Tuesday, June 28, 2011

Day Six

When I thought about the days that would be the longest, I always assumed that day would be yesterday, waiting on James to get out of his surgery and to know the results one way or the other. In a strange way though, today felt longer. Maybe because some of the adrenaline is beginning to fade and Kara and I are starting to remember that we're mortal. Maybe because we just didn't do much, and so the day crept by in anticipation of action- relatively minor actions- that just took much longer than we thought they would. We thought we'd make it back to the floor by midday, we didn't make it until 7:00.

Last night Kara got quite sick in the evening (food poisoning+ no sleep= violently ill) so I stayed up at the hospital alone with James. I'm glad she rested. In many ways, the evening routine in the PICU has become normal, expected even. Every now and then one of James' levels will spike. It's almost always nothing. After a few days I now know how to silence every alarm, though I'm still working on how to work the IV machine alarms. The silencer only buys you 2 minutes (the ones on the floor, where you can completely mute the alarms are SO MUCH better), so it's worthwhile to find a nurse in the meantime if it's serious. James came through the operation well and was on pain meds, so he woke up only briefly, once at my prompting, to eat some pedialyte which was the only thing he could have because he would be under general anesthesia later that day.

The morning routine starts somewhere between 6:00-7:00. The doctors begin to creep in to make their rounds, and the day nurses arrive along with the changing of the guard. We've become much more adept at medical lingo than we were before- "the floor" for non ICU. The "magnet" for an MRI machine. An "admit" your nurse is getting another patient and will be busy. "Give report" what they do on shift changes.

Our neurosurgeon arrived with his "groupies" as we call them, the assembly of some combination of PAs, residents, and fellows that follows behind him like a dutiful tail wherever he goes, rarely speaking and saving their questions for the walk between patient rooms. I'm glad their are so many of them. It means a doctor is never too far away.

Kara arrived back with a nice, huge, cup of coffee- (a Kara creation, venti mocha cocunut latte) and we started our day. Despite initially being scheduled for an MRI at 9, other emergencies meant that the MRI was postponed until 1:30. Although the wait did eat up a good chunk of our day, we were grateful that we were now capable of being bumped- we'd exited the critical stage in which James' condition required that he be given first priority. Similarly, for whatever reason our room at the PICU was a "special" room with positive pressure that was needed to treat another patient, so we had to move to another PICU room. As no less than three people came in to apologize for this, I got the distinct impression I was supposed to be mad about it. I was just glad we didn't need a special room. I like not being a first priority at the hospital.

That said, I can understand why some people would get mad frequently in situations like this. Yesterday when James was having his surgery I went up to the surgical waiting room to check (for the third time) if they had our contact information correct- all 4 possible numbers in descending order of priority. A man there was complaining to the staff that his entire family couldn't stay in that waiting area. The staff apologized and he demanded to speak to a "manager." While I thought that was a bad approach all things considered- a waiting room is not a restaurant- I understood where he was coming from. There's no control when your child's in the OR or that sick. But you can control where you sit and who you sit with- or at least you'd like to. There are a lot of things I could get mad about. But I choose not to. My anger will not help my son unless I'm angry for him, not for me. In any event, in my experience the staff has been fantastic- little things, like taking a lock of James' hair during the surgery and giving it to us as his first "hair cut" (he's actually already had one) go a long way.

The new PICU room had a gorgeous view of downtown Dallas, far and away the best view we've had so far. I know it's silly to keep track, but it's something to pass the time. The wait for James' MRI kept getting longer- building anticipation. Though we knew the surgery went well there's that nagging need for closure- we wanted to remove the possibility of any more immediate surgeries from our future as soon as possible.

Finally, we received the go ahead for the MRI and met our fourth anesthesiologist so far. It seems strange that a procedure which shook us a few days ago- we were terrified of James going under anesthesia for the first time, now seems tame, almost routine. I don't know that we're used to it or that we ever will be, but we're certainly starting to appreciate relative scale of each procedure, and adjust our concern level accordingly. Ironically, I recall that there was a real question back in April about whether the "risk" of the CT scan were worthwhile given his fall. We're well past worrying about the risk of CT scans- and as Kara said, it's a real blessing that we got that scan so that our doctors now have a baseline to compare James' scan from last week to.

After the MRI we returned to the PICU and waited our the results so that we could receive the orders to move down to the floor. This wait was hardest, though again, the fact that there didn't appear to be a need for him to speak with us immediately can only be perceived as a positive- if he had things more important to do, that meant our son wasn't having another surgery today to remove missed tumor. I finally got bored enough to turn on the TV in the room. Strangely, even though we've had a TV in every room we've been in I'd never turned one on. In a weird way, there had just never been enough down time. We had the chance to meet one of our nurses from a few nights before again. She told us about a camp she ran for children like James who had brain tumors- 220 kids every summer, many of them who had their tumors as young as James and couldn't remember a thing. It was great to hear about so many success stories, all of these little messages lift our spirits and to envision a normal, happy, and of course healthy future for James. This nurse was kind enough to page our surgeon for us, who gave us the results which Kara already described below in some detail. To summarize, good news. The tumor is 95% gone (no one ever expected them to get all of it and we knew they wouldn't) there will hopefully not be a need for more surgery.

Following the results we were fortunately able to quickly move back to the floor and get settled in there, where Kara demanded that I go home for the evening. It was difficult to leave, to let go of the illusion that James somehow needed me there to take care of him. But Kara, as she often is, is right. James needs us rested to take care of him, we're useless to him exhausted and falling asleep in rocking chairs as I did earlier today. So now I'm home and Kara's spending the night with James. I took my first shower out of the hospital since Wednesday morning. I laid in a bed larger than my college dorm bed. I got in bed at 9:00, but was still too keyed up to sleep although I'm exhausted so I wrote this post in bits and pieces.

I cannot thank all of you enough for your thoughts and prayers for James, Kara, and our family. Your support has been overwhelming in just the right way- I am amazed by how many different people from all stages and parts of our life have reached out to us in this time and helped us. We could not function without your support.

Here is a picture of James from about a month ago- he is playing and happy. He likes to throw the parts of this toy when he tires of eating them. I pray that soon we will take many more pictures just like this, normal in every way.


  1. Sweet Jamesie, keep up the great work! You are doing such an amazing job of getting better.
    Your parents are doing awesome too! Staying strong is one of the hardest jobs ever.
    Sooner than you think you will be home, out of the bubble that is Children's Hospital. You will worry because Jamesie is playing and might get hurt. Then you realize that he just had Brain Surgery and that he can do whatever he wants!
    You are going to be shocked at how quickly things return to "normal" when you get home. We still visit Children's quite frequently to meet with our neurosurgeon. We also have MRI's every few months. We joke that our 5 year old can read them herself by now! Pretty soon we may graduate to the neuro-oncology clinic at Children's, we hope and pray that your journey is as uneventful as ours has been.
    I know that our children had two very different tumors, but your story sounds so very much like my life 2 months ago.
    Sending lots of prayers and positive thoughts,
    Bobbie Daily

  2. Aubrey: Thank. He did a great job, more than we could have asked for. I am glad to hear yours is doing well. I'm always glad to hear about other children who did well, it reminds me that one day there might be more hope for kids like James.