Friday, April 27, 2012

Luke's Story: Part III - Set Backs

First off - I can't tell you the rest of Nathan's story without first telling you part of Luke's. I have come to think of them as one in two bodies ... figuratively speaking!

After Nathan's birth, Luke had gone to stay at my mom's house 40 miles away. My mom had brought him to the hospital before we were discharged so I could give him a hug and a kiss goodbye. She would only be keeping him a couple of days, but I cried when they left. As I held him before they left, I noticed he seemed a little lethargic and had a fever. Mom said he hadn't been eating much and seemed tired. She said she would take him home and let him sleep; it'd been a long couple of days for him as he'd been shuffled between grandparents and friends while I was in the hospital. I missed him before he was even out the door.

Nathan and I were home for about four hours when my mom called. SD was at work and had my car so I was pretty much stranded. I answered the phone, expecting to hear my mom tell me that Luke wanted to say hi; I was totally unprepared for what I heard.

"Luke is seizing!" she screamed, "Call the doctor!"

It took me a minute to process what she'd said - as I was telling her to call 911, she hung up. I tried repeatedly to call her back but she wouldn't answer. I called 911. The dispatcher had to calm me down quite a bit before she could understand what I was trying to tell her. She assured me there was an ambulance on the way and her partner who took my  mom's call could hear Luke crying in the background. I was so relieved - my baby was breathing!

I called SD at work but he was on a delivery (he worked at a sandwich shop) and couldn't come get me. He called his sister, Tammy to come give me a ride. While I waited for her, I packed up a bag of clothes for myself and the boys and tucked Nathan into his carseat - all the while stressing about why in the world my baby would have had a seizure.

Tammy finally arrived and took me to meet the ambulance at the ER. You know when a scene in a movie slows down and gets really blurry and you can hear the character's heart beating? That's what it felt like as I tried to explain who I was and that my baby was there somewhere and I needed to see him. A nurse finally pointed me in the right direction and I ran down the hall, Nathan's carseat bouncing on my arm.

I gasped when I saw Luke - his little body laying on the bed, his sleeper open exposing his little chest with monitor leads stuck all over him and an oxygen tube across his face. I practically dropped poor Nathan and went to Luke. He started to cry when he saw me and I had to grit my teeth not to cry with him. I heard a nurse say something about me having to leave because my presence was causing Luke's heart rate to accelerate. I swallowed hard and began to sing to him, thinking it would calm him and his racing heart. It did, but it was hard for me to keep it together. I was singing "You Are My Sunshine" and as I got to the part where it says, "please don't take my sunshine away", my voice broke. The song became my prayer, my plea to God - whatever the cause of the seizure, please don't take my baby!

A nurse was there wanting to start an IV. I knew it needed to be done - Luke was dehydrated and had a fever of 104. He needed the fluid not just for hydration, but to cool his little body. I remember telling the nurse she had one chance to hit a vein. I would not allow him to become a human pin cushion so if she wasn't good at placing a line, she needed to find someone who was. She hit the vein the first time, but it was so difficult for me not to pull his little arm away from her as he screamed. I just held his hot little face in my hands and kept singing through my tears. They immobilized his arm and started the fluid.

A male nurse came in with an IV bag of medication and started to hang it but I stopped him. I wanted to know what it was and what it was for. He said he didn't know - he was just told to come start it into the IV. I was not kind in telling him he would not be starting anything until I knew what it was for. He went to find the doctor (one I hadn't seen and I was pretty sure hadn't seen Luke).

I disliked her the moment she walked in the room. She wanted to know who was questioning her orders. I peppered her with questions about the medication, Luke's condition, what the cause might be, etc. I wanted to know the pros and cons of the treatments and tests before I consented to anything. After many eye rolls, much shuffling of feet and my blood pressure hitting the ceiling, she said, "Ma'am, you need to understand your kid is not the only patient in this ER. I don't have time for your questions." I wasted no time in expressing my dislike for her and her conduct and I demanded a second opinion.

It took forever for the second doctor to get there. In the mean time, Nathan (who had been quiet the entire time and sleeping in his carseat) began to fuss and I took him out to nurse him. I walked to the waiting room to give an update to SD's parents. They offered to hold Nathan while I was with Luke but I declined - my mama bear instincts were running full boar and I felt I had to keep Nathan close.

The second doctor was (to my chagrin) from the Children's Clinic that I had dealt with after Luke's birth. I was not impressed, but she was, at least, a pediatrician. She agreed with the first doctor's assessment: Luke needed to be tested for meningitis as all of his other tests had come back normal. Testing for meningitis requires a spinal tap. My heart sank to the floor. My dad held me as I cried and tried to make sense of everything. It wasn't the end of the world, but to have to consent to inflict that kind of pain on your child when it was possibly unnecessary was just nerve wracking. My choices were have him tested just to be safe, or not have him tested and possibly have him die of meningitis. I consented to the test, but could not make myself be present for it. My wonderful parents held my baby as the nurses drew fluid from his spine.

