Sunday, April 27, 2014

Ryan House Community Breakfast

To all of my local (Phoenix area) friends: Please consider coming to the Ryan House Community Breakfast on May 7th at the Arizona Biltmore. The breakfast is free and it's an opportunity to find out more about what Ryan House does and to hear Ryan House stories - including ours. I have been asked to speak at the breakfast - so, show up and support me! 

I promise to update the blog soon, but know that I am doing okay. I miss Jack every day and always, but find that the knock me to my knees pain of his absence isn't as intense as time goes on. We spent Easter weekend in Sedona, which is as close to heaven - and Jack, as you can get.  

beautiful Sedona

Hiking through Oak Creek Canyon - West Fork Trail

End of the trail - we built a Cairn for Jack

I also left two stones in the creek (the other side of the "Onward" stone says "Love Jack")

 Chapel of the Holy Cross

inside the Chapel


Sunday, April 13, 2014


I have returned from my week in St. Louis. I'm generally not a person who looks for or believes in signs from those who have gone before us. However, if I was such a person, I would have to say that there were many things I saw and experienced last week that had Jack written all over them. So, for the moment, I choose to believe that my beautiful boy was traveling alongside me, giving me signs and leaving me messages he surely knew I needed to receive.

It has been quite some time since I've attended a place of worship and while I have a strong faith, I don't have a strong attraction to buildings where people gather to worship. However, while in St. Louis, I took the opportunity to attend two different services, both of which seemed to speak to me. On Friday evening, I attended Shabbat service with our friends David and Amy. I loved everything about it - the music, the readings and the feeling of community. During the d'var Torah (sermon), the Rabbi shared a story of a family in the congregation who had recently lost their son to cancer and the message was about being there for others in their time of loss. Such an appropriate message as I sat between my two dear friends who have been there for us and supported us since the day Jack was born.

On Sunday, I spent the entire day with Jack's neurologist. When I asked her if she would have some time to see me during my visit, I didn't expect her to give me an entire day of her time. We started the day by attending Mass together at a beautiful old Catholic church on the campus of St. Louis University. The sermon that day was about friendship. The message wasn't lost on of either of us, as we both recognized the friendship we share. We spent the rest of the day together - talking, visiting the Missouri Botanical Gardens and raising our beer glasses in a toast to Jack at a local Irish pub. While we talked about many things, I did ask her to put on her physician hat at one point because there were two things I needed to know from her: (1) what she believed caused Jack to be in so much pain; and (2) why was Jack no longer able to be supported by the ventilator at the end. In her opinion, both came down to heart failure. What she explained to me made sense. (She is one of the top neurologists in the country, so I suppose she should make sense.) I needed to know and believe that there wasn't anything more I could have done for Jack - something I hadn't yet been able to find peace with. She gave me answers that I could accept.

During my week in St. Louis, I shared memories and tears with some of Jack's former nurses, both home health nurses and hospital nurses. I spent a couple of days with Peg, enjoyed time with my sweet friend Jenny, went on a couple of great hikes and was pampered by our friends, David and Amy. I'm so grateful for all the love and memories shared with "Jack's people".

The most emotional day for me was the day I spent on the St. Louis Children's Hospital campus. I started the day by meeting Jack's neurologist for an early lunch (apparently, she wasn't tired of me yet). As we were walking back from lunch, she pointed out a willow tree, not knowing its significance to me. I didn't recall seeing the willow tree during our last visit to Children's and I probably wouldn't have even noticed it if Jack's neurologist hadn't pointed it out to me.

After saying good-bye to Jack's neurologist, I went by the eye clinic and left an "Onward" stone for Jack's ophthalmologist and then to the ENT clinic where I gave an Onward stone to the trach nurse and also left one for Jack's ENT. I included a note with the stones so they would know the meaning behind  the "Onward" message. I walked around the hospital, as much as I could, and spent some time in the chapel where I had prayed so many unanswered prayers. I walked around the Washington University Medical School campus and went by the Central Institute for the Deaf - the place that brought us to St. Louis in the first place. So many memories as I was walking around. Thinking more about the significance of the willow tree on the campus of St. Louis Children's Hospital, I felt moved to bury an Onward stone at the base of the tree. What better way to push Onward than to leave all the burdens and painful memories with the willow tree. Ever Bending, Never Breaking. A sign from Jack? I'd like to believe so.

where I buried the stone

After I buried the stone, I stood by the tree and listened to a song on my playlist titled "Fly Away". The song is on an album of lullabies that I would listen to with Jack. When that song would come on, especially during Jack's final days, I would imagine Jack flying away to heaven - away from all the pain and hardships of his life. I stood by the tree and allowed the tears to fall.

