I am so thrilled to be here in my own home today. They *finally* released Matt yesterday around 4 p.m. We knew they were working on getting him released, which is why I didn't update yesterday. Then, by the time we got everyone home and fed, we were all so tired we just fell into bed and had a great night's sleep.
Matt has just slept like a log. Even as a patient, in a 'real' bed, you just don't sleep well in a hospital. I think it will be great for Matt to have a week or so recovering and resting in his own bed. I am still a little bit nervous about being in charge of his care. I need a schedule to keep track of his medications (medications for a kid who seldom even had Tylenol before two weeks ago)! Warren and I were laughing about all the times we had taken home newborn babies (well, all 4 of them). It's always scary knowing that you are in complete charge of this little person. I feel SO MUCH MORE stressed about taking care of Matt. I worry about forgetting a medication, not noticing a sign of something wrong, not being able to call in a doctor or nurse for every little question, and just keeping him comfortable. I know this aspect will only get harder as he has more and more medications.
We met with a Neuro-oncologist yesterday. There is no treatment plan as of yet. Matthew needs a little while to heal from the surgery. They are having a big 'team meeting' on Friday to talk about Matthew's treatment and care. I guess there will be some debate about whether he should have a combination of chemo/radiation, or if they might just try chemo. Radiation is damaging to a child and his tumors are so widespread that they are worried about damage to all the surrounding tissues. I'm anxious to see what they will recommend, and then what our 2nd opinion will recommend.
For now, though, we are just enjoying our time together in our home. It is so wonderful to be here!