Archive | June 2012

Peekaboo ICU

  • 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.

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

This was our wonderful view of NYC. They are constructing yet another hospital building.

Faith tried her best to avoid photos but I was able to catch her peeking.

This is her room from Faith’s vantage point.

Let’s not forget the most important piece of equipment in the room. The TV

Faith and all her accessories

This is the view when you walk into Faith’s room.

This is Sue sitting on the expanded “bed” it’s a chair that converts into a flat sleeping surface.

This piece of equipment can both cool and warm a patient by circulating water through a special blanket. You set the desired patient temp and it attempts to do the rest.

This is the gas that helped keep Faith’s blood vessels in her lungs expanded. Not the good stuff you get at the dentist (N2O). Would have been nice to fill the room with some of that at times.

The machine that ran 24/7 to provide and monitor every breath in and out of Faith for those 40+ days.

Dialysis machine that Faith was on for the final week.

In her final weeks of life her room became so full of equipment and nurses our view changed to this. I named it Faith’s garage sale as all her belongings and equipment were flowing out of the room and into the hallway.


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.

Faith the Caterpillar

First let’s get some updates and thank you’s out of the way:

  • On the right you will see a new link under “Blogroll” it’s called Bringing Juliette Home and it’s a link to another family with one child with Downs Syndrome (DS) who is looking to adopt another through Reece’s Rainbow. I learned of them through my sister JoAnne who made a donation in Faith’s name to help them reach their goal of saving another angel.
  • A story came out on Tuesday about Faith in the NJ Herald. Thank you Eric for a wonderful story about Faith and our community and school. A PDF scan of the article is available NJ Herald Article.
  • Thank you to everyone who worked and participated in Wantage Day this year and the fundraisers you ran for our family. I again cannot tell you how much it means to us to know the impact Faith had on everyone and the effort you all have put out for us. A special thanks to Nanci Valente, the special ed director for Sussex-Wantage Schools, who sat as the target of the dunk tank for hours causing long lines for a chance to dunk her.
  • On the day of Faith’s death I rolled my ankle during an advised walk outside on “such a beautiful day”. Has not been getting better, just found out from orthopedist that it’s a grade 2 sprain that I should have been on crutches for. Amazing pain killer that adrenaline and shock.

I do really enjoy writing these blogs, I so hate sitting down to write them. It’s my quiet time of the day usually when everyone else is asleep and I have some time to spend alone with Faith. That’s what makes it the hardest, I know it’s going to be close time with Faith which is both painful and comforting.

The day before Faith died was her friend Casey’s birthday, you may remember the card we received from her along with her birthday wish. Casey said she wanted no presents for this birthday (her 9th), her only wish was to have Faith get well as her gift. I had received the card and posted it proudly on Faith’s door for all to see. It was a terrible week, it had started with Faith’s first cardiac arrest and we were very worried as she had also started dialysis that week. Seeing that card and knowing what a wonderful gift Casey had wished for Faith not only renewed my hope but my faith in all things good.

I don’t remember why but I think it was my turn to stay the night but Sue decided to stay instead, probably because Nina was lonely and looking forward to a drinking buddy. I took the girls home with me, they were out earlier in the day shopping with Mom. Our first stop was to WalMart to print out a picture of Faith & Casey from Faith’s 8th birthday party. Earlier in the day Sue and the girls had picked out a special picture frame for it that said “Friendship grows with Love”, this would hold the picture of Faith & Casey. Our next stop was the Dollar Store in Franklin, NJ. I bought two balloons, one said “Happy Birthday” the other “You’re So Special”. Upon returning to the car I received the phone call from Sue that Faith was in cardiac arrest and I needed to return to the hospital, back to CHONY in a very fast and illegal way. The next day Faith died and the present remained in my car.

About a week passed and Casey’s Mom contacted me via e-mail, she knew I had the pictures from the birthday party and asked when I could to please send her them as she wanted to get a special frame for Casey so she could keep it in her room. I shared the story with her and asked if it were OK if the family stop by that day as we were going to be out to deliver Casey her belated birthday present. We arrived, gave Casey her present and talked a while with her and Mom. She also presented us with something she had made for us. It said “I Love Faith the Caterpillar”, I took it and thanked her but admittedly did not understand it. Another week had passed and we attended the memorial service they had at Faith’s school where butterflies were released. A day or so later I came across Casey’s gift again and thought to myself what is this with the caterpillar and the butterflies that keep showing up. To Google I went to find a book titled “Max the Happy Caterpillar” a book written to help children deal with death. A quick summary of the story is Max the happy caterpillar doesn’t die instead he turns into a happy butterfly. To this day I still don’t know if this book was ever used to help these children deal with Faith’s death. I do know that one little girl was able to say with one picture what we were all thinking and feeling. While we know that Faith is no longer suffering and is at peace, we would all rather have the Faith we know and love back just the way she was.

