Always listen to your "gut"

Took Mary to the ENT today -- her nose is fine. Took Jack to the ENT today because he has been draining puss from his ears since Thanksgiving and has been on three courses of antibiotics to no avail. Miraculously, his ears cleared right up a few days before our appointment. I knew I was wasting my time taking both Mary and Jack to the ENT today, but did I listen to my "gut"? Nope! So, I have no one but myself to blame for spending 2 hours sitting in the ENT's office and 2 hours spent in bumper-to-bumper traffic. Nothing irritates me more than wasting time and today was a collosal waste of time. As you can imagine, I'm quite irritated right now!

Hope your day was more productive than mine.

yea, I know ... I'm supposed to be enjoying the view. I'm trying ...

Family Photo

Here is the family photo that was so important for Jack to be out of his brace and in his wheelchair for. Each individual family picked a color, so you should be able to tell who belongs to who.

On the Jack front ... he's not been feeling so good this weekend. His sats are okay, just a high heart rate and looking pretty miserable. Mary is battling the flu (again), so it's possible that is what Jack has. I had to go into the office for a few hours this morning and when I got home the ambu-bag was sitting on Jack's bed. It's been a long time since we've had to use an ambu-bag -- not sure why it was out since his sats are fine (Kristi was gone by the time I got home, so I didn't get a full update). I just hope that whatever is going on, it doesn't settle in his chest. I'm not ready to head down that road (as if I'm ever ready!)

Busy Week

Sometimes I forget I have a couple of other kids who also need my time and attention on occasion. This week was a nice reminder.

I got a call yesterday morning from the nurse at Mary's school telling me that Mary was hit in the face with a basketball at close range. She tells me Mary's nose is very swollen and deviated to the left. I cancel my appointments for the day, call my sister - who says she'll go pick up Mary because she is closer to school - and I race out of the office to meet them at my sister's house. Based on the school nurse's description, I walk in expecting to find Mary an absolute mess and with her nose on the side of her face. Uh, not even close. In fact, I can't even see any swelling (although Mary insists it's swollen) and I'm not seeing any deviation. So as not to be nominated for the "Heartless Mother of the Year" award, I decide I'll at least take her to Urgent Care. We get there and I'm told that they don't do x-rays of the face. What, their machines don't work on faces? I look at Mary and ponder the question .... go to the ER or go to lunch? We chose lunch! Mary and I had a nice lunch together, I dropped her off at home and then headed back to office. Mark thinks Mary's nose has "shifted". I'm still not seeing it. But, I went ahead and made her an appointment with the ENT next week. Jack already has an appointment, so she'll be coming along. The picture of Mary is taken at lunch yesterday (with my phone - no, I don't carry a camera with me everywhere I go :-) I think her nose looks fine, what about you?

Today I took Hilary to the audiologist because she hasn't had her cochlear implant checked in years. Poor Hilary, her needs completely took a back seat after Jack was born. When we lived in St. Louis it wasn't as big a problem because her school handled all her hearing issues. Since we moved home, she's been totally neglected. We've noticed that her speech has really become unintelligible, so it was time to get her in for an evaluation. The audiologist changed some of her settings (the technical term is "mapping" her implant) and tested her receptive language by covering her (the audiologist's) mouth and saying sentences that Hilary was asked to repeat. Hilary started crying because she was upset that she couldn't understand some of the sentences. Sometimes I think Hilary forgets she is deaf because she manages so well with her implant. Nothing like watching your overly emotional teenager have a meltdown in the audiologist's office. After we left the office, Hilary told me she hoped being emotional wasn't hereditary because she didn't want a kid who acted like that. All I could do was laugh and let her know that ALL teenage girls are emotional!

I emailed the St. Louis ortho with a few questions now that we are at the six month mark. I will only say that his response was true to form and he remains the most unlikeable physician I have ever dealt with since Jack was born. I am just glad to be done with him.

So that's my week in a nutshell. Not too exciting, but far from boring!

