| My Worst Nightmare Happening To My Favorite Dream At the end of June 2002 our perfectly healthy baby boy TJ started to run a high fever. I took him into his Drs to be looked at. It was possible he could have an ear infection compiled with teething so he was given amoxicillin. That weekend we traveled to upstate NY for a graduation party. Poor TJ just seemed to get worse. All he would do is scream, and if he wasn't screaming he was nearly impossible to wake up. He had no interest in eating and the fever was still high despite being on antibiotics for 3 days. The following Monday I took him back to the Drs but couldn't see our regular physician because he was so booked. Instead TJ was seen by a Physicians Assistant. She never checked his fontanel to see that it was depressed nor did she listen to me when I told her how he wasn't eating or producing wet diapers. She ignored the fact he had lost 3 ounces in 4 days. Instead she sent us out the door with a clean bill of health. Not satisfied with her diagnosis, I took him to the Emergency Room the next day. He was giving IV fluids and treated for severe dehydration. He still had his fever with Advil in his body. They sent us home. That night he began to vomit a brown coffee ground like substance. The more the day wore on the more he vomitted. I rushed him again to the ER. This time we were taken more seriously. Again more IV fluids and blood work as well as a chest X-ray. My little baby boy just layed there thru it all never flinching. At one point I looked at him and his eyes had begun to roll around in their sockets. I questioned the nurse and his blood sugar was tested. The results was a 5 on the heel stick and an astounding 1 from the lab. Our regular Dr made it to the hospital and performed a spinal tap which came back negative. He then told us there was nothing he could do and TJ had to go 2 hours away to Burlington Vermont Childrens Hospital at Fletcher Allen Health Care. We were greeted by pediatricians who looked him over here and there and assessed he needed to see the pediatric surgeons who told us he needed surgery. We walked up with him and gave him kisses and prayers and then waited as they took him off to the OR. It seemed like a lifetime wait for Dr Vane, attending Pediatric Surgeon to give us the news. Somehow TJ's body killed off 100cm's of his small intestine just below the stomach. They had no idea how this started and asked a whole slew of questions about our backgrounds and my pregnancies. Still nothing turned up a clue. Two days later our baby took a turn for the worst and his body began to shut down systematically. His kidneys hadn't produced urine in over 20 hours, his lungs were looking cloudy on x-ray, and his liver enzymes were terrible. His body was so acidotic he was points away from cellular breakdown. Necrotic lesions were starting to form on his arm and leg. Our baby was dying. They gave him 3-12 hours to live. They had tried everything including an experimental drug called Xigris. We demanded our family be able to hold him to say our goodbyes. My mother and father came up together. My father had never before set eyes on TJ and now he was seeing a very swollen baby who was dying. He couldn't help but let the tears run down his face. My in-laws came from NY to be with us. My mother in law had only met TJ once before. I held TJ first, unbelieving that I was going to lose him. I broke down thinking I would never rejoice in his first tooth or celebrate his first birthday. All I could think about was how TJ had been my gift, and God couldn't take him back. You just don't take gifts back! I asked TJ as best I could to look down from Heaven and be a guardian angel to his brother and sisters. Then I let my husband hold him. My husband was silent as he rested his head against his son's and cried. Tears ran down his face and onto the soft baby hair that looked like it was turning to blonde. I thought I would never know what color it indeed chose to be. I heard Tim whisper to TJ that he couldn't give up, that he was an Olmstead and they were too stubborn to just give in. They sat there for some time like that, just head to head. Tim ended up passing TJ to his Aunt Jan to hold while he used the restroom. She composed herself quite well, saying how she was sure he was going to be the one that got away. I left the room for a moment trying to process. I walked down the hall out of the PICU and stared out a large window with only a view of the sky. I thought to myself and lipped silently, "Okay God, if you were going to give us a miracle it's got to be soon" and walked back to TJ's room. A Prayer Answered When I opened the door there was a new excitement, TJ had begun to move his hand! Then as I looked at him his head moved! My son was telling us not to say goodbye, that he was going to fight and we couldn't give up on him. Not too long afterwards a tiny bit of urine began to flow down the catheter tubing. His kidneys were beginning to function after 24 hours. We had the nurse call Dr Vane and we told him not to stop treating TJ aggressively. To keep up with the blood cultures and labs. Technicians had come in earlier that day to biopsy the necrotic lesions on his arm and leg. They came back as pseudomonas. We now had an idea of how to treat him. From