Silas enjoyed his first week back home after we were finally discharged from UCSF Children's Hospital on Friday, April 9. After three weeks in intensive care and two surgeries, Silas lost a lot of his muscle strength, but he is in good spirits and happy to be back home with his family and friends.
Grandma came up from San Diego to help us get settled and was a huge help. The build-up to Silas's hospitalization had taken a lot out of us -- we had been traveling back and forth to San Francisco and had a lot of tests and appointments in the weeks before he was admitted -- so our apartment was in pretty bad shape. Now it looks great. Silas now has a clean and organized room and lots of clean clothes. And mom and dad both got three good nights of sleep in a row, which was a first in we're not sure how long. It was wonderful to have her help and encouragement as we settled into our new routine here.
The biggest lifestyle change for us is Silas's trach. In addition to his regular baby routine, we now need to suction his trach several times a day and replace it once a week. Some fun things like bath time are a little trickier now since he can't be submerged in water any more. We also have to be prepared for any mishaps that might occur when we're out and about, like his trach getting pulled out or clogged. This means we need to carry around some extra equipment in his stroller and in the car. We're always armed with a portable suction machine and several suction catheters, and we have a stockpile of oxygen tanks at home and in the car. We also have an "ambu-bag" with us in case Silas needs CPR (since his trach means the regular method of blowing into his nose and mouth would not actually resuscitate him).
It took some time, but we're managing the equipment pretty well now. It's surprising how much of our old lifestyle has remained the same. We still take Silas for walks around the park and drive with him everywhere we used to go. He's visited our offices, gone to church, attended some parties, and visited with friends and family like old times.
Silas is has been making big strides developmentally. A nurse told us that a healthy adult can lose half of their muscle tone after a week in a hospital bed, so Silas's three-week stay must have set him back quite a bit. But he can do more and more every day. It's fun to watch his progress. His neck muscles are beginning to recover, and he's starting to hold his head up more. He's getting more coordinated and beginning to concentrate on his hands, reach out for toys (and our faces), and anticipate things.
One of the big changes since we've been back is that Silas now gets some new medical services. He has a home nurse named Barbara who visits each week to help out with our adjustment to the new responsibility of cleaning and changing his trach. He also now gets therapy twice a week at our local CCS (California Children's Services) office, which includes rigorous workouts in physical therapy and helpful excercises from an occupational therapist who helps Silas build his up abilities for ADL (activities for daily living). Like education, CCS was hit hard by the state budget cuts last year, so many kids with disabilities can no longer receive these services, but thankfully kids with spina bifida still qualify for state benefits (for now). We've also had home visits from our local Regional Center, the state office that coordinates the Early Start Program, which helps kids 0-3 with disabilities get special education until the local school district takes over when kids turn three. They will mainly be helping us with sign language for as long as Silas has his trach in.
One down side of being home this week has been opening the mail. Our insurance company has provided comprehensive coverage through Silas's several hospitalizations and surgeries so far, but every once and a while they throw us a curve ball. We returned home to find a letter informing Silas that only the first 19 of his 21 days in the hospital were considered "medically necessary," so he was not actually covered for the last two days of his stay. Of course, we would have liked to have known that at the time so we could have left early, but unfortunately, doctors' orders were to stay in intensive care. We're hopeful this is just a technique insurance companies use to haggle with hospitals, but it is pretty disconcerting for mom and dad caught in the middle. My favorite part is that these authorization letters are always addressed to Silas himself. This last one had an amusing line explaining how he and his doctor could choose any option they saw fit, but only medically necessary procedures would be covered. (Sometimes I wonder if they really think a five-month-old baby is participating in these decisions.) Hopefully it will be resolved soon.
Probably the hardest part of all of this is adjusting to a home without Silas's voice. We really miss it. Now that he has a trach, he is virtually silent. Instead of crying he makes a crying face, and instead of laughing he makes his laughing face. (Sometimes they look similar, so you have to go with context clues.) The baby monitor that we relied on when we were downstairs and he was sleeping upstairs doesn't help much, and it's heartbreaking to discover he's been crying when you thought he was resting or playing peacefully. He's finding new ways to communicate with us, and what's amazing is that he doesn't seem to mind. Like everything else, he just rolls with it. His patience is inspiring.
The highlight of our first week out of the hospital was being outside again and enjoying the sunshine. We've been for walks at our local park just about every day since we've been home. Silas is visibly happier when he's outside in the fresh air. It's fun to see him focus on trees and birds. He seems to be getting stronger and more aware of his surroundings every day.
All in all we've had a great first week back at home. Thanks everyone for your continued thoughts and prayers as we adjust to our new lives.