Life is boring, life is good

Not much going on at the Schrooten house, but I wanted to bump my whiney post about being tired, so I thought I'd share a few pictures and a video clip with you. The video is of Jack watching "Jack's Song". He really enjoys watching it. Notice the big smile on Jack's face when he hears Eric's name. Also notice Eric in the background walking out of the room after he hears his name - that's all he is interested in!

I took the video with my camera turned and I can't figure out how to turn the video upright. If anyone knows how to fix it, please let me know. (sorry, it's a bit annoying to have to watch it sideways ... but, if you have a laptop, you can always turn your computer on its side :-) Btw, Jack's shirt says "Move, you are blocking my greatness"

Mary had another Irish Dance competiton today and she did well. Eric insisted I take his picture since I was taking Mary's. I'm not sure where he thinks he is hitching a ride to.



************************
To answer Kristy's question .... I get Jack's shirts at Abercrombie (Kids) - they have great t-shirts, but I don't think they make toddler size clothes. He has another shirt from there that says "Entertain Me, I'm Bored".

Tired

I’m tired. I’m so tired it hurts. I’m so tired the phrase “I’m too young to feel this damn old” comes to mind. I can’t remember the last time I didn’t feel tired. It’s not that I don’t get to bed early enough to get a decent night sleep; I’m just not able to sleep through the night. Rarely does a night go by that I’m not up once or twice dealing with a Jack issue. It’s also impossible to achieve any level of deep sleep when you are listening to the rhythmic swooshing of the ventilator through the baby monitor planted next to your ear. I’m so in tune to Jack’s vent that I can tell if there is water in the circuits, if the air leak around his trach tube is too big or if he needs suctioning just based on the subtle changes to the sound of the vent. Shutting off the baby monitor is not an option since we don’t have night nursing and Jack has to be monitored 24/7. To use my friend Tess’ favorite phrase … “it just sucks!” The scary thing is that I now find myself struggling to keep my eyes open when I’m driving to and from work. Not good! I just don't know how to get un-tired.

On a positive note, at least I’m not a rat. An article written by the Neuroscience Institute found that while sleep deprivation in humans leads to cognitive impairments, if sustained for 2-3 weeks in rats, it is invariably fatal!

(Interjecting a little humor here ... that was supposed to make you laugh).

Jack is 10 days away from being 6 months post-op. I plan on contacting his St. Louis ortho to ask him what Jack is allowed to do now that we are at the magic 6 month mark. Hopefully, he won’t give me a list of restrictions that we’ve already violated. :-) Jack continues to do well. He is happy, he is healthy and he is lovin’ life (and HE is getting plenty of sleep!)

Jack's Song

In early December, Jack's OT had us fill out paperwork to send to an organization that writes songs for chronically and terminally ill children. They write a song just for your child based on information you give them. We received "Jack's Song" last week and I thought it would be fun to share it with you. But you know me, any opportunity I can get to share pictures of Jack ... I'll take it. So, I put together a video of pictures to accompany Jack's Song. If you can stand to watch another video of Jack, click on this link to "Jack's Song" and enjoy!

(p.s. the singer pronounces our name incorrectly, the "oo" in Schrooten is pronounced as a long "o")

The Willow Tree Foundation

Since life is relatively boring right now, I thought I’d share a little bit about The Willow Tree Foundation. Many of you who read this know about the foundation and some of you who read this have generously contributed to it. For many years I’ve been an active participant on a message board for parents of children with trachs - Aaron's Tracheostomy Page. Over the years, I’ve come to know and care deeply for the parents of kids like Jack – parents of children who are classified as “medically fragile”. The stories shared and the hardships faced by these parents really tugged at my heart and I felt like I needed to do something. I wanted to let these parents know that I recognize and understand what they are going through. I understand the enormous physical, emotional and financial stresses they face in caring for their children and I understand that some days it’s all they can do to get up and put one foot in front of the other. I wanted to show them that their efforts don’t go unnoticed and that they too are deserving of some time and attention. Certainly, as parents we will do whatever we have to for our children and we don’t expect to be “rewarded” for doing our jobs. However, parents caring for children with complex medical needs are so consumed and overwhelmed with their child’s care that there is little “me” time allowed. We all need “me” time to unwind and re-energize, yet parents of medically fragile children – those who perhaps need this time the most - are the least likely to take any time for themselves.

