Parker update March 3

We had a good day with our little guy and he took some major steps towards leaving the ICU today.

It was fairly calm when we got into the room this morning and shift change had already been completed. Florence was back on the job. Florence and Gaelle seem to be the reference for all nurses in the unit and they alternate 2-3 day shifts taking care of Parker-- and us. They are very different in their style and mannerisms but both incredibly competent and reassuring.

As the intern (Than-- we just call her baby Doc) examined Parker she let us know that his shunt surgery was probably not going to happen today but that Dr. Oualha would talk to us more.

While Parker had his respiratory therapy you could see his eyes crying and his mouth opening to make the sound but nothing came out. We were starting to have a really hard time with the respirator-- it had sustained his life for so many days but now it seemed to be holding him back from progressing further. As the risk of putting it in are significant, they didn't want to take it out until after the shunt surgery and that seemed to continue being delayed.

It is clear that Dr Oualha is starting to understand that we are going to remain fairly stable regardless so he lets us in on a lot more than he did at first. It was pretty calm this morning in the ICU and he spent time testing Parker's ability to breathe, turning the respirator to its lowest settings, taking it off completely and watching Parker's chest move up and down as he forced air through the 7cm tube that had been connecting his lungs with the machine through his nose for the past 9 days. Finally he was convinced and said he would call neuro-surgery; if they couldn't guarantee the procedure would be done in the next 24 hours he was going to extubate.

At 4PM the tube came out. His little heart has been beating all by itself at between 100 and 140 beats per minute. Now his lungs, all by themselves, are expanding and retracting 20-40 times in that same minute and converting this into 98% -100% oxygenated blood.

At the same time they took the central line out of his groin and they removed the urinary catheter.

He still has wires and tubes attached to him and into him, but slowly the ties that bind him to this bed are slowly being removed.

He can't really cry yet-- he has a mega sore throat from having the tube in there but he makes some gutteral noises when he coughs or cries which remind us of Gollum from the Lord of the Rings.

The neuro surgeons are now saying that they will plan another scan early next week and determine if the shunt is still necessary and then schedule the surgery afterwards.

Dr. Oualha even offered that if everything goes well-- we may be transferred out of the ICU by the end of the week.

Even though the risks for Parker had greatly diminished, we still couldn't bring ourselves to leaving the bad news room pull-out couch over the past few days. Something about leaving your baby with people you barely know to go sleep 4 miles away didn't sit easily-- especially for Renee.

Last night Dr. Oualha was fairly insistent on us going home for the night. Renee put on her brave face, we packed up our things, and we walked out the front door of the hospital. Renee made it about 50 steps towards the motor scooter before she broke down. After some coaxing she finally made it all the way across the street and got on with the promise that we could turn around after we got home if she could not bear it. We got home, I raced to get something to eat and jump in the shower before Renee decided that we had to go back. Then I jumped in bed hoping I could get a couple hours sleep. Renee nervously tidied up the house until two in the morning and then called the nursing station to assure he was ok-- then, finally she went to sleep.

Other than determining that today I would park the scooter closer to the front door of the hospital, it was also clear that the action part of faith still needs some work. While we have been praying with faith for God to do what only he can, we understand that we also need the faith to do what we can. Actively striving is a big part and is evidence of our faith knowing our efforts alone can never be enough but trusting that God will make up the vast difference.

We are looking at little Parker right now and he looks, quite honestly, a bit scared. We feel reassured that over the past week his spirit has been kept and protected close to God while his body fought through the major battles of this illness. At some point God allowed him to come back-- knowing full well that pain and suffering sometimes will be part of mortality and that this was likely to be an acute part of Parkers mortality in the immediate future. The faith that brought him back to us also brought him back to those mortal challenges we all face. As he and we endure those challenges then come the blessings and the joy of our existence.

Sometimes that 50 steps out the hospital door at 11 o'clock at night is the most we can give. If it truly is the most we can give-- it is always sufficient.