there everything began to fall into place. Everyday in tiny increments TJ improved. His kidney's responded well to the diruetics and was producing good volumes to try and get the swelling off. They began suplementing his nutrition with TPN (Total Parenteral Nutrition) and Lipids (fat) thru his central line (basically an IV in his groin). Everything was looking up. He was taken in for another exploratory surgery. Another part of his large intestine was looking rather grey as well as his rectum. His anus was full of ulcers. They put a Jackson-Pratt drain into his gut, and a pemrose drain into his rectum. TJ continued to get stronger, and his labs still climbed towards the norm. A few weeks went by and he went in for his third surgery. The corrected his ileostomy, and created a looping colostomy from his large intestine. They also removed the drains they had in place. He had so much adhesion inside his abdomen they couldn't do the spinal and he had to be put under. Which meant the ventilator came back. Dr Vane said he wanted him on it overnight so he could have pain meds if he needed them. That turned out to be false. TJ came out of the anesthetic and gagged on the tube. He cried silently all night and we begged that the tube either be taken out of he be given something to help him. Even TJ's nurse Shanta was distraught over her inability to do anything for him. The next morning one of the PICU Dr's gave him some versid to take the edge off. Later in the day Dr Heath came by with Respitory and removed the tube. Over the next few weeks we tried to get him to eat anything by mouth with little or no success. A feeding tube was placed in his nose and down his throat to give him nutrition. The central line and cathedar had been removed to to a fungal infection in his blood from all the antibiotics he was receiving. The theory being fungus sticks to plastic. They had also temporarily stopped the lipids because one lab result showed it "fed" the fungus. As TJ came more and more out of the morphine I noticed his eyes weren't right. They would move rapidly back and forth in the sockets. I asked Dr Forgione if it was because of the morphine, or if TJ was blind. Neurology was consulted as was Neuro-Surg. A CT scan was performed for the second time, only this one showed some abnormalities in the ventricles. An EEG was done, again showing abnormalities and rapid eye movement. The Neurologist wouldn't tell us anything just yet, and neuro-surg said there was nothing that concerned them. The next day he had an MRI, which confirmed brain damage. His white and gray matter had taken a sporatic and substantial hit. The chances of him living a normal life were slim to none. This just sent my husband reeling. He had such a breakdown, he couldn't go back to work until he sought counseling. Luckily he could get temporary disability. It also meant our other children could come back to us from New York. Our family was miserable torn apart. We still fought with TJ to eat on his own. The Feeding Team came down and showed us a few "suck swallow" techniques which didn't work well. TJ would take Tim's thumb, so we went off to Toys R Us in search of the largest nipples we could find. We settled on Gerber Nuk nipples. Still he had no desire to eat. We were moved from the PICU up to Baird 5 Pediatrics. The pediatric Opthamologist came to see him and told us TJ's optic nerves are very pale and he was blind. God, what more did my poor baby have to go thru?! It's just so unfair. About a week after being in Pediatrics we had a meeting with TJ's caregivers about going HOME. It was surreal. TJ ready to come home? This, the baby who had maybe 24 hours to live is coming home?! We got set up with OptionCare to supply his feeding pump and bags. With the VNA to give us a nurse for home. Everything happened so fast. We just had to make sure the fungal culture came back negative. We waited with baited breath those next 48 hours. We constantly asked the nurses if anything had grown yet. Still no word. Finally August 14, 2002 7 weeks to the day we brought TJ to Fletcher Allen, I walked out the door with him. No fan fair, no nurse to walk us to the door. Just me and him in his little car seat walking out into the sunshine. I held the tears back not wanting anyone to see me cry. Once we were in the car driving out of the parking garage I let go. Tears streamed down my face and Tim told me to hold it together because I was going to make him lose it to. It was just amazing to have my son outside with the sun on his face. |
   |
 |
| Photos of TJ in the hospital. Viewer Discretion advised. |
 |
| Aidan with TJ shortly after coming home! |
 |
 |
 |
 |
 |
 |
 |
 |
 |
| The Miracle Workers -Doctors- Dr Dennis Vane Dr Forgione Dr Cindy ? Dr Tony DeRoss Dr Barry Heath Dr Mike ? Dr Peter Bingham Dr William Razka Dr Gautham Suresh Dr Homans -Nurses- Cheryl Shanta Renay Randy Susan Terry Peter Holly Matt Barbara Grace Theresa All the labratory technicians, xray technicians, various specialists, The American Red Cross (everyone who gave the blood products TJ recieved!), The Ronald McDonald House and volunteers, Childrens Miracle Network, every single person across this Earth that said a prayer for our son! |
| Taryn with TJ the same day |
 |
| TJ 1 YEAR LATER |
 |
 |
 |
|
| HOME |