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Friday, November 13, 2009

The end - it is time to stop

This is my stopping point, I (dad) can’t do this anymore. It is far too painful to remember the things I remember and I need to move past the pain. I conclude this blog with an account of Andrew’s last night and a little from the days that followed, done way back when it was therapeutic for me to write it.

I ask and invite my immediate and extended family, my friends and acquaintances, and all the people who were touched by Andrew to email me at and I will add those entries to the blog as I recieve them.

Before I end this, I need to acknowledge three seemingly little things that helped me and wll remain with me .... a beautiful comment from a close and life-long friend, a thought to get me through the day(s) from a co-worker and friend, and a saying from a follower, lifted from her blog, that will always be with me


(From Fran on Facebook)

"Yesterday I was witness to the most beautiful show of familial love on earth. Three siblings honoring their brother at his funeral with loving words far beyond their young years. This service will forever remain with me, not as something sad, but as.a wonderful tribute to a great life. Andrew, Thank You for allowing me to know you.
Rest in Peace.
Until we meet again.
'Auntie' Fran"


(From Robin at work, in reference to my “one foot in front of the other” answer )

"Everyday will get better and you will find your feet will work better and faster each day as well.

Memories are a great gift (that) you get to keep forever"


(From Liz Saling’s blog)

"Even God had some Autistic moments, which is why the planets all spin."



September 25

September 25 dawned bright and sunny. Dad had spent the night at the hospital and wasn’t going to work because of the CT Scan that was scheduled. In the morning, dad spoke to (someone) and they discussed how even though there were relatively small issues that had not improved, they also had not worsened and overall, I seemed to be improving.

Mom came in around 8:00 (just as I was leaving for the CT Scan). At 7:30 or so, the dialysis had been stopped, as had been scheduled, to change circuit and to allow for me to go for the CT Scan. Just before 8:00 they took me down and almost as quickly as I had left, I was back !. Mom and dad were curious and wondered aloud why it had been so quick. I could tell they suspected there was something wrong but they were so pleased that I seemed to be improving that they pushed those thoughts aside. The PICU Dr’s came for rounds a little while later and they decided that the restart of dialysis should be postponed to let my blood pressure stabilize since I was close to the limit for fluid withdrawal anyway. There was also discussion about my overall condition and how I seemed to be on an upswing. The GI Dr. was there (in rounds) and dad brought up the jaundice to her. She said she was sure that there was no liver damage – nobody agreed with her but they didn’t really discuss it beyond that.

A short time later, a Dr came in to give mom and dad the results of the CT Scan:

• Evidence of old ischemia (but can’t tell how old)
• Spleen and kidneys hard to visualize due to fluid
• Everything else looks fine

BUT, When mom and dad expressed surprise that he was still there after being there all night, he made a remark that they don’t want to see him because if they do, things aren’t good. (“when you see me, that means trouble”)

A little later, an EEG was done but mom and dad never got either explanation for it or the results. They assumed that it was the EEG nuero had been trying to have done for the past two-plus weeks. Things were “normal” after that – mom and dad had coffee and dad worked. Very suddenly, around 10:00 or so, my MAP (mean arterial pressure) started to dip - not a significant amount – and it came back up, but not quite to the previous level…..Then, near 11:00 my MAP dropped to 40 and hung there. My MAP continued to fluctuate and even decrease more so the nurse started me (again) on Epinephrine and dopamine. Someone mentioned during this that there was a third Blood Pressure medicine that could be used if necessary but there was no medication to use after that. Slowly, my MAP recovered but again, not quite to where it was before. Again, my MAP took a dip and from that point on, just hovered in he 46 – 70 range. I remember dad noticing that for the first time, the Dr’s were noticeably scrutinizing the systolic and diastolic pressures instead of just the MAP. Dad caught a Dr. and asked her the obvious question and she just said “this a big step backwards”.

Pediatric Surgery came in to change my belly dressing and didn’t seem any more than mildly concerned. They told dad the wound was same as had been. Dad noted my weight at 116.4 lbs – just over 6 lbs heavier than my “dry weight” ! Another good sign !

Dad has noticed through the day (and actually during the night last night) that I am difficult to suction…seems to be a lot of accumulated phlegm in the back of my mouth. And I seem to him to be having a harder time breathing - not significant so, just enough to mention. And …

Cool – they are hanging FFP (fresh Frozen Plasma) to give me a “booster”. Thatmeans they will start the dialysis again soon.

