Before the Birth
   Background
   The Diagnosis
   Doctor Switch #1
   The Tests
   The Roller Coaster Ride
   Doctor Switch #2
   The Final Switch and Hope At Last
 
Updates After Owen's Birth
      The Birth
      At the Hospital
      Home At Last
      Shunt Replacement
      Progress (5/3/2007)
      Progress (8/4/2007)
      Progress (10/28/2007)
 
 
      Progress (11/26/2007)
      Progress (12/6/2007)
      Progress (1/21/2008)
      Progress (2/20/2008)
      Progress (3/20/2008)
      Progress (4/14/2008)
      Progress (5/9/2008)
 
 
      Progress (6/2/2008)
      June 2008 Infection
      Progress (8/17/2008)
      Progress (9/12/2008)
      Progress (9/16/2008)
             
 
April 14, 2008 - A Scary Weekend
This story has a happy ending. I thought I should start with that so that you didn't worry about that through the whole reading. I want to type this up tonight so that I can then try to forget the whole experience. It's important to tell the story because it's something that can happen when a baby has a big head, or is still too little to sit up. But it's not something that I want to have to think about again in detail in a few days to write about it.

This weekend we received another miracle for Owen. On Saturday he ate his lunch just fine and then snuggled up with me and fell asleep for a nap. He was healthy and happy. After he fell asleep I put him in his crib, grabbed the baby monitor and headed outside to do some work in the garden while he napped. After only about 30-45 minutes I thought I heard him stirring on the monitor. This seemed odd because he usually sleeps for at least an hour and a half, and often more than two hours. But I decided to go in and check on him anyway. Figuring that my work time was done, I went and put the wheelbarrow I had been using away because it was supposed to rain later that day.

I headed back into the house and went up to check on Owen. It was clear as soon as I saw him that something was wrong. His color wasn't right, he was somewhat blue, he wasn't breathing right, his heart was pounding and his head was in a pool of vomit. I picked him up and he was limp. I tried to put his head over my shoulder in the burping position to let him cough and he immediately threw up again and sucked some of it back in when trying to breath. I laid him down on his left side, like you would for a person that was drowning and gave him the baby mini-heimlich and a whole bunch of stuff came out. I couldn't tell if he was just throwing up again or if he had managed to clear out his airway a bit. Then I sat him up again and he did cough a few times. But his breathing still wasn't right. It was 5 - 10 seconds between each breath and it was a gasp each time. I put him on the floor on his side again and called my husband on the intercom to tell him that something was wrong with Owen.

When my husband came in, I had Owen stretched out on the floor on his side. He was still breathing on his own, but still very slowly in gasps. We brought him downstairs and kept putting him up on our shoulders to let him cough and then putting him on his side on his changing table to keep his airway straight. His pupils were responsive, but we still couldn't get him to wake up and he had only minimally moved his arm once on his own. His arms and legs just flopped when we let them go. He had thrown up a few more times and he just wasn't improving so I called 911. It's a volunteer rescue squad, and when my brother recently had a bad accident with a compound leg fracture, he had to wait for over an hour for them to come. So after 10 minutes I called them back to see if they were on their way, or we were going to get in the car. Thankfully they arrived within about 15 minutes. My brother only lives about 30 seconds away on the same road as us and he came up at light speed to take our daughter while we went to the hospital with Owen.

They took him to the nearest hospital, which we knew couldn't handle pediatric cases long term, but had the benefit of being close. I rode with Owen in the ambulance and on the way there Owen still would not wake up and only gave minimal responses to stimulation. Once we were in the ambulance they put an oxygen mask near his face to help him breathe. They filled out some paperwork so that they could get the right things set up at the hospital before we got there. Then they put a pulse-ox meter on his to measure his oxygen level. His oxygen was only at 79 percent, so the EMT started bagging the oxygen instead. All the way to the hospital he never woke up.

When we arrived at the hospital I carried him in to the emergency room. He did wimper a little bit when I brought him out into the sun, which made me feel a little bit better. The emergency room people at Lewis-Gale hospital were amazing. They were ready and waiting in the room when we got there. Within seconds they had the oxygen back going and within minutes they had the breathing tube (aka ventilator) inserted and running. Doctors were taking blood samples, administering drugs and doing all sorts of things. A chest x-ray was done to see if there was anything in his lungs. They suctioned out his trachea and removed a bunch of stuff that was blocking his airway. In a lull I went over and tried to touch Owen under the mass of blankets they had on him. He had started shaking and they announced that his body temperature was 95.3. The doctor paused to say, "I'm sure I don't have to tell you that we have one very sick boy."

The most hopeful moment we had at this time was when they tried to put the breathing tube in and Owen started to fight them. They ended up needing to sedate him in order to get the tube in. We didn't know whether to root for him to fight knowing that it meant that he was alive and had enough brain power to realize that he didn't like what was happening, or to wish that he'd calm down so that they could get the tube in.

