Kidney4Kaine

Hi, my name is Joleasa! I am the mother of Kaine. This was the worst experience I ever had in my life as a mother, having to watch my son go through so much pain but I can say with everything piece of my heart that I literally have the strongest, briefest 5 year old in this world nothing can stop him On this day 1 year ago my Babyboy Kaine was diagnosed with Kidney failure this slideshow will show you everything he went through during his journey.. but the reason I am making this post is because this journey is almost over!!!! Kaine has officially been approved and listed for transplant.. Kaine does dialysis every in Columbia S.C an hour away from where we reside every Monday, Wednesday, & Friday until he has a transplant. I am searching for a living donor if you would like to donate please contact me! I know Kaine has a lot of love and I've had a lot of people reach out to check on him not even knowing what was going on, this was something I only kept between myself & my family, only a few knew what exactly was going on.. this situation was extremely personal, it felt so unreal my heart was broken!!! but by the Grace of God, he has given me the strength to finally tell my sons story with so much PRIDE because Kaine future is bigger than anything he has/is going through God has something BIG in store for this baby!! he has been chosen ⭐️ and this will only be apart of his story so in this post I will give a few details of what exactly happened each day!I also wanna thank everyone that has been there for my son and I! I honestly couldn't have done any of this alone I will never forget the love and support we had, I will cherish and appreciate everyone of you forever! ❤️

March 16: found out Kaine's kidneys has never grown since he was a baby.. And that there wasn't any hope for them, was told that he has to do dialysis until he gets a transplant.. Told me that he would have to be in the hospital for at least 3 weeks

March 17: completely shut my salon down to be there with my child 25/8 (I didn't work for a full 6 months... maybe 1 or 2 clients a month)

March 20: Doctors decided to give Kaine a NG tube because he wouldn't take his medication by mouth!

March 24: Kaine had his first surgery. Peritoneal dialysis! It is one type of dialysis treatment for kidney failure. It uses a fluid that you put in your belly and then remove to clean your blood. You can do PD at home.. Kaine was assigned by his nephrology doctors to stay on his PD machine for 10 hours overnight everyday!

Kaine did Peritoneal dialysis for 2 days in the hospital and found out he caught an infection somehow because his PD catheter was not working well.. they gave him antibiotics to clear the infection for 2 weeks.. since he wasn't getting dialysis he gained a lot of fluid over those couple of days..

April 1: Kaine had his 2nd surgery. Hemodialysis, In hemodialysis a machine filters wastes, salts and fluid from your blood when your kidneys are no longer healthy enough to do this work adequately. Hemodialysis has to be done by your care team. This treatment is only 3 hours but more harsh on the body! This treatment is normally used for adults.

They decided to use hemodialysis because Kaine gained so much fluid over the time he was waiting to be able to do PD again they agreed that HD would remove the fluid faster!

Physical therapy came to see Kaine everyday to help him learn how to walk and move around again with the extra weight on him to help strengthen his legs back up from being in the bed for 2 weeks straight!

Kaine did Hemodialysis for like a week and a half the fluid was coming off really good.

On April 5th Kaine wanted to walked around and play, we played for about 30mins walked around and went to the play room.. when we got back in the room Kaine had a seizure in my arms and stop breathing I LOST MY MIND!!!!!!

Found out he had hypertension from being overwhelmed and over medicated .. all kidney patience have high blood pressure due to the fact that their kidneys no longer work and the body is forcing them to try! I will NEVER forget Kaine's blood pressure was 196/150!!!!!!

This day was the day I hit my knees and cried my eyes out to God!!!!!! After they took my baby I sat in my car in the parking lot and talked to God for hours!!!! Honestly, after that I never cried again.. it's like a weight was lifted off my shoulder and it's like God told me that everything was going to be ok, I don't have to cry anymore! I went back in and my baby was breathing on his own and doing well..

The next couple of days Kaine decided that he wanted to be a doctor when he grow up after witnessing what he went through hisself. Kaine also started taking his meds by mouth with no problem at all.. so they took the NG tube out!

A few days later Kaine Peritoneal catheter started back working and we were able to be discharged on his birthday April 17th.. the night before we were discharged, Kaine was complaining of stomach pains. I let his nurse know.. nothing was done, so I stayed in the hospital an extra hour to let my son rest to see if he would feel better when he woke up again, we were being discharged to go straight to dialysis training for me to learn how to do PD from home .. when we finally left and got to training I told the trainer that his stomach is cramping.. she said she couldn't put him on the machine if his stomach is hurting and to take him back to the hospital .. we left the hospital at 8:45 because we had to be to draining at 9am. We were back at the hospital (Augusta University) at 10:00.. they told me he was just dehydrated gave him a sprite and discharged us again.. went home, still trying to get Kaine in the mood for his birthday he was not feeling good.. he threw up and cried all night long! I Checked his medicine list they sent him home with almost 20 medications some that he took in the beginning when he first got diagnosed and that he stopped and were no longer taking ..but they never took it off the list so he came home with every single medicine he had since March 16.. next morning I immediately took him back! They admitted him and finally gave him IV fluids for dehydration we stayed for another week because training had to be for a full week Monday-Friday so since we were re admitted we missed 2 days of training he had to stay at the hospital and get treated cause I haven't been through training yet to do it from home! So Monday morning April 25th we were discharged again and went straight to training!

