Help Get Kamari Home

Hi our names are Ameir & Jackie, the parents of Kamari M. We have been dealing with our son’s diagnosis since 08/2021. He was diagnosed with Short Rib Skeletal Dysplasia while in the wound. for the past 7months we have been driving back and forward every four days to Houston for doctor visits…He was born at The Woman’s Hospital of Texas, in Houston, TX. At birth he was diagnosed with Sensenbrenner & had to be intubated due to respiratory problems & being placed in the NICU. Four days after birth our baby’s first layer of his stomach had ripped open. So he had to undergo surgery & with also the doctors placing a g-button as well. A few days after being placed on the recovery floor, both lungs had collapsed on Christmas Eve. They then placed him on a oscillator machine to help with his lungs. A few days after, he started having seizures. Which now he is on a weaning script, there has been no more seizure like activity. He started to progress two weeks after having the seizures. He was then placed on the fourth floor getting ready to come home. He was discharged from the hospital on 02/21/2022 the day before my birthday. Which was the best gift and feeling God could ever give me. He was doing good for two weeks when he went into respiratory distress again due to an equipment

failure. He was taken to Nac Memorial where he was then life flighted by helicopter on 03/03/2022 at 02:30 a.m. to Clearlake, TX. When landed he was fine. Later that day the doctor stated it was best to go ahead and re-intubate him because of his deep breathing. The next morning the tub moved deep down into his lung, the doctor tried to replace the tube and it came out. She tried to replace it but it was difficult so they then had to call in respiratory and Pediatric Anesthesiologist His left lung completely collapsed and his upper right lung collapsed as well. While watching the doctor place the tube I was crying and praying praying and crying. I got discouraged a little bit because I’m usually strong. But I did what I knew to do was pray, & I prayed even harder. The Anesthesiologist got the tub placed back in place and they wanted him to rest for a few days especially being sedated and no extra movement. On 03/07/2022 the decision was made to do a Tracheostomy on our baby boy. On 03/08/2022, at 09:32 a.m. The surgery had began. A hour later, he was back in his room still sedated but his big but was up after surgery. He wasn’t use to anything being being around his neck he kept knocking the tub off 6 times. They are keeping him as still as possible so that the Trach can heal and less movement is best. He is still currently in the PICU. The Anesthesiologist also found a hole in his esophagus that is needing to be closed as well but the Medical Director said that can wait after the Trach heals. Today we had a meeting with the medical director, his case manager, and director of the PICU nurses, basically stating that it is highly required for us to move closer to his doctor’s and the hospital he is currently in right now. We have dealt with this again for 7 months. All we’re wanting is to bring him home, but we know it takes time. We are asking for help to help us in any way you can so we can get stable for him and be close to all of his doctors and the hospital as well. We have kept God first through this whole journey. We also want to thank our family and friends that has helped and checked on us as well. He is definitely a rare baby. He is loved and cared for by so many. He also got a Hospital TiTi that comes to visit him and just keeps him calm when we’re not there. When I tell y’all all his nurses are in love with him. He is the only baby in the world diagnosed with both syndromes. Again we want to thank everyone and we love you all!