Our first visit to Children's Hospital

We arrived at Children's hospital at about 6pm. Again, we went into the ER and we were escorted right into a room. This time it was an actual room, not just a space with a curtain around it. The staff here was calm and friendly and let us know they would be right with us and to relax as best we could, watch TV and they would be with us right away. One of the doctors came in, along with a resident, and FINALLY let us know what was going on. In the MRI, they found what is called an Arteriovenous Malformation, or AVM. He was most likely born with it, and it leaked some blood onto his brain. They told us that he was in an excellent place to be treated for this and that as soon as a room was ready for him, he would be admitted to the ICU and that we would proceed with further evaluation and come up with a treatment plan. At some point, Max felt up to watching some Sponge Bob Square Pants, and Matt was filling out medical insurance information and making calls, so as Max watched TV, I fell asleep on the bed with him. At about 8:15 or so, they told us Max was being moved to ICU and that he would likely be having tests the following morning. One of the team of surgeons (Dr. Tim Lucas. I am horrible with names, but Matt is feeding them to me as we go, here...) told us a little more about Max's condition and that they were working to get him scheduled for an angiogram first thing the next morning.

In the meantime... Max hadn't eaten since 11:30 and was fair to starving. Max is about 5'2" now and at the last weigh-in (after being so ill) was only weighing 92 lbs, so food was a priority. We got settled in ICU and I ran out for burgers. Max finally got to eat at 9pm with strict orders for no eating after midnight because he had a procedure the next day. Once Max had eaten, we all settled in to try to sleep and with hopes of an early morning procedure.

The next day we spent the morning sitting... and waiting... Matt and I got to listen in on rounds as they discussed Max's case. It was interesting, and we got to learn a little more about what was happening. Someone from the angiogram team popped her head in to let us know it would be around noon before Max would be "visiting" them, which meant another hungry morning for Max. He spent the morning thinking about stuff he wanted to eat and then sleeping. At about 1:00 (?) Max met the anesthesiologists and the Dr. who was going to do the angiogram (Dr. Kott... thanks Matt!). This is a 2 hour procedure, followed by 6 hours of Max lying flat on his back so that the femoral artery could heal from where they made an incision. Meanwhile, Matt and I got lunch and I took a shower. And then we waited. Max was finally wheeled back to his ICU room around 3:30 and he slowly woke up. The afternoon was frustrating for him as he was really tired of lying on his back. We passed the time by watching a movie, sleeping, watching TV, etc. Max finally got to eat and chose a grilled cheese sandwich, broccoli, a cupcake, ice cream AND a strawberry milkshake. I think he ate everything except the cupcake. More waiting. Waiting...

At about 6, the doctor came in to tell us that based on the angiogram, his AVM and the clot were about 3x3x6 cm and warranted surgery to remove. There are other methods, but this was his recommendation, and the most definitive course of treatment. He let us know that Max's surgery would be worked into their schedule for the week of March 13-17. He also let us know that Max would need to be seen by an Opthamologist to determine the damage done to Max's sight.

So, knowing this, they told us Max would be released Saturday morning and we could go home and.... wait for surgery week.