Today is supposed to be a good day. I was up way too late last night so Patricia suggested I stay home with the boys while she runs Eli over to the Pediatrician for a weight check. I spend my morning hanging out with the boys waiting for the good news when Patricia gets back.
Around 9:30am Patricia comes home. She is extremely distressed. In fact that might be a bit of an understatement. Eli lost weight again, another ounce and then some and Dr. Shlafer said we need to take Eli to Seattle Children's Hospital. Eli is lethargic and he shouldn't be losing weight at this point. I call my Mom and tell her the bad news and ask her to come over to watch the boys. We get our things packed up and we leave for Seattle Children's.
Seattle Children's is about the last place on Earth that I ever wanted to be. I can't think of a scarier place. I love my boys and I developed an affinity for other children that started the moment I became a father. To be in a place where children are hurting and suffering is my personal definition of hell. At the same time I know we're absolutely blessed to have one of the country's best children's hospitals in our back yard. The next part of our story is about the hardest thing Patricia and I have ever had to endure. We had about 4 people buzzing around Eli nonstop from the moment we were admitted to the ER and within an hour we were rushed up to the NICU. In the short time we were in the ER they noted that Eli was having up to 10 second pauses in his breathing and he was extremely hypotonic (weak muscle tone).
In the NICU they swarmed Eli with 4 or 5 nurses and 2 doctors doing a clinical evaluation. They started an IV, drew blood, did a spinal tap, and made their general assessments. We had almost no idea what was going on but obviously there was something seriously wrong with our little boy. I had to leave while they were drawing the spinal fluid and I made the mistake of calling my boss to let him know I wouldn't be in the office the rest of the week. Needless to say it wasn't a good time for us and as a parent you're virtually helpless as you sit and watch them poking and prodding your child.
After things settled down our nurse lead us through the admission process and took a general history from us. She also explained everything that was going on which helped to calm us down a little. We got a chance to speak with some of the doctors too. Eli was presenting with Hypotonia (weak muscle tone), pauses in breathing (apnea), and he was a little dehydrated. His body temperature was also a little lower than normal. The doctors explained that they thought Eli might have an infection, either viral or bacterial, and they were going to start him on anti-biotics and anti-viral medications. The rule of thumb with an infection is hit it hard and fast and the sooner the better. They said we would know in a few days if any of the blood cultures came back positive and we could better tailor his care toward whatever he had. They took blood, urine, and spinal fluid for testing but most of the tests would take a couple days to come back. Until then they had to place us in quarantine which didn't have a big impact on us as parents but it meant that every time a nurse or doctor came into our room they had to gown up and wear a mask. They moved Eli into a single room in the NICU where we sat with him for the next couple hours trying to piece together everything that had happened today.
The timeline is a little jumbled at this point because we started to get some new things thrown at us and the shock hadn't quite worn off. They got us set up with a breast pump so Patricia could pump milk for the baby. We got a pager in case we were away from the room and they wanted to get in touch with us. There isn't a place to sleep in the NICU so they got us set up with a "sleeper room" which consists of a room big enough to hold a single bed, and we got a map of the hospital, which it turns out is actually pretty big. From there we had to wander out to the front desk to get security passes that allow us to be with Eli 24 hours a day. We also called family and friends to give them an update on what was happening.
Later that evening we got a visit from Dr. Ali Dickson, one of the residents doing her rotation in the NICU. I only mention this because Dr. Dickson really helped us through a tough time and she did it with the level of care and human compassion that we later learned can be somewhat lacking in a hospital dedicated to treating children. Don't get me wrong, all of the doctors at Seattle Children's are fantastic. I wouldn't want Eli to be treated anywhere else, but I think doctors can become a little too clinical after a while and they forget that they aren't just treating symptoms. In our case, the patient is our son and he's the embodiment of our hopes and dreams. We soon realized that the good doctors are the ones that take the time to work with you and give you hope as parents that your dreams might still be realized for your child.
Dr. Dickson got down on our level and started by asking how we were doing. She explained in simple terms what was happening and what they were looking for and she laid out a very basic plan for us. In terms of Eli's care they were looking for an infection and if it wasn't an infection then they would run some more tests. They were giving Eli fluids through the IV to get him hydrated and they had him hooked up with monitors tracking his heart rate, respiratory rate, and blood oxygen saturation. She let us know that we would be in the NICU for a few days while they ran some tests but she let us know the goal was to get Eli better so we could take him home with us. She also said they were going to do a CT scan of Eli's head and a chest x-ray to look for other issues while they waited on the blood cultures.
Sometime during the evening Patricia drove home to get sleeping bags and a change of clothes for us. I honestly have no idea where she got the strength to leave the hospital and Eli behind for even the short time it took to drive home and back. I certainly couldn't have done it. She is a much stronger person that me emotionally and spiritually and I couldn't have asked for a better mother for my children.
I don't remember what time it was when the emotional exhaustion forced us up to the sleeper room but we quickly came to the realization that 2 adults couldn't share a single bed and get any meaningful sleep. I think we settled for about 2 hours of rest before we "woke" up the next morning to face the day.
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