Corbin's Story

 

Due to my recovery and complications I was not allowed to go to the NICU for a day after delivery. However the boys had been immediately rushed over and put on life support. Caleb was rocky at first but appeared to be at least holding his own, and the last I had heard, Corbin he was doing excellent, on minimal oxygen and looking great! That was until late Friday night just a little over a day after they were born, Scott had gone home to get some sleep and I had only been over to the NICU once so far, and still had not walked more than four steps. The Neonatologist came into my room and woke me to tell me that Corbin had had a massive pulmonary hemorrhage, was on %100 oxygen and still they could not get his saturations out of the 30's (they should be in the 90's). But the absolute shock hit when she said; "We can keep him till you get over to him then you can hold him as he goes". I still cry now to remember what it felt like to hear those words. So I got up and dressed and walked the hallways till I made it to the NICU, there I found my son, he was blue, he had a chest tube protruding from his ribs, and a catheter from his breast bone. They told me as they inserted the chest tube his chest cavity had exploded and they now had to suction loose oxygen floating around in his chest cavity as well as suction the blood from the pulmonary hemorrhage. He was on a flat, warmed emergency bed and you almost couldn't find his tiny body lying lifeless amongst all the tubing and wires and blood stained bedding. I sat down and began to talk to him, he never moved and I knew he couldn't look at me even if his face weren't covered as to his eyes were so under developed his eyelids had not separated yet. But still, as I sat there and talked to him it was like he knew mommy was there. I know he knew because he didn't die, as a matter of fact, I watched his saturations slowly rise from 30 to 70. It took five hours, but I sat there and continued to talk to him the entire time, at that point the doctors took over again. They must have been religiously against coming to us with any good news. Apparently all the stress on Corbin from the pulmonary distress had caused blood vessels to begin rupturing in his brain, and the bleeding from this type of hemorrhaging was at a maximum stage. Both of his ventricles were filled so full of blood they were swollen hence putting additional pressure on his brain. They deemed that there was nothing they could do for this due to Corbin's unstable pulmonary condition. So we waited, and waited, eventually anyone would know that pressure building in one's head is going to cause problems, and it did. Corbin developed hydrocephalus (water on the brain). They called a Neuro surgeon in who said that the cure, a shunt, would literally kill him, but they could actually insert a needle into his head once a day to drain fluid and slowly relieve pressure. They had told us that at this point we had a completely comatose child who may very well be completely brain dead anyway. With that we decided the least we could do for Corbin was make things a little more comfortable for him in the long run. We decided to go ahead with the needle thing, only they had to take Corbin down for a cat scan first just to be positive nothing had been missed in the head ultrasound. Of course when the results came back something very large had been missed, a blood clot on his cerebellum the size of a quarter that was just resting up against his brain stem. This meant that relieving pressure fro m the top of his head would act as a vacuum affect and pull the blood clot upward, in doing so it would crush his brainstem. We knew without needing to be told that you need a functioning brainstem to be alive, so all the doctor could say to us was, "All we can do is wait and see if he lives". There is no one on this earth I have ever been more disgusted with in my life than that man. So anyway time went on and on, about four months later we had Corbin down to a conventional ventilator on minimal oxygen and we were going to try and extubate him. He had done so countless times on his own, but had always needed to be reintubated. Try after try, the extubation process was unsuccessful. It was eventually discovered that that Corbin' s vocal cords were paralyzed so far apart from each other that he had no functioning airway at all. So off to surgery we go and Corbin receives a tracheostomy at about 2 1/2 lbs. Even more incredible, at four hours after surgery he was extubated and has never been back on the vent since. Unfortunately the day after Corbin got his trach someone had the bright idea to give him his first bottle; he appeared to wolf it down, so the nurses continued to feed him for about a week. At about that point something just seemed funny and after much trials and tribulations we found out Corbin had been aspirating on everything he was given orally and not only that but he had such bad reflux, he was also aspirating on everything that came back up from his tummy. Back to surgery, Corbin immediately received a nissan (knotting of the intestines to suspend reflux) and a g-tube, he was only about 3 lbs. so it wasn't actually a g-tube, it was sort of more like a catheter sticking out of his stomach. Finally after six months at around 5lbs. Corbin came home; he was only home for about 2 weeks before he landed himself back in the hospital with respiratory distress. But with lungs that have been through all that, a few stays in the hospital are to be expected, and so we have done that twice now since he was discharged from the NICU. Nowadays, at eight months of age, Corbin weighs just over 8 lbs., has PT and OT each twice a week, and speech once a week. He had begun to eat a little bit by mouth again but has since stopped as of two weeks ago. He smiles now, and is far from comatose or brain dead. The doctors still don't know what to expect for Corbin, but how can they when he has shocked them so many times in the past. Even aside from the story above, Corbin fought to survive through countless I.V. sticks, infections, transfusions, e-coli in the lungs, and the ultimate of discomforts. Sometimes I wonder why he wants so badly to be here, he is still wired to his bed, attached to a myriad of machinery, and medicated to the hilt. Then I remember, it's because he is my son and I fought for him to be here, so really we fought for each other. I believe he knows his family loves him, and we just wouldn't be a complete family without him. I know this is long, and I don't expect everyone to read the whole thing, but if you just browse through and look at the pictures, well that makes all this effort completely worth it. After all, just the fact that there are pictures of my sons is the entire point!

This story was written by Heidi, Corbin's mother.

This site designed & maintained by Mystic Dawn Web Creations. The Cerebral Palsy NetworkŠ1997/2003. All graphics are the exclusive property of CPN, unless otherwise indicated. Contact CPN at Cerebral Palsy Network   for further information.

Last updated 03/24/03