Once they had his oxygen levels stabilized they wheeled him out of the room to do a CT scan to see if it was a shunt problem.

The people at Lewis-Gale were awesome and the stop there probably saved his life, but they are not equipped for critical care of small children. So it was back onto an ambulance to be transferred to Carilion Roanoke Memorial Hospital which has a Children's Hospital with a PICU (Pediatric Intensive Care Unit). It's about 20 minutes between the two hospitals - unless you're in an ambulance doing 80mph. My husband rode with Owen in the ambulance this time and somehow I managed to beat them there when I drove over to meet them. Again they had everything ready and waiting. This was the same team that was responsible for transferring me and Owen down to Duke while I was in labor and they are amazing.

They kicked my husband and I out when they got there because there wasn't enough room in Owen's room for the transport team and the new team. We had to wait until the transport guys left to go in and see him. That was a very long 10 minutes. When we went in Owen was resting comfortably and his color was much better. The ventilator was still doing most of his breathing though, he wasn't assisting very much himself. The doctor came in and got some history from us, but had to leave as another critical case was coming in and Owen was stable. Roanoke Memorial is the only trauma center and PICU and NICU for a pretty wide radius and so they are very busy. The doctor asked for Owen's most recent CT scan, which I had forgotten to grab and then said he'd be back when the new kid was stable. I had to call my brother and ask him to bring the scans for us.

So we waited with Owen. More people came and asked us more questions. Does he have a history of seizures - No. What is his normal mental status, is he normally this unresponsive - No, he's normally quite lively. Does he have a history of seizures - No Again.

Eventually the doctor came back and this is when things started looking up. He showed us Owen's CT scan and it was clear that his shunt was still working. Then we asked about the thing that was worrying us the most. What were the chances of brain damage given how poorly he was breathing for so long? The doctor said that the fact that Owen's heart was pounding was a great sign. His body was distributing what oxygen it had and was making the most of what breaths he was taking. They had also taken a blood sample as soon as we had gotten to Lewis-Gale. They were looking for something called respitory acidosis. When a person is not getting enough oxygen the amount of carbon dioxide begins to build up in their system and then starts to dissolve in the bloodstream. When this happens the pH of the blood gets lower and lower. This is not a condition that is resolved quickly with a few good breaths. Had Owen's body been seriously deprived of oxygen for any length of time, this test, known as a blood gas test, would have shown a decrease in the pH of his blood. Thankfully the doctor said that the pH in the tests taken both at Lewis-Gale and at Roanoke Memorial were fine. So those breaths every few seconds were enough. He felt that brain damage due to a lack of oxygen was unlikely. I think we could have flown on clouds after getting that news.

Next our attention was put on the CT scans that my brother had zoomed to the hospital. It was pretty clear that they were about the same as the previous scans and so a shunt failure was ruled out. We didn't think that was the case anyway, his fontanelle was still sinking when upright and shunt failures are generally much more gradual than this.

OK, no brain damage and shunt is functioning, now we move onto what the focus will be for the next two days. Because Owen was shaking after we got to the first hospital they started thinking it was a seizure. Children with hydrocephalus are at a high risk for seizures. We know this. But we also know that they generally start by the time the child is six months old (according to Owen's neurologist) and Owen had never had a seizure. It is possible for them to start at any time though, so it wasn't out of the question. Repeatedly we were asked if he had a history of seizures and then asked again and again if he was stiff or twitching when I found him. No, he was a rag doll when I found him with no movement at all.

This whole thing started about 3:00 PM. By the time he was stable and resting at Roanoke Memorial it was about 6:30 PM. Whew! Every time I looked at a clock I was shocked. I wasn't sure if I was shocked that it was so late or that it was so early. Time was just really munged up. My Mom and Dad live in New York and had their bags packed just in case we were going to be in the hospital for a prolonged period. Prayers had been said, said again, then repeated frantically. By this time we knew that our prayers (and those of our family and friends) had been answered. Owen was going to be OK. But we still hadn't seen him wake up and respond to us and until then we were going to keep on praying.

As the hours went by the nurse taught us how to read the monitor on the ventilator. A purple line at the beginning of the curve meant a breath that Owen initiated, a blue one meant one that the ventilator took entirely for him. More and more breaths started having purple lines and his body temperature had come back up to normal. I called his sister and told her that her brother was doing much better. In a stroke of genius my sister-in-law had thought to call our neighbor who has a daughter that is only a month younger than Owen's sister Sammy. She came over to play and distract Sammy from worrying about her brother. That was about 8:30pm. By this time the doctor had come back in and saw that Owen was initiating most of his breaths on his own. So he turned down the rate on the ventilator to see if Owen could pick up breathing on his own. He was able to do so and within about an hour the doctor said that whenever Owen woke up they could take the breathing tube out. Owen was resting comfortably, so we just let him sleep.

