After 21 days in the hospital, we were finally able to bring baby home yesterday. He is now happily relaxing at home, and we even managed to take him for a walk around the park this afternoon. It's good to finally be home.
Altogether, Silas spent 19 days in the pediatric intensive care unit and had two surgeries during his time at UCSF -- Chiari decompression and a tracheostomy. He also celebrated his 5-month birthday, his first Easter, and the passage of the landmark health care reform bill that lifted his lifetime insurance limit (not a moment too soon -- the PICU costs $20,000 a night).
Typically, kids who have a trach put in need to stay about 10 days after their surgery so that they can have their first trach change by ENT surgeons, who ensure that the trach has set properly and train the parents to perform routine trach changes on their own. In order to be discharged, we both had to be trained to clean, maintain and change Silas's trach. We also had to get trained in how to handle potential emergencies (which we'd list but we don't want to scare off any potential baby sitters out there).
On Silas's last day in the hospital, we got cleared to take him for a walk around the floor in a special wagon equipped with a monitor. He had his first taste of the outdoors in three weeks and was fascinated with his first glimpse of spring.
Cookie Monster volunteered to undergo a tracheostomy, which is an elective procedure in the stuffed animal kingdom.
Silas's last few days in the hospital were slow but challenging. Both mom and dad started coming down with bugs of their own, and Silas started having problems keeping his food and his medicine down, so we began pushing the boundaries of our already limited wardrobes.
One final hurdle was arranging for all of Silas's equipment for home care. He needs to be on oxygen at night, at least for the first month we're home, and he has to be on a pulse-oximeter when he's sleeping. Then there's the suction equipment for the home and a portable one for the stroller and boxes and boxes of supplies. Let's just say wilderness backpacking is off the calendar for this year. (We spent more time getting ready for our walk in the park this afternoon than we spent actually walking.) Also, just as a side note, the oxygen compressor is so loud that we had to move it downstairs and attach a 30-foot hose. It is seriously ear-splitting -- definitely worth a visit for the pure novelty (I'm not kidding, it's like having a lawnmower in the house).
Silas will miss his doctors and nurses at UCSF, and we know they'll miss him too. Many of them came to visit us on our last day just to say good bye. Since we occupied the same room for three weeks we built up a reputation for having a cute baby and a cool place to hang out (usually with some homemade snacks). Here's Silas with Dr. Brown, a resident who cared for him since he arrived in the PICU.
Silas is happy to be home again. Grandma is here from San Diego to help us get resettled, and we are starting to get caught up on sleep again. Uncle Dave made a delicious dinner for us tonight, and Silas's cousins made us a fun sign that greeted us when we got home. It's so nice to have help as we adjust to our new lives here. We came home to an apartment that looked eerily like it did the night we left in the ambulance, only with three extra weeks' dust. All around are reminders of how we had learned to adjust to Silas's breathing difficulties: a towel roll that we put under his shoulders to keep open his airway and relieve his stridor while he slept, the makeshift bed we made for him between us on our bed so we could keep a close eye on his apnea. All of this seems a distant memory as we watch our silent baby boy breathing deeply and sleeping peacefully once again. The joy of each breath is tempered by our longing to hear his voice again.
Thanks everyone for all of your prayers and support during our stay in the hospital. It's good to be home.
