Shelby's First Facebook Update on Robbie

Sunday, December 21, 2008


This photo of Ken and Robbie was taken a couple of weeks before Robbie's illness.

This photo of Ken and Robbie was taken a couple of weeks before Robbie's illness.

First, Dad was sick with a bad stomach virus, then Robbie got that and fever. Then we thought he had strep, then we thought he had Herpangina (similar to hand, foot & mouth disease], with lots of sores in his mouth, lesions. He has been sick for about 10 days by now. He's been running fever off and on, and not eating much. When they weighed him in, Mom said he'd lost nine pounds because he's not eaten hardly at all. Then he was becoming very lethargic, and wanting to sleep a lot. And then he started suffering with lots of pain, in the neck, leg and hip. Then he began trembling all over, from being so weak as well. He then complained about pain all over, his neck was really stiff and stuff. Then he couldn't talk well at all, we could hardly understand him, and he also started drooling, and his toes started curling up because of cramping. Then we were advised to go to Children's Hospital, so we hopped in the car really fast. 

The next three hours the cramping, pain, and drooling got worse. His legs also started shaking in the hospital. They did three hours of evaluation, and taking history, of what his sickness had been, and where we had traveled over the last year. Because we'd been abroad so much, they called in infectious disease doctors, and ran tons of blood-work tests. The doctors decided to go ahead and give him Morphine for his pain, and put an IV to begin fluids. They decided that they needed to do an MRI and a spinal tap. They were able to sedate him for both, and within three hours realized that there was some swelling on the brain. At that point they began treating him as if he had both meningitis and encephalitis. But the spinal fluid test is not back yet, and they don't know if it is a viral or bacterial infection. Because, even on the morphine, his legs are cramping and toes are curling, they suspect that there could neurological damage. It's mainly on the right side, on his legs, but occasionally on the left side also. He seems to be suffering with all over muscle pains in his body. They also swabbed the lesions in his mouth to find out what they are. 

When they find out about the spinal fluid, and it confirms whether it is both meningitis and encephalitis, or one of them, they'll either take away medicine or continue giving him medicine. He's in ICU, and will be in there for two more days, and this morning they also put him into Isolation, which means he can't have visitors. Isolation is to protect both his immune system, and to protect others depending on what his diagnosis is. The last thing we've heard was that he would be there until they get the blood-work back. There's a team of doctors, including the Chief Resident of the Hospital, the Infectious Diseases doctor, Neurology doctors, and Pediatric Internal Medicine Doctors. There's probably more that we don't know of working on him, so that's a great blessing! There's another doctor that normally doesn't come in on the weekends, that is coming in for Robbie. Okay, now this is the update: Last night Robbie was diagnosed to certainly have encephalitis, and still might have meningitis, all the test stuff hasn't come back yet. Encephalitis is when the brain tissue has the infection, while meningitis is when the brain itself has the infection (or something like that). Good news is that since the IV has gone in him he has gotten stronger, he was really dehydrated. But they had to put a feeding tube in through his nose, and that really upset him. He was in conscious sedation while they put it in. Mom said that she couldn't hold his arms down, he was trying desperately to fight and get the tube out, so they dosed him with more morphine. That's good that he's that strong, but sad that it freaks him out so much. The doctor's are wearing Mom and Dad out with their history questions. One question was, "Did you ever run a fever during your pregnancy with Robbie?" Mom was clueless to that one! Pray for Mom too, because she is really not getting enough sleep and is really upset herself, for various reasons. Dad isn't getting much sleep either, the bed they gave them is a little too small for him. My entire extended family, and many friends, and people we don't know are doing everything they can to help us here! I pray blessings over all you servants! It is hard to see him in pain. When he couldn't talk, and realized that he couldn't, we saw that he was upset through his facial expressions. It's hard on him too, and a lot of times, looking at all of the machines around him, he gets scared of what's going on. He was scared before we even went to the hospital. My grandparents (both sets) are very stressed right now. It was VERY hard to see both of them cry. When my Papaw went in to see Robbie, I was told that Robbie mouthed the words, I love you, to him. There's been sweet moments like that. When my Uncle Robbie went in, Robbie's namesake, Robbie tried to sit up and be tough to give him a hug. My other set of Grandparents were vacationing in Germany and they're flying back three weeks early, pray for their safe travels. Bethany is doing good, quiet and prayerful. She's at my cousins house, and they're creating crafts and crafts and tons of cards to send to Robbie! Some of them are very cute! Bethany's card was decorated to look like a present, and Katie's note said, "bless you, poor thing!" she'd been listening to her Mom comment on Robbie! Abbey got distracted and never quite finished her card, but that made it cute. When I showed them to Robbie he had just woken up so he didn't quite register what they were. Update: Yesterday Robbie's feeding tube bag ran out so the nurse replaced it. Soon afterwards he threw up, and the feeding tube didn't come out. Dad, Mom, and the nurse quickly helped him get cleaned up, but it was still quite upsetting. Robbie has been desperately asking for water to wet his mouth and throat since they got here, but they haven't wanted to give him any since he's had trouble swallowing, and throwing up. Whenever a doctor or nurse, or someone of import comes in, he pantomimes himself drinking. They have been slightly sponging his mouth, but nothing else. Finally this nurse said, let's give him some ice chips. He handled those fine, so she and a doctor agreed on letting him try it. They asked if he wanted juice, or water. He signed yes, for juice. And then said, "apple," fairly distinctly! They gave him apple juice, and he at first couldn't suck it all the way up the straw. They took it back, but he reached out desperately for it, and they let him try again. This time he plugged up his nose, and sucked. He got it up using this technique...We all wonder how he thought of it! They waited a while, and he didn't throw up, and he swallowed it well. So he's been able to drink and that was VERY encouraging! 'Round eleven pm, Robbie was moved to the neurology floor in a regular room. There is still a bed in the room so that they can take turns sleeping next to him. They were asking him what he named the bear that was given him in ICU, and they couldn't understand him. So they handed him the white-board to write on and he clearly wrote, "Stripes." This was very encouraging because his hand eye coordination and memory of alphabet is working. He is still in pain with various parts of his body, back, ankles, legs, that are bending and curling. Mom and Dad are often rubbing and massaging him.