I will be honest and tell you that after being back at St. Louis Children's and seeing so many children who are enduring many of the same challenges as my sweet Jack, I walked out of the doors for the last time knowing that I'm glad to be done with it all. I'm glad for Jack to be done with it all. No more medical people. No more x-rays, ct scans, echos, bronchs, anesthesia, surgeries, blood draws, IVs, wheelchairs, trachs and vents. No more trying to outrun a disease that was always going to win in the end. Yes, I would do it all over again and yes, I would continue to do it all if Jack was still here. Yes, I will always profoundly miss my beautiful son, but I don't wish him back here. He is free and that gives me peace.

Spending last week in St. Louis was very healing for me. The word that best describes how I feel after talking with Jack's neurologist and getting the answers to my questions, after being back at Children's Hospital, and after leaving it all at the base of the willow tree is "UNBURDENED". I feel like I was able to let go of so many emotions - not the least of which is guilt. I finally feel some peace for Jack and for me. I also feel like I'm going to be okay.  

I've heard people say that a cardinal represents a loved one who has died. The picture at the top of this post was taken while walking through the Missouri Botanical Gardens with Jack's neurologist. A sign from Jack? I'd like to believe so.


hiking along the bluffs overlooking the Meramec

St. Louis Children's 


Central Institute for the Deaf - old entrance

new entrance

hike with Jenny

Thursday, April 03, 2014

Jack’s Journey – The Early Years Part II

As I sit here, the night before I leave to spend a week in St. Louis – the City where Jack’s journey began, I think of where we were fifteen years ago at this same time.  Jack was in the Pediatric Intensive Care Unit at St. Louis Children’s Hospital (SLCH) recovering from surgery three days prior to plicate his right diaphragm in an attempt to resolve the persistent collapse of his right lung that was thought to be the cause of his inability to successfully wean from the hospital ventilator.

Thinking of those early memories and realizing that I only started blogging in 2006, when Jack was 8 years old, I decided that I need to go back in time and document the first eight years of Jack’s life as best as I can remember, before I forget it all.  I titled this entry Part II because it details Jack’s admission to the Pediatric Intensive Care Unit at St. Louis Children’s Hospital in January of 1999. I’m starting with Jack’s time in the PICU at St. Louis Children’s because that’s where my memories are right now as I anticipate my upcoming visit to St. Louis.  I’ll write Part I at a later time.


Jack was discharged from the Special Care Nursery at Missouri Baptist Medical Center on December 22, 1998, a little more than six weeks after he was born. Jack required a small amount of oxygen to keep his O2 saturations at an acceptable level. At the time, I thought lugging around an oxygen tank in the freezing cold and snow was the biggest inconvenience of my life. (Ha!)

Once home, Jack appeared to be doing well, although he struggled to coordinate eating with breathing, which made feeding time very stressful for all parties involved. One night, sometime during the second week in January – I don’t remember the exact day, Jack, who at that time was able to easily move his arms and legs, was kicking so much that he kept setting off his pulse-ox because it couldn’t pick up his numbers. I was on “Jack duty” that night, which meant I was sleeping on the couch in the family room next to Jack’s basinette. I was so tired because I wasn’t getting much sleep caring for a newborn who struggled to eat. After being awakened more times than I could count for false alarms triggered by Jack’s constant movement, I was so desperate for sleep that I took the pulse-ox off of Jack’s foot. (Clearly, this was before I appreciated the importance of a pulse-ox.) After falling back to sleep, I was startled awake by a sound that I didn’t recognize but, for reasons I attribute solely to the grace of God, motivated me to get up and check on Jack. When I looked into Jack’s crib he wasn’t moving and his color was ashen. I picked him up and he was as limp as a ragdoll.  Everything I had been taught about CPR before leaving the Special Care Nursery with Jack was lost in my state of absolute panic. I ran over to the stairs with Jack in my arms and screamed for Mark.  Mark came running down the stairs, grabbed Jack out of my arms and proceeded to give Jack rescue breaths, which did indeed rescue him. I think it’s fair to say that I came a long way from that day when dealing with Jack’s future episodes of respiratory distress. I also think it's fair to say that had I not woke up when I did, Jack's journey would have ended that day.

Jack’s apneic event bought him an ambulance ride to Missouri Baptist Medical Center. From there, Jack was transported via a mobile ICU to St. Louis Children’s Hospital, where he was admitted to the Pediatric Intensive Care Unit. This was my very first experience with an intensive care unit and to say I was shell-shocked is an understatement. The lights were bright, there were multitudes of medical people milling around in a very small space, and alarms were going off non-stop all around me. I was overwhelmed and completely lost. 