Personal experience told me that parents of medically fragile children need respite time. The research I conducted in connection with establishing the foundation supported this. Of all the facts my research revealed, one of the most profound facts I discovered (and can attest to) is that the recurring stresses associated with caring for a medically fragile child do not become less disruptive over time. In other words, we don’t get used to this. We learn to cope, but it doesn’t get easier with time. The research further indicated that “the relentless pressure may lead to decompensation”.

Knowing that the need was there and having found the research to support my mission, The Willow Tree Foundation came to be. Forming the corporation was relatively easy - getting tax-exempt status from the IRS was a bit more difficult. In August 2005, almost a year after the corporation was formed, I finally received tax-exempt status. The letter giving me tax-exempt status was my ticket to start soliciting money. We were able to raise enough money last year to award our first “wishes” to several parents here in the Phoenix area. I have received a very positive response from the trach-airway nurse at Phoenix Children’s Hospital – she has been our primary referral source to date. It is our hope to continue to raise money so that we can continue to fund respite opportunities. A significant amount of our seed money was raised through a matching program by my sister and her employer – American Express and for that, I am very grateful.

I have received interest from parents around the country who have offered their assistance in the event we expand the boundaries of the foundation and grant “wishes” to parents in other states. At this time, I am thinking about ways to accomplish this so that people who want to donate to the foundation but want the money to benefit the parents in their city or state can do so. Anyone who has an interest in being a representative for your state, please contact me and we’ll talk about how we can make it work. Email me at: willowtreefoundation@cox.net

I’m excited about what we have been able to accomplish this last year. My hope is that someday “The Willow Tree Foundation” will be a name familiar to medical professionals and parents caring for medically fragile children throughout the country and that our mission “to provide parents of medically fragile children with respite opportunities through activities that allow parents to take ‘time-out’ from the unrelenting demands associated with their child's care so that they can maintain their stamina and sense of perspective and continue to meet the intense medical needs of their child” will be carried out on a national basis.

It can’t hurt to dream, right?

If you haven’t already done so, you can read about the foundation at The Willow Tree Foundation (also found under the "Links" section)

New Year, New Look

Depending on your computer, with the new template - you might not be able to see the "Links/Previous Posts/Archives" -- if you scroll down you can see them. I noticed that I could see them on the screen on my home computer, but at work, I couldn't see them (they are at the bottom of the page). Just an fyi :-)

********************************************
I thought I'd change the template for Jack's Blog. I like the new look, hope you do too. I'm not sure if I should even keep "blogging" - as long as Jack continues to behave himself, it could get quite boring here and I'm certainly not looking for any excitement to report!

The kids start back to school tomorrow. I'm looking forward to getting them out of the house, but I'm not looking forward to the hour that is added to my morning commute when they are in school. We've been without a nurse for the last four days ... call us wimps, but Jack's care is non-stop and exhausting and we are so looking forward to Kristi's (Jack's nurse) return tomorrow.

Have a great week.

Reflections and Resolutions

Alas, the Schrooten B & B is officially closed. Well … technically, my house is a “B & Make Your Own B”. I provide the bed, you provide your own breakfast (lunch and dinner). Much thanks goes out to my sister and brother-in-law from NJ - they kept everyone well fed - which was no small feat considering that I not only lack cooking skills, I also lack cooking “equipment”. Oh well … they know cooking equipment, I know medical equipment. We all have our area of expertise.

