Clayton Staggs
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My name is Lachelle Staggs, and my 2nd child, Clayton, was born at 31 3/7 weeks because I had HELLP syndrome, a form of preeclampsia. On April 8, at 12:18 a.m., Clayton was born by emergency C-section. Clayton was small for his gestational age, weighing only 2 pounds, 8 ounces, although he was 16 inches long. At first, when his sats would bottom out, the doctors kept telling us that he was just being a preemie. I kept insisting something else was going on. They even talked about back-transporting Clayton to a hospital closer to our home until he could get big enough to drink from a bottle, keep himself warm, and come home. That's when the trouble started.
We changed doctors every month since we were at a teaching hospital. Our new set of doctors realized something was wrong. We had been told since Clayton's birth that he had a small chin; now we were being told that it was causing him trouble. We were told that his tongue was blocking his airway and causing him to stop breathing. We had consultations with genetics, and were told all sorts of things: he had Pierre Robin Sequence, Stickler Syndrome, etc. At one point, I was even told I had Stickler's. Finally, we were cleared by genetics, they found nothing wrong (we have to follow up with them later this month). We tried waiting to see if he would outgrow it, he didn't. We tried the "button" or tongue-lip adhesion; he coded the next morning. The doctor told me if Clayton had any more life-threatening spells that he would recommend a tracheostomy. Two days later, the phone rang. I immediately knew it was the hospital. Clayton had dropped his sats to 50. The nurse just wanted to call and let me know. After that, I sat in the floor in Clayton's room and cried. I knew what the doctor would say the next day.
When I got to the hospital, the doctor had already called the surgeon. On May 21, Clayton got his trach. He has been a different child since then. We can hold him in different positions; before, he had to stay on his stomach. He smiles and "plays" with us now. It is unbelievable how much it helped!
The next hurdle was Clayton's reflux. We were told he would need a nissen and a G-tube, but he needed to gain another 2 pounds before they could do the surgery. This would mean another 3 weeks in the NICU where we had already stayed for 10 weeks. We ended up moving to the pediatric surgery floor where they let us come home a few days later with his NJ tube in place (His reflux was so severe, his feeding tube went straight to his small intestine). We finally came home 11 weeks after Clayton was born, on June 24.
On July 29, we returned to the hospital for Clayton's surgery: nissen, G-tube, hietal hernia repair, and circumcision. The surgery took 4 hours, but everything went fine. He came home 3 days later, and has been doing great!
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Update, September, 2003: We were back at the hospital, Clayton's sats kept dropping throughout the night and his heart rate
went up. We stayed at the hospital for 4 days, to find out he had a respiratory virus. That was on the first. On the 19th, exactly 2 weeks after I returned to work,
Clayton clogged his trach with secretions at daycare and earned himself a helicopter ride back to the hospital. The EMS crew was not comfortable transporting him on the ground! The next day, they let us come home
because all of his trouble is STILL from the same virus, which he had not had any medication or treatment for. Ten minutes from home, he
clogged his trach AGAIN! Having to do an emergency trach change and CPR on your own child twice in 2 days is WAY too much. After everything
calmed down and we got home, Clayton thinks the whole thing is funny!!!
Update, October, 2003: By the middle of the month, with help from steroids, we are finally oxygen free during the day, and needing it only a little at night. Clayton is getting .25 liters of 24% oxygen, but this tiny amount makes him happy. (This is the only time he has been oxygen dependent since birth.) He still has horrible reflux, even after the nissen, 3 meds daily, thickened milk...He has also developed an oral aversion. On the bright side he weighs almost 16 pounds!!!
Update, April 2004: Hello! I just wanted to give you a final trach update: Clayton was decannulated yesterday, April 23rd. He did wonderfully throughout the night, and was released first thing this morning. His gagging and coughing spells associated with feedings have also stopped. He is able to tolerate 7 ounces at a time with no trouble! This is such a wonderful thing!
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Thank you so much for the great website and all of the useful information!
Lachelle Staggs
