April 17, 2015 "VP Shunt Surgery #3"

There have been so many things going on lately that it's getting difficult to keep Rayden's blog updated.

April 8-Rayden saw Dr. Chiodo, his pediatrician. He weighs 12 lbs. 12 oz. with the casts. I have been so worried about the shape of his head. She told me he had plagiocephaly, more commonly known as 'toaster head'. She instructed me to stop worrying about it. She says that when he starts sitting up his head will reshape. I hope she's right.

Over the weekend I noticed Rayden's left cast had slid down. I could no longer see his toes. Since we had other appointments on Monday I figured I would call Dr. Narotam that morning and let him know Rayden needs to be seen. We noticed he had a hard lump in his neck along the shunt tubing line. There was also some fluid pooling around the shunt cavity. This is extremely concerning so I figured I would call Dr. Elton Monday morning as well.

April 13- On the way to Rayden's two appointments at UNC I made those phone calls. Ann, Dr. Narotam's nurse, scheduled Rayden to be seen after his other appointments. Gretchin, Dr. Elton's nurse, informed me that they would be off site but I needed to page the pediatric neurosurgeon on call to see Rayden. So now we have 4 appointments today!

1-Ophthalmology- Dr. Gertsch reports that Rayden no longer has any optic nerve edema (swelling)! Praise God!!!! On the other hand, he is concerned that Rayden is not tracking like he should and seems to be farsighted. He says it's too early to tell if this is a problem or just slow development due to prematurity.

2-Gastroenterology- Kathryn Bauk, CPNP, examined Rayden. She is excited that the Prilosec is working so well to control his reflux. She even took him off the Zantac.

3-Neurosurgery- The neurosurgeon on call seemed to dismiss my concern about the lump in Rayden's neck. He continued to say he thought it was a lymph node. I knew it was not normal but maybe it was alright. He seemed more concerned about the fluid pooling around the shunt though. He took a picture on his cell phone and sent it to Dr. Elton then sent us on our way. He said Dr. Elton would be in touch if he wanted to see us.

4-Orthopaedics- As we were waiting in the lobby to see Dr. Narotam, the neurosurgeon we just saw called my cell phone. He stated that Dr. Elton was extremely concerned and wanted Rayden admitted into the hospital right then to do an MRI and X-Ray, with possible surgery on Wednesday. That sure threw me for a loop!

When they cut Rayden's left cast off I could not contain my tears. His foot looked deformed! It was so puffy and red. There was a terrible pressure soar on the top. How could this happen? We were on our last set of casts!!! I was so upset about this setting his progress back. Dr. Narotam seemed upset too. He said he couldn't put another cast on it right now because he needed the skin to heal first. So he sent us to the hospital to get Thermoplastic AFO splints.

Lisa Bostic started molding his splints right there in the lobby as we waited to be taken up to Rayden's room on the sixth floor. The splints are made of plastic that is heated and molded around his feet. There are strips of velcro on the bottom that hold the strips of felt in place fastening the splint to his feet. They look like little brown boots.

Soon they wheeled us off to X-Ray and MRI. Rayden doesn't seem to mind an MRI but he sure hates the X-Ray. He has to be strapped to a board and held in lots of uncomfortable positions. What a long day!!

April 14- Dr. Elton and his team arrived early to report the news. When Gretchen picked Rayden up Dr. Elton immediately saw the hard lump in his neck. He believes the fluid is clogging in or around the tube. (I knew it wasn't a lymph node!!) He informed us that the MRI showed smaller ventricles and more brain expansion!! I know God is answering our prayers. Although this was WONDERFUL news, the X-Ray revealed the shunt was malfunctioning. He needs to 'explore the shunt.' Surgery is scheduled for Wednesday. I can't believe my baby is having to go through brain surgery AGAIN!!!

For some reason everyone seemed to have a very difficult time finding a vein to start Rayden's IV. The nurses didn't even try. They called in the special IV team. They stuck him twice but both veins blew. I picked him up off the bed and told them that anesthesia would have to get his IV when they put him to sleep because this was pure torture!

April 15- They took Rayden away for surgery at 3:00 pm. It absolutely broke my heart watching the anesthesiologist take my baby away. I was so afraid he would be traumatized if they strapped him down to a table before they put him to sleep. She promised me she wouldn't do that. We all cried as she walked away with Rayden. The waiting was pure torture. Dr. Elton told us he would come to the room as soon as he was finished. After two hours with no word, I was really getting upset. I asked the nurse to find out something and she said Rayden was in recovery. Dr. Elton had been called to another surgery so we didn't hear any results until late in the evening.

They allowed Michael and I to go in the recovery room to see him. I spotted him immediately because his frog pacifier was sticking out above the blanket. The nurse allowed me to hold him and feed him two bottles of Pedialyte. He was covered in betadine and had little cuts and pokes all over. There were five staples holding the bandage in his head! My poor baby looked so pitiful. He would randomly scream out in pain which absolutely broke my heart. When we got settled in his room the nurses gave him antibiotics in his IV, Oxycodone and Tylenol. Soon he fell asleep in my arms. Dr. Elton came just after Rayden fell asleep. He stated that he changed the catheter that enters his brain with an adult sized one. He also changed the valve that pumps the fluid. The down stream tubing was fine so he did not have to replace it. I pray that he never has to enter my baby's brain again!!!

Rayden continued to have a rough night with the pain, noise and nurses waking him up. I really had to get angry with them all to allow him to rest.

April 16- They discharged us around 1:30 pm but we had to go over to Dr. Narotam's office to see what he wanted to do about Rayden's feet. His legs were still swollen from all the fluids given to him during surgery so he decided just to leave the splints on until Monday. He stated that he hated to give us more bad news, but he really believes he will have to do an additional surgery on Rayden's feet. I'm just going to pray real hard that God intervenes...