KEONRetrun to 22q Stories
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Keon was my third pregnancy, and throughout it was the hardest pregnancy. At 24 weeks my fundal height was measuring a 40 week pregnancy, the doctor insisted I was having a large baby, and I was eating very well. I figured since it was summer and I was invited to alot of cookouts he was right! I had a triple screen check for chromosomal abnormalties and it came back normal. I had ultrasounds that also appeared normal. However I went into labor at 36 weeks gestation, and while in labor ultrasound of the heart appeared normal, I was in labor 36 hours (coincidentally).
Keon was born on September 19, 2006. They said I had polyhydroaminos, and the pressure of the access fluid is what sent me into early labor. All seemed to be going well except his color in his lower body seemed to me a bluish grey color, and when feeding he wouldn’t swallow, he would let the food pour out the side of his mouth. I also noticed he would barely open his eyes, or awaken. The staff insisted that he is a newborn and that is normal. On the day of discharge (two days after delivery) I was showering and getting ready to bring my baby home, when the nurse came into the shower and insisted I immediately get dressed and get back to my room NICU doctors were in there awaiting me. I went to my room and I was informed my OB/GYN came in to do rounds and noticed Keon’s blood sugar was dropping little by little the past two days and she sent him to the NICU to have testing done (thank God)! They informed me that his kidneys had shut down and failed, they did echocardiogram, and discovered an aortic arch interruption, ventricular septal defect, and atrial septal defect. They also informed me that due to the lack of oxygen to his lower body he developed necrotizing enterocolitis. Since our local children’s hospital didn’t have a pediatric cardiac surgeon, my baby was immediately put on life support, and transferred to Rochester Golisano Childrens Hospital. Before the transfer, the geneticist came and asked me if I had a family history of heart defects in my family. I let him know I didn’t, and he told me that he was going to do genetic testing due to the severity of his heart defects.
Keon was in the hospital in Rochester for a month and a half before he could have his heart surgery because the necrotizing enterocolitis had to resolve prior to surgery, and thankfully it resolved on it’s own without needing further surgery. Keon had his heart surgery and the wonderful Dr. Alferis corrected everything within five hours! I was staying at the Ronald McDonald house and til this day I never new such hospitality. I had two other children and they arranged for all of our needs to be met so that I had nothing to worry about but to be there with Keon. Keon had a remarkable recovery from his heart surgery, in fact, he pulled out his own drainage tube and scared us but he was ok. Once they tried to feed him again, they noticed that he wasn’t swallowing and the did further testing that showed he had a poor swallowing mechanism and indefinely needed a feeding tube for survival.
Keon had his surgery for the feeding tube and was not tolerating his feeds still, they insisted his heart was going to be the least of his problems and his feeding issues were going to be the biggest problem we will face. We went home on November 31, 2006.
When we were home I noticed he started getting a nasty congestion and it seemed to get worse after his feeds, then he began vomiting and the congestion became alarming. I took him to the hospital several times, he ended up getting pneumonias. The staff insisted it was a viral pneumonia that he kept getting, however I knew he aspirated and the congestions were getting worse each time he vomited. It took for the nurse to see him aspirate in front of her for them to take me seriously. Of course by then he had several aspiration pneumonias and developed chronic lung disease due to the scaring in his lungs. The hospital supposedly did a huge work up and insisted they ran out of options and they couldn’t treat him any longer.
Keon was transferred to Cincinnati Childrens Hospital after several months of insurance and hospital negotiating a contract while my son was in the hospital not be treated! Cincinnati could not find anything and his tests appeared to be normal. Keon was then transferred back to our local hospital and the vomiting persisted. They replaced his G tube with a gastro jejunal tube. That took a long time to work, and he was put on a continuous feed and had to have a continuous vent on the gastric port. They said he had a severly delayed gastric emptying, severe GERD, and they also suspect some kind of dysmotility disorder. Today Keon is 3 and will be turning 4, the healthcare in this area for the special needs is horrifying! Keon started preschool at a school for the special needs, and finally my concerns are being addressed due to other medical staff outside the hospital sharing the same concerns and going as far as to go to the appointments with me to question the lack of care.
Keon just started walking, still not talking, but received a Dynavox, that he is a pro at, and I learn from him! Keon was found to be tongue tied, and is going to have a minor surgery to correct his frenulum, they also suspect him to have a soft palate, which they are going to take a look at during surgery. Keon has had his fair share of medical nightmares, however he astonishes me everyday. I am very lucky to have him as my son, he has taught me so much! He is so much more stronger than I can ever imagine to be, and at the same time, he is such a happy, social baby, that smiles all the time. He has always been a very good baby, hardly ever crying (only when needs a diaper change, or I turn the channel from Nick Jr). Keon currently is diagnosed with DiGeorge Syndrome, rickets, hypocalcemia, GERD, episodic partial bowel obstruction (til this day he never had a lower GI performed when the hospital claimed to exhausted their options), chronic lung disease, electrolyte disturbance. He also had to have his thymus gland removed during his heart surgery due to it being severly underdeveloped, and deformed. Keon started walking and it seems to me, that his stomach issues have tremendously changed for the better… Benefiber has worked miracles! I am so happy I found this website, I have so many questions, it wa s one of my biggest issues not having anyone to relate to, I could find anyone in my area with this syndrome due to HIPPA laws!