me some snack pack chocolate pudding.

I want to shoutout to my mom because I had so many wires on me, she did everything for me if you know what I mean 😉

Every hour my nurse came to check on me and my mom and ever 4 hours to me my iv medication and if I needed any pain medication. I started to wean off the pain medication because I didn’t want to get addicted to them but if I needed I would ask politely.

I had to sleep on my left side because I had the pneumonia was in my right lung. So I facing the door to my room I prayed to God basically saying: Dear God, please heal my lung so I can get out of ICU and to be able to see my sister and dad. I know that you can do it I believe in you.

Thursday September 30. 2021

Still in the ICU feeling much still can’t take a deep breath but I was working on the *breathing spirometer that is mess felt like hell. More doctors came in to update me and my mom, they said I looked perfectly fine but my CAT scan and X-ray was showing that I had fluid overload, a small amount of fluid around of heart, and pneumonia.

In my head I was like I need to get out of here. Still working on the breathing barometer trying to cleat my lung coughing like a maniac and sitting up off my lungs.

That night the new season of station 19 and grey anatomy came on so my mom and I watched while I ate my hospital dinner and mom had her dinner. After that I FaceTime my sister as I did ever night in hospital saying goodnight and making jokes I say goodnight and can’t wait to get home to her.

Ever other night my mom changes my wound I had of 10 years now; she was coming to the end of wrapping the rolled gauze around my foot. Around the same time the I got a new night shift nurse she would so sweet and her charge nurse pass her a piece of paper. She read it and wrote on my room board 2258 and said that I was switching floors. At that moment I knew God heard my prayer for the night before I was so excited that I was moving rooms.

My mom stared to packed our belongs and checking the room to see if we had left anything in the cabinet.

Friday October 1 2021

It was barley 1:00 in the morning on our way to the new floor. This floor was called *PCU entering our new room 2258 where we spent the next three days in. I told my mom one day closer to seeing my sister; the nurses slid me over to my new bed which was super uncomfortable. Now on this new floor between 12 and 4 they you sleep which was very comforting to hear.

I really didn’t sleep cause cause there was lab technicians taking my blood and nurses taking vitals sign. Once the sun came up my mom and I started to get up. I had such an appetite I ate all of my breakfast and was still hungry but my mom kept a sash of little snack from previous breakfast, Lunch, and dinner trays that I didn’t eat prior to being backed up so I had my favorite combo ginger ale and snack pack chocolate pudding.

The same doctor from the ICU came up was updated my mom and I still looked fine on the outside but the inside was still acting up. After they left I did so research why are keeping it is because I had a low grade fever due to pneumonia that’s all.

The physical therapist came in to work with me and my limp due to the wound I had and still have for 10 years. I walked the entire PCU floor, basic excise like in and out kicks, stepping in place, hip opener, and muscle resistance.

The more I felt better the more food was on my hospital food tray that night for dinner I had pasta and meatball with ice tea, and chocolate pudding. For the rest of night my mom and I watched tv and was heading to bed.

Saturday October 2. 2021

That morning my mom and I had a mission I was to freshen up, take my meds, let the nurses give me my Iv antibiotic and we were going for a walk on the PCU floor. After all that I decided to sit up in the chair again. The doctors came in and still I was feeling better but the x-rays were getting clearer still had pneumonia but I since couching and using my breathing barometer is was getting better. They wanted to still keep me over night to watch me for any fever spikes.

The fever spikes will only happened at 12:00 in the night so they still concerned about that. Physical therapist came to walked me and this time I didn’t even realized that I walked the over floor I was going my speed like yesterday but it seemed faster.

My dad stopped by to give me some really pretty flowers and to relieve my mom so she can go home and freshen up and checked on to my sister. My dad and I went for a walk and by the time we finished she was on her back to the hospital. She brought Popeyes and we watched the movie Selena I almost cried because I heard how she died by never got to watch it, it was the older one with Jennifer Lopez.

We continue to watch tv as we went to bed.

Sunday October 3 .2021

This was the morning I felt that I was going to be discharged form the hospital and on our way home. For breakfast I had some pancakes and sausage to drink I had some orange juice and the nurse gave me my medication and I was just chilling. The doctors came in by now it was just the fever spikes at night was reason they kept me an extra night. The nurse I had was trying to discharge me I really appreciated that.

Lunch time had just begun at the same time the nurse had came into my room to tell me I had been discharged in mid bite of my pasta and meatball I just felt it I was so happy to see my sister and dad. She said do you want to finish your lunch or just want to be discharge I said I wanted to be discharged so she was took off my heart monitor, pulse oximeter, and the IV I had.

She read me my discharge papers that I had to sign after that she went to go get a wheelchair and my mom went ahead down to get the car. For a moment I was left in the room by myself I turned on some gospel music and was praising God and thanking him for bringing me out of this one.

I told my mom to not to tell my dad I was being discharged cause I wanted to surprise him. He even called me I said the I using the bathroom the truth was I was sitting sign my discharge papers. While being rolled down to the lobby I kept thanking God for all his had done.

Pulling up to my house I got out of the car rang the doorbell and my dad opened the door and was so surprised and my sister was still sleeping so I waited until she had gotten up to tell her that I was in the ICU she just was surprised.

Now it has been four days I been home feeling much better still keeping up on my water intake and taking my temperature, oxygen levels and working on my breathing spirometer. God has and will forever been by my family and I side in times of needs he is just so good, caring, loving, merciful. Thank you God.

*pain medication: Dilaudid: treat moderate to severe pain

*nebulizer: A device for producing a fine spray of liquid, used for example for inhaling a medicinal drug

*I.C.U: a unit in a hospital providing intensive care for critically ill or injured patients that is staffed by specially trained medical personnel and has equipment that allows for continuous monitoring and life support

*high flow oxygen machine: Only offered if traditional oxygen therapy isn't helping, high flow oxygen therapy helps reduce the effort your body needs to put into breathing. By decreasing the effort of breathing and creating a small amount of positive pressure in the upper airways, this therapy helps improve oxygen delivery.

*active sickle cell crisis (in my opinion): is the pain the starts you feel it as the bad cells dies off

*CAT scan: n X-ray image made using a form of tomography in which a computer controls the motion of the X-ray source and detectors, processes the data, and produces the image.

*echocardiogram:a test of the action of the heart using ultrasound waves to produce a visual display, used for the diagnosis or monitoring of heart disease.

*breathing Spirometer:a common office test used to assess how well your lungs work by measuring how much air you inhale, how much you exhale and how quickly you exhale.

*PCU: The Progressive Care Unit or PCU is a telemetry (vital signs) monitored unit that provides care for adult patients requiring continuous cardiac monitoring

May 29.2021

My family and I watched this movie two nights ago. As sickle cell warrior I felt every scene from missing school to wearing base how cold or hot I am so I won’t have a crisis. Warriors need doctors like the one in the movie, that doctor was to the point and honest.

Living with a chronic condition is never easy it messes with my mental, emotional, and physical health. As warriors we just got to take it one day at a time.

Love T.B.