Gram-negative Bacterial Meningitis

Parker was born September 14, 2005, six weeks earlier than we had planned. He was small, 4 pounds 11 ounces, and not breathing very strongly, but that was to be expected with slightly immature lungs. After a couple of days of oxygen and some time for his lungs to mature, we thought we would carry our new baby boy home to start our new adventures as a family. Unfortunately, that was not the case. At about 20 hours old, Parker had an apnea episode where he stopped breathing. The nurses got him to breathing again, but it was apparent that we might be dealing with more than just immature lungs and that Parker needed to be transferred to a Neonatal Intensive Care Unit to better care for him. The pediatrician informed us that it had been arranged to transfer Parker from our local hospital in Fort Payne to the nearest NICU at Huntsville Hospital Women's and Children's. Parker's dad and grandmother followed him to Huntsville, but I had to stay behind until my doctor would release me. It was the first of many heart breaks as a new mommy to watch them leave with my precious little boy and not be able to go with him. By the time I was able to join Parker later that morning, his situation had become precariously worse. Blood tests showed that Parker had a severe infection in his blood and an ultrasound had shown that he had sustained a bleed in the right ventricle of his brain during or shortly after birth. The infected blood had been introduced into the ventricles of the brain where spinal fluid is made and now his spinal fluid was also infected. The diagnosis was Gram-negative Bacterial Meningitis. Parker would need high dose antibiotics to have any chance of clearing the infection and then the doctors did not know what kind of damage the infection would leave in Parker's brain and other vital organs. I had only thought I knew what it felt like to be scared, but as I listened to the doctors explain Parker's situation, I felt a fear I didn't know was possible. The thought of losing this precious little boy that I had instantly fallen in love with was unbearable. This was not supposed to be happening this way. The next six weeks were a constant roller coaster. Parker had good days when our hearts would soar with hope only to be followed by "not so good" days that would remind us that Parker was a very sick boy. The infection slowly started to clear but Parker was having seizures daily. When he was four weeks old, the doctors decided to get a CT scan of Parker's brain. The radiologist believed that Parker had severe hydrocephalus, but the neonatologists believed that he just had severe brain damage. At six weeks old, they allowed us to take Parker home after repeatedly reminding us that they didn't know what kind of child we would have left. We didn't know what kind of challenges we would face, but it didn't matter, we were finally taking our precious Parker home. We were referred to Dr. Mathisen, a neurologist in Birmingham, for a consult on Parker's seizures. After having Parker home for six days, we headed to Birmingham for our appointment. It did not take long for Dr. Mathisen to diagnose Parker with hydrocephalus and determine that he would have to have surgery to place a shunt in his ventricles to relieve the pressure in his brain. We were rushed to the NICU at Children's Hospital to meet the doctor that would change our lives, Dr. Jeffrey Blount, Pediatric Neurosurgeon. After reviewing Parker's current CT scan, Dr. Blount determined that he would not be able to simply place a shunt in Parker. The fluid in his ventricles still appeared to be so infected that Dr. Blount said a shunt would simply clog and do no good. He would place an external ventriculostomy drain (EVD) that would relieve pressure in Parker's brain and allow the "murky" fluid to drain outside into a bag. This EVD would have to be in place until Parker's fluid was clear enough to place a permanent shunt. The next scariest moment of my life was when they took my baby into surgery for the first of many procedures. A week after his admission, Dr. Blount found an abscess in Parker's fourth ventricle which he said would have to be drained or it would further damage Parker's brain. That would be his second neurosurgical procedure and a much more dangerous procedure than the first. Parker was in Children's Hospital for seven weeks that first stay, the first of many. Dr. Blount would perform many procedures on Parker trying to fix the damage that had been done by the infection and get Parker's ventricles and fluid well enough to support a shunt. Dr. Blount has performed numerous surgeries to clear the tissue left in the fluid spaces of Parker's brain that will clog a shunt and not allow the fluid to drain. He has performed two craniotomies and numerous shunt revisions. In all, Parker has had over 40 neurosurgical procedures at Children's Hospital, with Dr. Blount performing most of them. When most doctors would have looked at Parker's first CT scan and said it was not worth trying, Dr. Blount said he didn't know what Parker was capable of doing and he would not give up on him. The nurses and other staff on 6NW have become our second family. They have held my hand and cried and prayed with me for Parker many times. Nearly three years and over 40 neurosurgical procedures later, Parker has finally gotten to stay home for six straight months and he will celebrate his third birthday in just a couple of weeks. I truly believe if we had not gotten to Dr. Blount and Children's Hospital, Parker would not be with us today. He now has three catheters in his ventricles connected to two catheters going into his abdomen. It is a complicated shunt system that Dr. Blount devised just for Parker's needs. Parker is on seizure medications and we think he has lost most of his sight and possible some of his hearing, although it is very evident that he loves music and recognizes his families voices. He has severe developmental delay and we are not sure how much he will be able to achieve physically. He is not yet able to hold his head up or roll over, but he is able to be happy. He can bang on his toys to make his music play and he hides his eyes behind his arm to play peek-a-boo. He loves to be held and snuggled and lets us know with the biggest, warmest smile. And he can laugh! When he laughs his whole body laughs and everyone around him laughs too. Parker has brought so much to our family. He has shown us what is really important in life. He laughs and smiles everyday! With every smile and laugh, we thank God first and Dr. Blount and Children's Hospital second.

To our family, Children's Hospital means many smiles and laughs we would not have had otherwise. Children's Hospital and Dr. Blount saved our Parker's life and we will be forever greatful. We are also so greatful to all of the nurses and other staff members at Children's Hospital. They have cried with us and prayed with us many many times. We love Dr. Blount, the nurses of 6NW, and the doctors and nurses on staff in the OR department like our second family.