Sometime in here, a Dr. came in and brought up to mom that she had mentioned a negative experience when I was born and wondered how they had handled it. Then the conversation de-evolved to a general “bad outcome” discussion. Still mom and dad were so wrapped up in things that they didn’t realize what was happening. Early in the afternoon, an EKG was done and without explanation as to why. The technician said that things “looked OK” and disappeared. Shortly after that, Respiratory came in to set up a third CPAP trial to see if I could be extubated. Hurray ! Steve was the respiratory therapist's name. He and the nurse joked back and forth for a while and when I started to “gurgle” again, the nurse suctioned me. Dad heard the nurse say something to Steve along the lines of “look at this” and showed him the suction tube which was reddish tinted. Dad noted this because he had never seen the tinting before. Steve left, the day nurse went to do the shift change things and my evening nurse (one of my favorites) came on. This nurse too noted the difficulty suctioning me and the tint to the sputum. Dad asked her about it and she, a little evasively, said it wasn’t abnormal for the amount of time I had been on the ventilator and that she had even seen worse. 

The Attending came in when she came on duty and did her assessment and she seemed concerned that she heard "heart sounds". The day nurse who was still transitioning to the evening nurse, confirmed that the Attending had in fact heard something. Another Dr (whom I had never seen before) also confirmed the sound. Dad asked about it and was told it was not a concern – it sounded like fluid shifting as my heart beat. It didn’t dawn on Dad to ask why there was “suddenly” fluid around my heart or why three medical professionals had listened intently to "nothing".

Things more or less stayed stable until ….

Suddenly, around 9:30 p.m., my heart rate dropped to 84 from a steady mid-130’s. It came back up but hovered, fluctuating in the 100 – 131 range. This happened repeatedly over the next few hours and everyone seems to be getting concerned. Then, around midnight, a chest xray was done and ……..

September 26

The Attending came in and told dad that the xray “was solid white”. Dad, even though he was fairly sure what that meant, asked her what it indicated. She just said that my lungs were completely filled with fluid and said that I was getting less than 40% Oxygen, even on a ventilator setting of 100% oxygen. That dialysis is going to be restarted to pull off fluid but there was a concern that my blood pressure might not tolerate it...and if it doesn’t, there is nothing more that can be done !!!.

What !! ??

It took three tries to get the damned dialysis machine to prime. Dad remembers thinking two things –

“Why is it taking so many tries to get this going and why wasn’t it started on "even" (input = output) in the morning when he wanted it started”.

Finally the machine primed but as soon as it was connected to me, my MAP dropped to 29. The Attending ordered the “blood returned” - set the machine to return any blood taken from me. None had been but doing a "return" was necessary to preserve the machine setup and not have to reload it if it is used again.

But the dialysis had to be shut off before the return cycle could even complete because my blood pressure wasn't tolerating it.

At 1:30 a.m., the Attending told dad that there was nothing more that could be done and that I would not make it through the night......

I won’t detail those private moments I spent with my family after that except to say that dad made several calls and my loved ones all came to be with me.

Near 5:10 a.m., one of the IV pumps “failed” and dad asked the nurse and Attending to start shutting down the medicine pumps. The pump that had “failed” was the epinephrine that was keeping me going this long . It was not reset and after a long nite, I died at 5:21 a.m..

And so, on this beautiful Saturday morning, I left my family and this earth and returned to my God.

Dad asked the hospital to leave me in my bed until my Aunt could get there from New York and see me before I went “downstairs”.

After the long night, all dad could manage to do was post on twitter “My special boy Andrew passed away this morning at 5:21. Thank you all for your thoughts and prayers during our difficult times.”

Later September 26

Dad posted to Facebook and Twitter

"Andrew Elliott Montague Shaw July 3, 1991 - September 26, 2009
We are in unimaginable pain at the lose of Andrew but we thank God for the time we had with this remarkable child and ask that our friends and family offer prayers of thanks for his short time on this earth"

October 1

Dad posted to Facebook and Twitter

"Yesterday a beautiful child was laid to rest in a beautiful service surrounded by those who loved him and whose lives he touched. God bless everyone who shared our grief in Andrew's passing."
November 13, 2009
Andrew has been gone now for eight weeks now. 
Life is returning to the routine but things will never again be norrmal.

It is not easier, time is not healing this wound. The pain is a constantly there liske a club over my head, ready to strike at any time and for no particular reason - a song, an odor, a snippet of a conversation, a glimpse of an object or person.

Some things are fading from memory, and with that comes more pain because all we have are the memories.... and yet, I can barely remember how Andrew looked on July 26th but I vividly remember - in fact I can't forget - how he looked so bloated and barely resembling himself that last night in the hospital.
This is how my life, as it pertains to Andrew, will be until I die. I pray that my faith is true - that when we die we see those who have departed before us - and that I will see Andrew, spoon in hand and GameBoy pressed to his ear, walking shakily toward me, every bit retarded and disabled as he was in life for this is the boy I lost and the one I so desperately miss.

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