Extubation

As of about 11:30 this morning, Anna has been successfully breathing room air on her own.  Good news.  However, I've learned my lessons about getting too hopeful.  Anna still needs to have a successful night and sedation experience tomorrow with her radiation.  There doesn't seem to be much concern about her ability to breath independently through these experiences, but after our recent experiences we're more cautious with our feelings.

This morning we had to make hard decisions again.  Not  knowing how Anna was going to do upon waking up, we re-instituted the Do Not Resuscitate order.  We decided that if the main tumor had not shrunk enough to let her manage her own breathing during the past week, we did not want Anna to have to experience more pain and discomfort.  Before we made that decision, we prayed very hard about how we did not want to have this kind of control over our daughter's life and we asked for very clear signs to show us what path to take.

God answered that prayer.  Anna woke up full of "spunk", to put it kindly.  Imagine your child having the kind of tantrum for which they would be sent to their room to cool off, except you can't exactly use that strategy in this kind of situation.  It took Anna a very long time to relax and settle.  In fact, she may not exactly be settled yet.  Being on the kinds of medicines she was on, at the levels she was on, for as long as she was on them, will take time for her body to adjust to life without them.

The good part about Anna's spunk was that the doctors were very clear very quickly that Anna's airways were safe and she could handle her own breathing processes.  They were also able to get a good neurological exam; Anna probably has more control and strength in all of her extremities than she has had in a few weeks.

The bad part about Anna's spunk was that as her parents, we had to deal with a very uncomfortable, very (understandably) crabby, very medicated, very frustrated 6 year old.  We had a long day, filled with many different emotions, and it started long before Anna was actually awake.

This evening we removed the Do Not Resuscitate order.  As we're learning, decisions are made based on the information available at the time, and those decisions can and will change when more information becomes available.  No one really expected Anna to have made the kind of improvements during that past week that she has made.  It certainly gives us hope, but like I said earlier, we're beginning to be more cautious about hope.  No parent should have to go through these kinds of experiences or have to make these kinds of decisions.

Now that Anna is awake, we're going back to our nights at the hospital.  Matt is there tonight and I'll be heading that way tomorrow morning after Melissa gets here to watch Kate and Ethan.

Speaking of Ethan (and Melissa), he had his 15 month check-up this afternoon.  Apparently, the nurse practitioner they saw was concerned that we weren't reading enough books to him and that he wouldn't learn how to talk.  I guess this particular nurse doesn't know our family very well :)

Historically on this blog, I like to keep a record of these kinds of check-ups, so here are Ethan's statistics.  Height - 32" (77%); Weight 27 lbs. 12 oz. (96%); Head Circumference - 49 cm (95%).  These are pretty typical for our kiddos at this age.  Big heads, a little tall, and full of rolls.  We're not worried about the rolls.  Ethan eats a variety of healthy foods and gets lots of physical activity.  He'll stretch out as he gets older; they all do.

Time for prayers

Thanksgiving
Please praise God that Anna is safely breathing room air on her own; that's a miracle in itself.
Please thank God for a healthy check-up for Ethan.
Please give thanks for the exceptional care Anna has been receiving.  Matt and I have also been well taken care of at the hospital, especially on days like today.
Please thank God for hope.

Requests
Please ask God to help Anna feel more comfortable.  We know it's coming, we would just like it to come sooner rather than later.
Please pray that the short term side effects to the radiation and chemotherapy Anna is receiving are minimal; she's already been through a lot.
Please pray for wisdom and guidance for Matt (tonight) and me (tomorrow) as we help Anna adjust to being awake, instead of sedated.
Please pray for Anna's safety and well-being during her first non-intubated radiation treatment tomorrow.
Please pray for rest for Anna's care staff; today was tough on them, too.
Please pray for Kate and Ethan; this whole thing is rough on them.
Please pray for a restful night's sleep for Matt and me; we haven't slept much the last few nights.

Thank you all again for your thoughts and prayers.  God can work miracles; we've already experienced some.