• Keep an eye out for this week’s Advertiser News if you live in Sussex County, there will be a story about Faith and the wonderful people at her school. I will post a scan of it here when I get to see it.
• Pictures from birth on are being added to the photo gallery – 2003-2005 are up there now.

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My intention for this entry was to write it about 6 weeks ago. We had very few visitors to the ICU, we didn’t want many. Those who did visit sometimes found it overwhelming and for us visitors were always tiring. I know I posted some status pictures of Faith but no one except those who visited ever got to see the whole picture of our lives for almost 3 months. I had taken some pictures of the room and equipment (before being told I could not take pictures of the equipment…ooops sorry) and wanted to give everyone a virtual tour of an ICU room and fill in some details about life (and death) in the ICU.

The name of the article comes from Jessica, one day she was visiting Faith whose was sedated at the time was the victim of one of her games. She came out with “Peekaboo I see you” and we immediately saw the pun.

So first a quick tour of Faith’s room

 

I’m not sure if I’m writing this article to inform you as originally intended or to release the thoughts from my mind. You see, the new paradigm for PICU patient care is to involve parents intimately in the process. When Jonathan was in the PICU, 16 years before Faith, the rules were quite different. Parents were not allowed in the PICU 24/7, we had to leave a different parts of the day like rounds, shift change and when there were procedures (sterile mostly) occurring in the PICU. The biggest change was there was never any thought of letting the parent sleep bedside and basically live alongside their child during the stay. In some ways I think the old way was better for the parent, I know it was not better for the child though. We saw so many people throughout Faith’s stay that we were the only true historians that had a full history of her tests, outcomes, treatments and behaviors. You would think that the medical chart would be the “bible” of care for the patient, only if it was read and updated as carefully as it could be. We noticed many errors and omissions even from one day to another because of the mix of people and the dynamic nature of care. The downside for the parent is that we get to see EVERYTHING, and even participate in care. Some of these memories are good and are of the daily care you would expect to give your sick child along with support for them and the sense of security only a parent can give to a sick and scared child. The other memories I can best relate to what I imagine combat to be like, hours on end of boredom with minutes of absolute terror interlaced. In my case the most troubling memories that do not seem to fade with time are those times of terror, from simple procedures she did not want to participate in, to seeing your child resuscitated from septic shock and cardiac arrest. A lifetime of remembering the good times we had with her and those special moments that we miss so much is so much more palatable to those of her struggles or the drastic measures that were taken to save her life.

If we have been asked once, we have been asked 100 times “How did you survive so long in the hospital”. There is no trick, we are not super-humans, it basic biology. If you stay in the hospital for 1 or 2 nights, you come home exhausted. Some very basic things here, first you were not in the ICU with a critically ill child, next your “normal” was disrupted and not rewritten. When you get admitted into a PICU/ICU you know your child is there because they are very sick, the whole “critical” part of ICU kicks your body into high gear. Lot’s of adrenaline and endorphins are generated as you think your child is here because they may die. It’s the same biological response that gives people super-human strength to move things they thought they could not and to endure pain they otherwise couldn’t. By the time all of that wears off and the associated sleep deprivation almost a week has passed and your “normal” is the PICU. You live day-to-day with two events that mark the passage of time, shift change, your day nurse and your evening nurse. Time and weather pass outside unnoticed some days, you sleep when sleep comes as the day/night cycle only are suggestive of sleep, how your child night goes determines your sleep along with the nurse chosen to care for your child (see my nursing scale).

OK before I go all dark, here are some guidelines if you should every find yourself in a PICU with your child, a public service of sorts on my part.

• Superstitions – are held in high regard in a PICU. There is so little they can control, they control what they can.
  • Remember those pink/blue baby blankets from when your child was born. They are used in a PICU under your child to help move them around etc. The lines on the blanket are to always be parallel to the bed. The most honest answer why I ever got was as a nurse they can control everything outside those lines, IV lines, medications, O2 etc. The only thing that they can’t control is the outcome of that child in between the lines lying on the bed. (See the picture of Woody and notice the lines in the upper left corner).
  • Do not use the words Quiet or Good. If you mention it’s quiet it will soon change, if you say it’s going to be a good day or night it won’t be.
• Celebrate the small gains. We PICU parents are like those crazy sports parents, you know who they are. They celebrate the wins and trophy’s. We celebrate each baby step back to health with the same enthusiasm.
• You don’t want your child to be titled “the sickest kid in the hospital”, we have been there once and possibly twice. Yes it gets you lots of attention from everyone, but I’d rather be ignored and be calling for attention then needing it. Less is definitely more in this circumstance.
• Don’t sweat the alarms from all the technology surrounding your child. The medication pumps are annoying with each of their calls for help but are almost never dangerous. The vital signs monitor will drive you crazy if you sit and watch the numbers. The numbers are only your child for a moment in time. You would never judge their photogenic qualities by one picture, don’t judge their health by one number at a point in time. The folks who make those vital signs monitor do a very good job in providing alarms for when things go wrong. If anyone reading this works for GE, I’d like to say you made a very good choice in the “foghorn” alarm sound. If I never hear it again in my life, I will have heard it too much. It gives three types of alarms INFO (1 beep) WARNING (2 beeps) and CRITICAL (3 beeps aka “A Triple”). The triple is the kind of critical alarm you don’t want to hear, things like no breath detected (APNEA) or bradycardia (low heart rate) will trigger a triple. They get all the nurse’s and parent’s in the areas attention. The first thing you do as a parent is check your child’s monitor, the next if it wasn’t for your child is to say a quick prayer for the child/parent it is for and hope it’s a false alarm. Alarms for vital signs fail-safe and trigger a false positive rather than no alarm at all.
• Feel free to use my nurse rating chart below, demand a 3 and never accept a 1.

1. Nodoz nurse. Never sleep while your child is in their care.
2. Nokill nurse. Reasonably sure she wont kill your kid during their shift.
3. No prisoners nurse. The nurse who will treat your child like their own. Watch out if anyone gets in their way.

• Finally cherish the waking moments with your child. Make some good memories, you never know they may be your last.