A meningitis culture takes 48 hours to grow, so we were admitted to the pediatric floor. I slept in the bed with Luke on one side and Nathan on the other; trying to balance nursing Nathan and not disturbing Luke or his attachments as he'd finally fallen asleep. A nurse came in every two hours to take his temperature and check his vitals and he woke up every time. You'd think if a child is sick and needs sleep that the staff would LET THEM SLEEP! Not like he wasn't hooked up to a machine to monitor all of his vitals. (Rant over now.)

The next day was Luke's first birthday. He was drinking on his own by morning and I talked the nurse into removing the IV (after he'd had a mega dose of antibiotics, just in case). He was fussy and just wanted to be held while he slept, but the nurses kept telling us not to hold him because we would increase his fever (come to find out, the best thing you can do for a baby with a fever is put them skin to skin - it helps to regulate their body temperature and heart rate). They were pumping him with Tylenol and Motrin and he was refusing to eat. My milk finally came in that day and I walked over to Labor & Delivery and asked for a breast pump. All the hospital staff who learned what I intended to do seemed thoroughly baffled. But in my mind, breast milk was the best possible source of nutrition for a sick baby and he eagerly gulped down several ounces in a sippy cup. He improved almost immediately and I rang the nurse to try to get something for him to eat.

The nurses kept asking what kind of baby food he would eat and they just couldn't get why I didn't want baby food - Luke had been eating table food since he was six months old. He wouldn't have touched baby food. I called the cafeteria and ordered him a plate of spaghetti. I'd spotted a high chair in an unused room and brought it to Luke's room so he could eat. When the nurse walked in, I thought she'd have a stroke. There was spaghetti sauce everywhere and noodles all over the floor, but Luke was eating! Score one for Mama!

My dad came in the evening bearing cupcakes, balloons, toys, and bubbles. Luke loves his Grampa even when he's not offering gifts, but his eyes were alight with wonder at the bright colored balloons and brightly wrapped toys. We put a candle in a cupcake and sang happy birthday (which seemed to thoroughly confuse him) and clapped as Grampa "helped" him blow out the candle.

Luke gobbled down a cupcake (probably not the best idea to fill him with sugar, but he enjoyed it) and sat on the floor to play with the new toys. He even ventured to take a few wobbly steps between Grampa and me! But the fun was short lived as a nurse came in bearing a loaded syringe (more high powered antibiotics) and I held him while she jabbed his little thigh. He cried, I cried, and we rocked in the chair until the tears were gone. Luke crawled over and climbed up in his Grampa's lap and promptly fell asleep. And so did Grampa.

We were in the hospital with Luke for a total of three days. SD was rarely there, but that was probably for the best. The test came back negative and we were discharged with a prescription for more antibiotics "just in case". I never filled it - I was pretty sure his little body had had all the antibiotics it could stand.

The next day, my mom and I took Luke to a doctor in the next city who practices several forms of homeopathic medicine - among them are chiropractic, herbology, and kinesiology. He assessed Luke and determined that those first several months of his life were harder on him than we realized - his poor little liver was so backed up with toxins from the various formulas and medications he'd been on that his body sparked a fever to try and burn them off. A fever is the body's way of dealing with things like toxins - the problem came when Luke slept for several hours without waking to eat or drink causing his body to become dehydrated; eventually resulting in a febrile seizure. The doctor recommended feeding Luke a strictly organic diet with very limited exposure to processed foods even if they were organic.

The next few weeks were rough. I had a newborn (though thankfully, a rather quiet one) and Luke cried constantly. By the end of the first week after his hospitalization, he was not only crying but also banging his head on the floor, the wall, a toy - whatever he could get his hands on. He would bang so hard he made bruises. His regular doctor told me it was just a little boy phase and it would pass, but my gut told me there was something more - I'd never seen a child inflict such injuries on himself. I wanted a different answer. I took him to the CranioSacral Therapist he'd seen as a baby, just hoping he would be able to help.

Kevin, the therapist, quickly came to the conclusion that Luke's cerebral fluid was very low. In doing the spinal tap, the hospital had extracted as much fluid as they would have for an adult! No wonder Luke banged his head! He was probably experiencing migraine-type pain, sensitivity to light and sound, nausea, and difficulty sleeping. Unfortunately, there isn't much that can be done for low fluid except to increase his electrolyte intake and make sure he got plenty to drink. Kevin also recommended a little caffeine for those times when Luke seemed to be beyond himself in pain. And he was right - after several days of feeding Luke super salty foods and a little caffeine here and there, he bounced back. He was my happy, smiling little cherub again! Praise God!

We celebrated Luke's first birthday with a chocolate cake, ice cream, and lots of friends and family. There was an air of thankfulness about the celebration - you never realize how fragile life is until you come to the brink of losing it. Although Luke was really not in danger of losing his life, he so easily could have been and I thank God for watching over us.

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