April 29: Kabby's birthday.. this is the very first birthday my son has ever spent without me. Wasn't able to go because I had to be there for Kaine. I missed a lot of time and events with my oldest son due to his brothers circumstances.

May 2nd: Kaine went to visit his school. He loved his Pre K teacher and classmates he missed them so much they were so happy to see him .. Kaine missed half of his Pre K school year

May 18: Kaine had his 3rd surgery to get his Hemodialysis catheter removed because he was now doing PD from home!

May and June went perfect! Everything was going well! We stay home for 2 full months.. until July, Kaine started complaining of stomach pains again! He could not eat or drink because his stomach was so cramped up so bad!!..so I took him back to see what was wrong, he had caught another infection. The antibiotics takes two weeks to clear the infection so we were there another 2 weeks before discharged again. We were discharged July 13th they also put the NG tube back in Kaine's nose because he lose so much weight due to the fact that he wasn't able to eat because of stomach pains... they were feeding him Renal Start formula through his nose 3 times a day and 2 over night (THATS WAYYYY TOO MUCH FLUID)

August 1: Kaine woke up with his tongue swollen out of his mouth!!!! Scared me to death!!! I rushed him to the hospital AGAIN .. found out he had an allergic reaction to one of his medications called Lisinopril! We were admitted once again, I was so sad! My sons first day of Kindergarten was coming up, he missed his first day but was able to make it to the 1st day of the second week of school! Kaine was only able to go to school for 1 day because we were BACK admitted by April 7th

At this point.. well even though I was thinking it way before but this was where I drew the line, this hospital didn't know what they were doing with my child!!!!! I continued to pray pray pray! I was praying for better doctors, other answers, strength for my son to keep going until we figure this thing out! I just needed to know something different!! Someone else's opinion .. after a while I didn't believe anything they were saying! April 7th they told me that he has swollen back up because the medicine is not completely out of his system so it could maybe happen again a few more times until the medicine is completely gone! The swelling from an allergic reaction should normally be down after given medication for it, they had given him plenty of allergy medicine he still was gaining and swelling nothing was going down, so I knew it had to be something else. I later found out that his PD catheter just completely stopped working. It was no longer draining any of the fluid that he was receiving.. so they went in and did another surgery to see if they could fix it but found out it couldn't be fixed because completely stopped up and damaged from all the scar tissues that had build up around it from those 2 infections that he recently had. (Is what they told me)

The doctors decided he needed to go BACK to hemodialysis until the PD catheter just "MAGICALLY" starts back working smh

Only thing was the only way he could do hemodialysis is if he stays in the hospital.. Augusta University doesn't have out patient services so he would have to stay admitted just to get dialysis every 3 days .. found out that the closest hospital that could treat Kaine as an out patient was Prisma Children’s Hospital in Columbia S.C so we had to stay admitted in AU for 2 months until Prisma accepted us! Kaine couldn't go anywhere couldn't even cross the street, Lord it felt like my baby was in Prison! Kaine missed our family reunion this year so the family came to him!

Finally we were accepted and transported to Columbia on Sept. 5th! They immediately got straight to it! They ran all the tests again because they didn't want to go off another hospitals info they wanted to do their own research and they wanted to figure out everything that is really going on themselves! I knew I loved it there the first day I came.. that day was the day I finally got to see my sons kidneys.. they were so tiny they also did a swob on Kaine to see if his diagnoses is genetic.. a couple weeks later the results came back that they were! We only stayed admitted into Prisma Hospital for 3 days they removed Kaines NG Tube said that he eats just fine he can't eat by mouth and have a feeding tube that doesn't make sense, on top of giving him liquid meds by mouth that's where all the fluid is coming from .. Kaine started off at AU with 10 medications.. he is now only on 3! He has been doing well only is seen by his nephrology doctors in Columbia only on the days he's being treated! He has not been admitted since October! He can finally be home everyday and live a partial normal life! Kaine doesn't look like half of what he's been through.. believe it or not he actually knows and remembers everything, he's a champ! No problem taking his med, he reminds me every morning lol he knows when he's had too much to eat and drink, knows the type of foods he can't have, he knows the days he has to go get treated! He's a pro at this but now he's saying it's time for him to get his old body back ❤️ please if you would like to donate a kidney for Kaine please contact me anytime!