Phoenix!

So many people came by today, looked in Parker's room and said, "Oh my God, what a difference a few days make!" Nurses we've had before, respiratory therapists, pharmacists, physical therapists, cleaning crew, doctors who are not part of Parker's team, the Social Worker .... So many people who cannot believe how Parker beat the odds time and time again. One person said to him, "You're a legend around here you know!" The surgeon walked in tonight and said, "I thought I was in the wrong room for a minute!"

Parker made great strides this weekend. He sat up again today, unassisted, for 6 minutes (meaning no one balancing or even touching him, all on his own!). His guts started working and the NG tube was capped off, the tube feedings started up again, without - so far - any bad effects. He still has horrible thrush in his mouth (part of the yeast infection from the picc line), so badly that he begs for water. Until late this afternoon he was only allowed ice chips.

Parker has had a highly emotional few days. Nurse Monica told us he will have to go through a grieving process, like he is in mourning. And the more he discovers about what happened to him, the more emotional he gets. We have been instructed to be honest with him when he asked questions, so last night when he asked James what the worst part was, James told him it was the two times they told us we were losing him. Parker was stunned by this news. I had sort of told him already, but he was more sedated and doesn't remember. James called and asked me to come back over to talk to him, which I did.

Typical of his sensitivity, Parker's main concern was that I had to go through that, to be told he was dying and to be here all alone when it happened. His heart was breaking at the thought. Somehow I was able to stay calm and collected when I talked to him late into the night about everything, even though I personally haven't been able to deal with it myself. It is amazing what we will do for our children. After some more discussion, we agreed that the best next step was for Parker to have an appointment with Dr. Burg, the hospital psychologist.I am his mother, and I'm too close to his pain with my own agony to help him effectively. Or without terrifying him even more.

There is so much to do. He still has so far to go. But his body is healing. His spirit is as strong as ever. He has visions of returning to work someday, of walking to his mailbox to collect his mail, of taking a shower in his own bathroom and waking up in his own bed. Of driving his car, and sending an email. And of calling me to say, Hey, I'm on my way to work, Just checking in. How are you?

Slaying Dragons

This is a photo of one of Parker's old football coaches, Scott Murphy, who is now the principal at the middle school Parker attended in MD. Coach/Principal Murphy was being taped to the wall by the students he had challenged to raise money for charity. He said once he was attached to the wall and they pulled the chair away it was scarier than he expected. But it goes to show, you do things for your kids. Whether you are their parent, their coach, their principal.... we do things for our kids.

I'm almost afraid to write this because I am afraid I might jinx it. Today the Critical Care Unit manager, Francis, came to see me with her counterpart, Mary. They wanted to get feedback from me, since I have been a permanent fixture in the halls of the ICU for so long now (Sunday marked the two month anniversary since Parker first went into the hospital, and Wednesday marks the one month anniversary that he has been in the CCU.) Durung the conversation they started talking about when he moves to Intermediate Care. WHEN!

I asked what the criteria would be for him to be moved, because to look at him you can see his life is still being sustained by machines and medicine. Francis said the primary goal would be for him to be breathing on his own, without needing to rest on the ventilator, for a certain length of time. He would have to have been fever free for several more days, his heart rate would need to remain stable, and he would need to continue to make progress in his physical therapy.

Oh, I meant to start out by saying he sat up, unassisted except for balance, for SIX MINUTES today!!!!

I asked about the fact that he still has the NG tube sucking bile and acids out before they have a chance to build up in his stomach and she said he can go to IMC with that. I asked about the fact that his abdomen is still wide open, covered by a wound-vac with a drain coming out that removes the fluid so it doesn't build up and turn into Abdominal Compartment Syndrome (see post from the worst day of my life, April 14th). Francis said that is up to Dr. Garcia, the surgeon, but Parker might even go home AND return to work with that thing attached to him, draining fluid into a little bag he would carry around with him. That really creeped me out.

I asked about the additional 14 liters of fluid he is carrying that the Lasix is helping get off his body. She said no problem, they can manage that upstairs. I asked about the VRE bacterial infection and the fact that he is in isolation. No problem, he can be in isolation up there too. I asked about the three braod spectrum antibiotics he gets IV plus the two anti-fungal from the yeast infection he got in the picc line. No problem. I asked about the fact that we couldn't get a good CT scan, and she said she would look into that (because I don't want to go anywhere without a CT scan assuring us there are no more infected cysts building on the pancreas). I asked about the insulin drip he is still on because of the infected pancreas, and about all the other things that are wrong.

In the end she said it is up to the pulmonary doctors (aka: Critical Care doctors) and his surgeon, but there is a possibility he may be ready to make that move at the end of the week!!! It feels scary and exciting at the same time. It also seems unrealistic to me and I suspect Francis wanted to give me lots of time to think about it.

Is there anything we can do for you to help you with the possibility of this transition? Francis asked me.

Yes, may we please request a room with a view?