As any parent knows it’s a wonderful thing that children grow up in stages. It gives us a chance to learn and catch up with them. I think the hardest part about the death of a child is that natural order is disrupted so abruptly. From the time our children are only a promise of life until they are born we fall in love with them. We never fall out of love with them but the time they grow up we are able to distance ourselves from them to let them go on and live their lives. When that process is short circuited we never have the chance to build that distance, to separate through attrition. I often hear from parents of adult children about all their stuff that still litters the parent’s house. I cannot tell you how much an 8-year-old impacts a home. You cannot find one place in this house that Faith hasn’t touched or left her signature on. From her room, to her things left in every room. She was so woven into our lives it feels as if a part was just ripped out, with cruel reminders left scattered in our lives.

As I finally complete this blog entry a week after starting it, the clock reads 4 weeks since the caterpillar Faith transformed into the butterfly Faith. I to do miss that caterpillar but must be content she is happy as a butterfly.

The Dad Corner

We met three of Faith’s classmates at her wake. We wanted to make them comfortable so I remember getting down to their level and Sue asked them what their favorite memory of Faith was or what they liked most about her. All three in one way or another relayed two stories. The first was about Faith the super hero and the second was the Dad corner.

The first was Faith the super hero. Faith was infamously strong-willed and if could not get her way through sheer cuteness she would do so via pure resistance at times. A maneuver we would call the “drop and flop” was where she would drop to the ground legs straight ahead folded in half with hands forward. Can’t find a picture at the moment but imagine the most uncomfortable position for most of us or the shape of a hard taco. This was a very natural position for her and would often sleep in it. The other was plain old laying face down on the ground. I guess the kids saw the similarity to the “super hero” flying position and Faith’s attempt to resistance. In her case at least with me, resistance was not futile.

The second story was the “Dad Corner”. The kids told us that at the end of recess that Faith would run to a corner of the playground and say something like “No, Daddy”. Hence it was given the name the Dad corner by her classmates. When we spoke to her teachers they had no idea about the name but gave us the story behind that particular corner. Faith loved to play outside on the playground. She also didn’t like it to end. She started the habit of running to the farthest corner of the playground at the end or just before the end of recess so she could extend her time outside to the most. Never underestimate a person’s ability based on a diagnosis. She was a very resourceful and creative little girl who knew what she wanted and how to get it.

The Dad Corner

Today was a memorial service at her school. Our family was there with her school family and all the students in the school out on that playground. They planted and dedicated a tree to Faith along with a beautiful bench on a foundation of pavers all donated by a family business that has always been very active and supportive in our community. The tree is a crab apple tree, chosen for a few reasons. One is that it blooms with beautiful flowers from April-May a time we can all celebrate it’s renewed life as we do Faith’s during that time. The second was Faith would always walk with her physical therapist and tell her she wanted to go outside to the apple tree. There never WAS an apple tree on the school campus but Faith insisted their was.

After the ceremony outside we returned to her classroom where we had a tea party.  Faith would always love to have a tea party with whoever she could at home or just her dolls.  “Tea” was usually water from the refrigerator door, so after recess when the other kids had cups of water she insisted it was tea party time.  They dressed one of the tables with a table-cloth, beautiful china that even had butterflies on it and three of Faith’s favorite “healthy snacks”, Chips (from the yellow bag of course), Oreos (centers only for Faith) and Vienna fingers.  It was a proper & touching ending for a very memorable morning.

Well Faithie as usual you were right there is an apple tree and I’m sure now and then there will be a Dad sitting on that bench under it seeing you there for a long time to come.

Video of memorial ceremony today


Days of Infamy

First, if you have received the e-mail about this post and or are reading it online I’ve done everything right and moved the blog to the new host. It will be much faster, reliable and expandable to do more things.

I will continue to post every few days or as the spirit moves me. I’ve been extremely busy with the move of the website and been feeling extremely cruddy because of a sinus infection that just amplifies my normal daily yucky feeling. So much to do and so little energy.