They put Jack on nasal CPAP because his end tidal CO2 was 120 (normal is 35-45). I was a mess because I did not like seeing Jack hooked up to any type of breathing assistance. Little did I know what awaited us. While in the PICU, they discovered that Jack was born with an aortic anomaly called a vascular ring. Jack’s aorta arched to the right (normal is to the left) forming a ring with his anomalous left subclavian artery. The vascular ring was compressing Jack’s trachea and esophagus - an explanation for Jack’s difficulty with eating and breathing. On January 18, 1999, Jack had surgery to divide the vascular ring. I was terrified to see Jack after surgery knowing that his chest had been cut open and his sternum sawed apart. I remember slowly walking to Jack's bed after surgery, almost with my eyes closed, peeking just enough to take it all in a little bit at a time. Standing at Jack's bedside, I felt like I was going to throw up. He had so many tubes coming out of his tiny 5-pound body. 

post-op vascular ring division

Following surgery, Jack had a hard time coming off the hospital ventilator. They extubated him shortly after surgery, but he had to be reintubated and it was ten days post-op before he was able to wean from the ventilator. Jack was discharged approximately two weeks after surgery. When we walked out of the hospital with Jack, I thought the problem had been found and resolved and that Jack was on the road to recovery and a normal life.

I was so wrong.

finally off the ventilator post-op

Within two days of coming home, we had to bring Jack back to the emergency department at St. Louis Children’s because he was in respiratory distress again.  An X-ray showed that Jack had a partially collapsed right lung. Jack was admitted to the PICU again and was placed back on nasal CPAP again. He eventually transferred to the floor, where he spent another two weeks while they weaned him off CPAP during the daytime hours. It was also discovered during this admission that Jack had an elevated right diaphragm, which was determined to be the result of damage to the phrenic nerve during the surgery to divide the vascular ring.  Damage to the phrenic nerve is a known risk of cardiac surgery. Just one of the many breaks Jack never got.

After three weeks in the hospital, Jack came home on nasal CPAP and supplemental oxygen. But our reprieve was short-lived. Two weeks after being discharged from SLCH the second time, Jack landed back in the PICU because he was in respiratory distress yet again.  On March 7, 1999, Jack was intubated and placed on the ventilator. Jack never again breathed without the assistance of a ventilator.

One week after being admitted, the first attempt was made to extubate Jack from the ventilator. Jack didn’t last more than a few hours.  After Jack failed extubation, the decision was made to perform surgery to plicate Jack’s right diaphragm in an attempt to resolve the right lung collapse that was believed to be the cause of Jack’s episodes of respiratory distress.  

Following surgery on March 30, 1999, another attempt was made to remove Jack from the ventilator.  Again, Jack failed extubation.  At this point, the PICU team asked for neurology to consult because they felt that Jack demonstrated low tone and muscle weakness.  They didn’t know if Jack’s weakness was due to his prematurity and all the surgeries he had been through or due to an underlying disease. 

resting post-op diaphragm plication

As a side note, this was the beginning of me making waves when it came to Jack and his care.  In Jack's early PICU days, I wasn't yet tuned in to hospital politics and knowing who does what and, more importantly, who doesn't do what. Being the naive person I was, when I heard neurology wanted a muscle biopsy, I decided right then and there that I wanted Jack’s cardiothoracic surgeon to do the procedure because he had already cut on Jack twice and I trusted him.  Plus, he adored Jack.  The PICU staff seemed a bit uncomfortable with my request, but they honored it and forwarded my request on to Jack’s CT surgeon. The surgeon was kind enough to do Jack's muscle biopsy (bedside in the PICU). I say "kind enough" because, typically, cardiothoracic surgeons don't do muscle biopsies. They have more important surgeries on their schedules - like heart and lung transplants. In retrospect, I vaguely remember the surgeon not really being that happy about doing the muscle biopsy. (You could see and hear a lot more of what was going on in the PICU back in those days because the PICU rooms were pods separated only by curtains, which were usually open.) But, when he came over to Jack's bed to talk with me, he said "yes" he would be happy to do the muscle biopsy. He really wasn't!

But, I digress.

The preliminary results of the muscle biopsy suggested an inflammatory myopathy. Jack was started on high dose steroids and, after several weeks on the steroids, another attempt was made to extubate Jack.  Again, Jack failed. 

on high dose steroids and miserable

last failed attempt at extubation before trach

I first heard the word “tracheostomy” following Jack’s first failed attempt at extubation. I didn’t know much about a trach – I had never seen one, but one thing I did know was that I wanted nothing to do with it. I was adamant that I wasn’t going to consent to a trach until the doctors could tell me exactly why Jack needed one. I needed a diagnosis. In desperation, every time they attempted to remove Jack from the ventilator, I’d leave the PICU and go to the hospital chapel where I’d spend hours saying the rosary and begging God, Mary (the mother of God) and anyone else “up there” who might be listening, to please let Jack breathe on his own without the ventilator.  My prayers went unanswered. 

After multiple failed attempts at extubation and with all options considered and tried, ten weeks after Jack was first intubated, I finally relented.  I signed the consent form for Jack to get a tracheostomy, despite having no diagnosis or prognosis.