Shortly after 10:00pm he started to wake up and immediately started to try and get the tube out. So they obliged him and took the tube out for him. His first breaths were somewhat labored and fast, but his oxygen levels never dropped. He was able to sit in my lap for a while and his breathing became more and more sure. He was very fussy though and they said that we could try feeding him a bottle. They started out trying Pedialite which he just pushed away. Then they tried apple juice and he wouldn't have any of that. So we said that what he really wanted was a fruit yogurt drink that he just loves. That's not usually on the menu right after sedation, but they couldn't get him to drink anything else (which is normal, he's picky about his drinks) so they let us give it a try. He drank down the whole thing. He would have taken more, but we thought we should stop at one to see how well it stayed down. He did look at us and he was trying to reach out and grab the ID tags on the nurse and held a toy. He was pretty groggy though and pretty soon he went back to sleep. At this point we called the grandparents to tell them the good news that the breathing tube was out and then we tried to get some sleep ourselves.

Owen slept from about 12:30am to 5:30am, when he woke up very hungry. He drank three bottles of yogurt drink and then ate a little bit of solid food. He played with more toys and was more Owen-like. The problem was that they had an IV in his left arm and he wasn't happy about that. He couldn't easily hold his own bottle, he couldn't manipulate his toys and worst of all, he couldn't suck on his left index finger. Without his "comfort finger" there was no keeping him calm. The IV wasn't actually in use. They had not been able to get an IV in his arm originally, so they had put one in the big vein that goes down the side of his head. That was the IV that they were actually using to put in fluids. The nurse got permission to remove the IV in his arm and then Owen's mood improved considerably. He was able to play and to suck on his finger and he was content.

At 10:00am (Sunday now), they came in to do an EEG to see if there was any seizure activity. We were to find out later that if a person has a seizure it takes some time for the brain to "calm down". Since the EEG was taken within 24 hours it should have shown unusual activity if a seizure had occurred. The problem was that the pediatric neurologist isn't on call on the weekend. So even though the EEG had been done, it wasn't going to be read until Monday and possibly not until Monday evening when the neurologist finished his normal office hours. Luckily the neurologist is the guy that we have been taking Owen to every 6 months just to keep him familiar with Owen. Unluckily they would not release Owen from the hospital until the EEG had been read.

After the EEG Owen's Aunt and Uncle came by with his sister. She was happy to see him and see that he was doing well. She's only five and a half, but she loves her brother dearly and worries about him endlessly when things aren't going quite right. Sammy stayed with us for the rest of the afternoon until Daddy went home with her. Mommy spent the night with Owen in the hospital.

The night with Owen went fairly well. They had a few minutes when they thought his temperature might be too low, but the doctor came in and felt his hands and feet and said that he was fine. They took his temperature again an hour or so later and it was fine. There was some confusion for a little while as they tried to figure out why his pulse-ox meter wasn't showing up on the monitors at the nurse's station. But other than that he slept through until 4:30am. I snuggled with him for a bit and he went back to sleep on and off until 7:00am.

So it's now Monday morning. Owen is definitely more his usual self, but he was also very unhappy with being at the hospital and being poked at. We walked him around and around in the stoller, waiting for the word from the neurologist. The resident this morning took pity on us and called the neurologist and got him to look at the EEG in between patients. He also scared us because he started out asking again if this was like Owen's previous seizures. When I said that Owen had never had a seizure before he seemed a bit surprised. He said that from the notes that he had read he had been led to believe that Owen had had seizures in the past. He also seemed to be under the impression that Owen was shaking when I found him, not 45 minutes later at the hospital after his body temperature plummetted. After we cleared that up he made an obvious effort to get in touch with the neurologist because he felt that it probably wasn't a seizure and that we shouldn't be waiting for nothing.

So at 2:00pm we got the news that we were waiting for. The EEG was clean with no sign of seizure activity. He had simply thrown up and because he can't lift his head he wasn't able to get his face clear of the mess. **Note - I feel now, a little over three years later, that I need to go back and make a note here. Later experience would show us that this WAS a seizure and that this pattern of throwing up and then having trouble breathing was the pattern that he would repeat over and over again as the years progressed. We have learned that seizures come in all shapes and sizes.**

We were cleared to leave the hospital. When we got Owen home he was a little fussy at first, but then he started playing with his own toys and rolling around on his own floor. He laughed and laughed and smiled. All through the evening he found joy in every toy that he rediscovered. I gave him a bath to clean him up from everything that was done at the hospital and he laughed and splashed and made a glorious mess with the water. And then you remember why this is all worth it and these pictures that I took tonight say it all:

  


Other than that we are waiting for an MRI on April 29th to determine if he has the appropriate nerve endings and a properly shaped cochlea for a cochlear implant.

Thanks to all who helped us through this weekend with prayers, good wishes and logistical support. We couldn't have made it without you.
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