The first new part of the blog is the Photo Gallery (it’s link is above in the menu bar). I will start loading some more of the photo’s and videos I’ve received over the past weeks into it. There is a lot of work in pixelating photos that have people not in my family and it’s harder than I thought looking through all of those photos.

I have also published about 15 missing entries that were on Facebook but not the blog that chronicled Faith’s days in the hospital. You may have noticed the gap back there between March and April.

I’m also looking at a way of creating a permanent “mirror” of the Facebook group that started all this so it can be viewed by non Facebook members etc. I need to resolve some technical issues and also de-identify all of the entries made by FB friends so as to not betray their privacy.

The “theme” for this site is called Bouquet, I think it’s more “pretty” and fit’s Faith’s personality better. Ironically I picked it for the colors and layout and then noticed that the banner above had three options for the flower types Tiger Lily, Forget-Me-Not and Pink Dogwood (the default). Ironically in a few days a pink dogwood will be planted in front of our home. It was a remembrance gift from Faith’s Aunt & Cousins in California.

Back to the title of the blog “Days of Infamy”. There have been many in our lives starting with our wedding December 7, 1991. Yes the 50th anniversary of the original “Day of Infamy”, we didn’t plan it that way just happened. Our wedding was anything but infamous, it was a very good day and all went very well, you see the pun though.

As I was getting ready to move the blog over tonight/this morning I was updating some of the old blog entries that had not yet been published and noticed the date June 7, 2012 some significant world events happened on this day in the past. Our most significant was when our first-born child, Jonathan, who at 10 months of age had his first heart surgery on June 7, 1995. That day started out with the normal anxiety any parent would feel having to place their young child into the care of a surgeon who was about to open them up and repair a broken heart. Later in the day many hours after the surgery should have been completed a team of doctors brought us into the infamous “Green Room” at what was then Columbia Presbyterian Medical Center Babies & Children’s Hospital now known as CHONY. They informed us that although the surgery went very well and Dr. Q. was able to perform the fixes he needed to there was a problem. For any open heart procedure you need to be placed on bypass, a machine that will take over for your heart. They cannot obviously work on a heart that is both beating and circulating blood at the same time its doing it’s job. The problem they told us was that when they were trying to remove Jonathan from bypass he would immediately go into heart failure. It was not that his heart was not beating but rather when it became time for it to perform the job of pumping blood on its own it could not and they did not know why. We were then told that he had at best a 25% chance of surviving.

We had the choice of two hospitals in NYC that could have performed the surgery back in 1995, one was Cornell Medical Center and the other Columbia. We chose Columbia because of the relationship we had with Jon’s cardiologist even though we had strong reservations, Sue had previously worked on their cardiac floor with mixed experiences. We were led to Columbia though and that was our final decision. The team offered us a short-term fix to get Jonathan through the next few days, it was called ECMO, another kind of bypass originally used in neonates but something they were willing to try. Columbia had two ECMO machines, Cornell had none. One small problem, both ECMO machines were currently in use. The solution was to piece together a third and enlist many perfusionists (the folks who run bypass machines) to sign up for overtime to work the machine 24 hours a day. They now have a whole team dedicated to ECMO with 15 machines available and many times in use at CHONY. We were told that this was a temporary fix and if they could not fix the underlying problem in 7 days they would not be able to continue and he would die. It wasn’t because of staffing or cost but simply because the data at the time showed that any time past 7 days on ECMO significantly reduced the probability of “positive patient outcome”. The next week is fondly remembered as “hell week” with so many ups and downs. It finally ended with what we sometimes call Jon’s re-birth date of June 14, 1995, the day he was able to come off of ECMO and his chances for survival were greatly improved. He had the title of “sickest child in the hospital” for too long and we were more than happy to give that title back. Sixty (60) odd days later we were done with hospitalizations, surgeries, etc and back home with our child. If you have ever heard us refer to Faith as the “easy one” this is why. Although she was born with Down’s Syndrome she had absolutely no heart defects so we thought our life with her was going to be a walk in the park compared.

Ever since the events of “hell week” Sue and I both either consciously or sub-consciously become anxious on the subsequent anniversaries of those dates. For many years we would ensure that we were away from home on some time of mini vacation (before the kids were in school) to make sure we were distracted. It’s only been 17 days since Faith passed and now another anniversary. I don’t know if her’s will eventually overshadow the events in Jon’s early life. I can only hope. I don’t look forward to “Hell Month” (May 20 – June 14). Only time will tell.

To better days…