There was an old lady that swallowed a fly

Sep13

Faith loved books, stories & songs. She especially liked books she got at the school library each week. Since we only had them for the week we read them as often as

possible before they needed to return. A “habit” I instilled in all the children was Daddy time before bed. Faith commanded it with “cuddle me” a request hard to resist, we would both lay in her bed until one of us (usually her first, ahem) fell asleep. After reading the story of the “Old Lady who swallowed a fly” about 50 times and her insistence on re-borrowing the book each week I needed help. According to “Blue’s Clues”, an educational authority in any Dad’s book, an auditory, visual and kinesthetic approach to learning is best. So I did what any Dad would do, I turned to youtube. We watched the video over and over on my phone until she fell asleep. It was always fun and prompted her singing and speaking more and more as her speech emerged. It was always a pleasure to hear her voice and her unique pronunciation of words. One of the funniest and typical Faith was when she learned the word ICE. Every time we were in the grocery store and she saw the big ice chest with bags of ice she would loudly come out with ASS, close phonetically, the looks were priceless.So either I’ve lost my mind or I have a purpose for referring back to the story of a lady who swallowed a fly. I think it is the perfect example of the progressive absurdity of a situation and the feelings we all had as Faith’s journey began on March 7th and the wild turns and complications that ensued.

On August 28th, we sat down with Faith’s primary pediatrician (the one who was there in delivery to bring her into this world) and Dr. Steven Kernie, the infamou

s Dr. K who is the PICU director at the Children’s Hospital of NY. The purpose of our meeting was to review the autopsy of Faith. We had waited three long months to get the answer to the question “Why did Faith die?”.

The report is very thorough, some 8 pages long, and has many more clinical details than a parent should know about their deceased child but we needed to know. The conclusion “cause of demise is cardiorespiratory failure in a setting of persistent pulmonary thromboembolic disease, pneumonia, and probable sepsis.”. More

simply stated, her heart and lungs could no longer function due to the significant number of clots throughout her lungs, complicated by pneumonia and massive systemic infection. It was all simply too much for her to handle.

The report of course does not tell us what the genesis event was that kicked off all of these clots forming. It is speculation that she may have had them those days before her first blue episode. The question has also been raised recently by Sue’s oncologist, who is also a hematologist, why pulmonary embolism wasn’t suspected right away the first time she was admitted to the emergency room before surgery.

Are we satisfied? NO! Do we think there was mismanagement of her case at many points? I think the blog reflects that many times. YES! At one point I even brought up the point with Sue that I thought that even with our strong push to get her the care and attention she required it sometime fell on unsympathetic ears. My feelings were it was because of the fact that she had Down’s Syndrome and quite frankly some people in the medical practice don’t consider “them” to be a life as worthy of preserving. I know it sounds harsh but here is reality 92% of mothers who receive a pre-natal diagnosis of Down’s Syndrome decide to abort their babies. Juries award parents “Wrongful Life” verdicts for children born with DS. There is a silent genocide of these beautiful people. I have received may stares while with Faith out it public, I understand that about as much as I understand people backing up traffic for miles to rubberneck an auto accident. I have never had anyone come up to me and tell me I was selfish for giving Faith the chance at life. I did meet many medical professionals in the hospital who just presumed that she was a very medically complicated child with lots of adaptions, special feeds, braces or adaptive equipment just to deal to daily living. None of that was true. Her pediatrician commented that she was the most healthy child with DS that their practice has ever had, they have seen heart disorders, metabolic issues and even cases of leukemia that DS is more prone to. Sue disagrees with me but a while ago when reviewing care with a very good and smart friend he stopped me and asked “Do you think she is getting a lower level of care because of Down’s Syndrome”. His wife thought he was nuts, but it is something he came about based on the facts I presented without any mention of it by me. He is one who deals in facts quite a bit as he is a lawyer.

Even though both of our wives are typically right, I still cannot dismiss those feelings.

For those of you not bold enough to ask, yes we have established a relationship with a lawyer. There will be a full medical record review. Will it change the outcome for Faith, NO. Might it help another child in a similar situation? If only one, it will be worth all the time, effort, cost and reopening of wounds.

There was a young child who swallowed a horse, she died of course.

Faith’s Mom Update

Sep12

After the shock of it all I have some more news and information to report. Some of it is better, some not as good. To date Sue has had a Mammogram, Ultrasound & Biopsy of the tumor and a local lymph node.

The biopsy results are as follows:

  • Tumor type: Invasive ductal carcinoma
  • Histologic grade: Grade 3
  • Tumor Prognostic Profile: Triple Negative; Ki-67: Unfavorable; 75.37%
  • Lymph node: NEGATIVE (Negatives are not 100% until the lymph node itself is removed and pathology is completed).

Clinical staging is now: IIB, The original staging was III because of the tumor size of 6cm, since there seems to be no lymph node involvement it’s been revised to IIB.

The other biopsy facts indicate that this is a very aggressive and fast growing cancer and since it is a triple-negative (TNBC) it will only be susceptible to chemotherapy. The other modes of treating breast cancer such as hormone therapy would not be effective.

The recommended course of chemotherapy is three agents Adriamyin, Cytoxan & Taxotere (ACT) along with a bunch of meds for nausea, promotion of white cell production & steroids. A very powerful mix that is infused every three weeks for approximately 6 cycles (18 weeks).

The PET scan is on Thrusday (9/13/12) and will determine if the cancer has become metastatic (spread to other organs or tissues). Our hopes and prayers is that it has not. It will be difficult enough to fight in this one location.

The plan also remains to not perform surgery until after multiple cycles of chemotherapy. Multiple reasons exist. First they want to be able to physically see that the chemo is working on the tumor (the can measure growth and shrinkage) it will put things in a better position for eventual surgery and in TNBC it is the standard of care to have.

More good news to come after the PET scan on Thursday.

By the way I’m doing it again www.faithsmom.com will be Sue’s blog to follow our battle with this breast cancer and for updates along the way. It’s going to be from a husbands & caregivers perspective. As a man we are driven to fix a problem when we see it. Once again I’m in the position where I cannot fix it but must contribute what I can to make it better and hopefully help someone else out there going through the same thing. Since I will be the source of information, as Sue may not feel like discussing this as her treatment progresses, I like this medium to communicate all the facts at once with the largest audience possible.

If it wasn’t for bad luck, I wouldn’t have no luck at all

Sep5

Hello all again, my “vacation” is officially over.  I had hoped to give you all a status update on the family and what we have been up to.  I also have some more anecdotes and cute stories about Faith and some more medical information about her.

Another mater has surfaced that takes priority that I felt you should all know about and that will significantly affect our family again.

Our family learned today that my wife Susan has breast cancer.  The preliminary staging before biopsy and PET scan is stage 3. The plan is to complete some diagnostic testing in the following weeks and begin the first cycle of many of chemotherapy, to be followed by surgery in about 6 months.

We will know the prognosis better after the tests and her response to chemotherapy.  Without doubt the following months and school year will be very challenging for my wife and our family.

Thank you all for your past and future prayers for our family again as we begin another journey & battle with illness. I know our angel Faith will be keeping Mommy as safe as she can.

Peekaboo ICU

Jun27
  • 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

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.