Seattle Update #1

It's been a whirlwind of adventure in Seattle!

We spent yesterday walking through the University District, finally trekking up to Seattle Children's for Timothy's pre-anesthesia appointment. (The hotel shuttle we had been counting on didn't have a car seat for Timothy, so we took the 2-mile journey by foot - always fun with big hills, two kids, and a loaded stroller!) We didn't have a whole lot planned for the day and the Seattle rains stayed at bay, so it all worked out. While there, the Ronald McDonald House let us know that a room had opened up. So, we spent last night moving all of our things out of the hotel and setting up Timothy's "hospital" again. (Well, okay, Shannon moved most of the stuff.) Props to all those trach parents who travel regularly with their kids! We had always imagined it would be cumbersome, but now know from experience how much work it really is. Still, it is worth it - our new landing pad is MUCH closer and has free home cooked dinners, a play room for the kids, a loaded pantry, laundry, and saves us over $100 per night. Praise God for His provision!

Today we met with Dr. Perkins. After getting to see Timothy in person, he recommended a more conservative approach than originally planned. So, we decided forego the epiglottis portion of his surgery. Instead, he made a couple of "snips" in the area around his epiglottis in hopes of widening up the opening. Other than that, Timothy is now minus his tonsils and adenoids, and that's about it. Dr. Perkins wants to see how he fares over the next 6 months with the extra room today's procedure will add to his airway. There is a slight possibility that as Timothy grows, this intervention may be all that is necessary to get his trach out. Of course, there is also the more likely possibility that he will need more procedures in the airway; only time will tell. Still, we all agreed that doing less now and waiting to see what happens would be a better approach for Timothy. Why put him through more than he might need?

Dr. Perkins also recommended, at some point, surgery on the remaining mass that disfigures the left side of Timothy's face. Since this surgery is more "cosmetic" in nature (rather than functional such as eliminating the need for an artificial airway), we have been inclined to wait. That type of procedure would be more involved (i.e., longer in the OR) and require a longer stay for us (about two weeks) so would not have been an option today anyway.

Today's surgery went well and only started about an hour late (are they ever on time?). It lasted about an hour and a half. Right now Timothy is sleeping, so we will see how things go after he awakes. He had a rough time in the post-anesthesia unit, but I don't know if it was the steroid he was reacting to (he does horrible with steroids!), or pain, or disorientation, or whatever else goes through the mind of a two-year-old waking up from surgery.

For the long haul, Dr. Perkins is optimistic about the treatability of Timothy's lymphatic malformation (both in terms of trach removal and improving his appearance), and seems to have a great team behind him. He is also training up a doctor to come to Kaiser in Los Angeles (hopefully by August) so we could have a local contact for emergencies and in-between visits!

We are so thankful for all the prayers that we know have been lifted up on Timothy's behalf during this time. Our most recent memory verse for Isaiah's Sunday school has been Joshua 1:9, "Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go." We know that God has been with us and has been our strenth, and we pray that as Timothy grows he would make God his personal strength as well.