As we leave 2006 behind us and start a new year, I realize after much reflection (and after d-r-a-g-g-i-n-g my butt up that mountain earlier this week) that it’s time to get back into shape – physically, emotionally and spiritually. Without a doubt, last year took a toll on me - it was one of the toughest years for me since Jack was born. It was a particularly difficult year for Jack – as he spent the first half of the year fighting one respiratory infection after the other, and you all know how he spent the second half of the year. As for me, all I managed to do last year was simply get through it, without any clear direction, purpose or plan. “Lost” best describes how I felt for the majority of 2006. In case you haven’t figured it out yet, I’m a planner. In fact, I practically had my whole life planned out the day I was born . . . just ask my mom. The downside of being a planner is that you tend to be inflexible and resistant to change and when the inevitable change occurs, it hits hard. In addition to the trauma of Jack’s surgery, there were a few other things in particular that made 2006 a “lost” year …

One of the most difficult changes was the dismantling of the team of doctors who have cared for Jack over the last 7+ years. The reason for making the 3000 mile trek between Phoenix and St. Louis is not because we enjoy the scenic drive so much, it’s because of the incredible team approach we’ve always experienced at St. Louis Children’s Hospital. The doctors at SLCH aren’t only about their “part” of Jack, they truly work together as a team – they coordinate care, they share information and they actually talk to each other about Jack. For the most part, Jack had a remarkable team of doctors caring for him in St. Louis. Sadly, our team is no more. The first to leave us was the “captain” of our team - Jack’s pulmonologist. Jack had the “best of the best” in Dr. Pam – an expert on kids and vents, a true advocate for her patients, a force to be reckoned with and someone who could make things happen. I’m still trying to figure out how we will manage without Dr. Pam (she’s in Florida … quite a ways to drive - not that I haven’t considered it!) We also saw the departure of Jack’s ENT, as well as our favorite Intensivist. I have become very attached to (and dependent on) a few of Jack’s doctors, including two of those who left last year. It’s been extremely difficult on a personal level knowing that they are no longer available to care for Jack. We’ve not only lost our team of docs, I’ve lost my security blanket. I always knew in the back of my mind that if I didn’t get the care I expect for Jack here, I could always load him in the car and drive East. I now find myself in the uncomfortable position of having to look to the doctors here to manage Jack’s care - something that hasn’t worked the last 4 years and isn’t likely to change in the future. I’ve already had a talk with Jack and told him that he is done with doctors and he just has to stay healthy. We’ll see if he listened!

The other difficult challenge of 2006 was trying to figure out what I’m supposed to be doing for Jack. The first few years of Jack’s life we had countless goals to work towards and the hope that he would achieve them. We kept busy trying to get past “this” so that we could move on with life as we wanted it to be. Getting off the vent, walking, talking, eating … all of the things that consumed our earlier years are but a distant dream. Then there was that whole anoxic event thing and working towards the recovery from that. Today … what is there to work towards? Jack doesn’t attend school and the services he receives at home are primarily entertainment. It’s not as if he will ever hand in homework, take a test, or graduate. The planner in me struggled to find some direction, goals, and purpose.

So, I begin the New Year still somewhat lost, but with the resolve to let go of the need to always have a plan … to allow myself to simply enjoy the journey and not worry about the destination. I resolve to live life, not merely exist. I resolve to look at the view. I needn’t look too far to find my role model. He is that wise soul who “gets it”, who lives in the moment and who is happy ... I need only look to Jack.

**********************************************

I close this post by sharing a portion of a video that we put together for the Tracheostomy.com Pediatric Conference held last summer in St. Louis. We can all learn a thing or two from these very special children - each one of whom started out life facing greater challenges than most of us will face in a lifetime.*



*If your child is in this video and you object to me sharing it on this forum, please notify me and I will remove the video. Thanks.

HAPPY NEW YEAR!

from the "Main Man"

A Day of Hiking

Waiting for the last straggler (who happens to be my brother and the guy with the camera)

The four of us "old folks" at the top

My niece Kelsey

My niece Amanda

My nephew Michael

Yesterday a group of us went hiking on a very popular valley trail - Squaw Peak (located right in the middle of Phoenix). It's a tough 1 mile hike to the top of the "mountain" - something I could do with relative ease a few years ago. It about killed me this time around! Today is our last day together, as everyone heads home tomorrow. It's been fun ... well, except for the flu part -- the flu count is now up to 10! (so far, Jack has avoided it).

Have a wonderful day.