To Trache or Not to Trache?

That was the question posed to Iain by his critical care doctor, Ahmed, today.  He was given the options, pros and cons and we allowed Iain to make the decision.  Wisely he opted for the trache (sp?).  That is scheduled for tomorrow and we expect it to allow him to wean from the vent more rapidly than if he were to remain with the tube down his throat. Yesterday Ahmed left around 4 pm after giving us a frank assessment of how the neuroleptic malignancy syndrome had really set back his recovery significantly.  Today he expressed his astonishment at Iain sitting up, lucid and able to write pretty well compared to yesterday.  Iain still has a long way to go before being weaned but it is marvelous to be able to get his imput into his care.  He is very motivated to get his strength back.

An Outsiders Perspective

I was recently privileged to visit Iain, Seema and John in the Critical Care ICU at St. Louis Children's Hospital.  I thought it may be helpful for all of their friends, family and supporters from all over the world to read an outsiders perspective of what the Hess Family deal with day in and day out.

Momentarily I would like to shift focus from Iain onto Seema and John.  Seema and John's daily schedule is brutal, sleeping when then can, rising early to be by his bedside, staying late until they are comfortable that Iain is settled and stable.  Each day they are inundated with complex medical information from various medical departments: Pulmonologists, Neurologists, Nephrologists, ENT Doctors, ICU Critical Care Doctors, ICU Surgical Doctors, Physical and Occupational Therapists etc etc.

A couple of smiles

Iain was a different person today.  As Dr. Said, the fantastic critical care attending said, he was three times as sick yesterday and bearing in mind he is in the Cardiac Intensive Care Unit that was really saying something.  I have to admit the nadir of yesterday came as Iain's lung collapsed and suddenly there were a lot of people not moving and just looking into Iain's room where there was already a large crowd again saving his life. It was almost surreal.  Fortunately, his symptoms have abated and today we have been able to communicate.

Friday morning

-Update from John

Yesterday was a crazy difficult day. Iain's temperatures were highly elevated, his heart was racing due to low cardiac output and his body was stiff and continually seizing. Exhausted, we left him late last night to get a brief amount of rest at the apartment.

When Seema, Sarah and I came up to his ICU room early this morning, we were bathed in the light of a brilliant sunrise:

and greeted by Iain...

I'm not going to go overboard and jinx Iain so I will be understated. He looks better...   :) 


A day riding the Kingda Ka

-Update from John

Today has been a rollercoaster ( This morning his temperature was spiking into the 106+ range. After chilling him and massive amounts of antibiotics, his numbers have come down a bit. We are waiting for cultures to reveal the source of the presumed infection.

About an hour ago he suffered a collapse of his right lung. It's been re-inflated and is operating as expected. A terrifying few minutes and a setback, but not something he and we will not overcome.

Tonight, hopefully, stability and rest for the boy. He is an incredible fighter and is not giving up.





Update on Iain - High fever

-Update by John

Things have taken a turn for the worst as of last evening. Iain has experienced a significant fever (106 F) that may be the result of a massive infection. Cultures are being run now to confirm.

He's not awake at this point, and he is going back on to the CVVH (continual hemodialysis) to help with his reduced kidney function.

I'll be updating the blog as more information is made available to us.


It is Pneumonia - YIPPEE

Yes, that is what we have come to.  We are all delighted here that the rising white count is due to the bacteria he has acquired since being in the hospital.  The reason this is thrilling is because it is not due to rejection. Of course, it is a mite disturbing that he got it here but he is massively immuno-suppressed.   

Iain has had a tough day personally because of the terrors he is experiencing.  We have been able to keep him awake most of the day, albeit a terrifying day or him.  Unfortunately, they had to give him large amounts of anti anxiety drugs this afternoon to get a nasal feeding tube back in him so he is now zonked out and I could not tell him what his daft friends have been up to.  He is going to be horrified that the green machine has been dented.

As much as I hate to tempt fate, I believe tomorrow we will be able to communicate more effectively.

Mind needs to heal also

Poor Iain, the only way that he can come off the ventilator is if becomes more cognizant and can breath on his own.  To do that the sedatives have to be reduced.  Today Iain did come out of the fog and was obviously terrified.  It was a terrible thing as we could not get him to understand that it would just be a phase of the recovery.  He was trying to rip out the ventilator (which would have been horribly painful).  In the end they had to give him extra sedatives and so the wheel just keeps turning.  Tomorrow will be another day and perhaps today was worse because he had an anaesthetic for the bronchoscopy. 

He did tolerate that procedure quite well and they managed to remove secretions and do the biopsy without causing a pnuemothorax (a collapsed lung - I will be testing everyone when this is over).  We will get the biopsy results tomorrow.

Sunday wave

Iain had a couple of milestones today with all of the remaining chest tubes removed and being taken off the continuous dialysis. There seems to have been a bit of clearing around the lungs on the X-ray and they have been able to turn down some of the settings on the ventilator. He was still fairly out of it until later this afternoon when John was trying to persuade me to go to eat.  I did not want to go as it appeared Iain was stirring.  John said it was fine as Iain was not compes mentis so I told Iain what John had said and then asked him to squeeze my hand if he was indeed compes mentis and you know what?  He obviously squeezed my hand and we got a tiny little smirk.  Later he managed to keep his eyes open for several seconds at a time for Olivia on face-time and then Simon and the Prakashs in California were treated to a little wave. 

The Grand Tour...

As many of you know Iain is obsessed with super cars, almost as much as those boys from the Grand Tour, formerly Top Gear.  Well today our task for Iain was to try to keep him awake during the day and try to wean him off sedatives so that he can start the process of breathing for himself.  We read to him, asked him numerous questions, prodded him, poked him but the only time I got a clear nod of the head was when I asked if he wanted to watch the 1st episode of the Grand Tour.  So for the Brits, can you imagine I was momentarily grateful for Jeremy Clarkson! Good grief what a thought.

Seriously though, his oxygen saturation was ok, not great but ok is good and his blood pressure was high but not sky high, he also made a little eye contact; so although I am apprehensive of allowing myself to feel a little relief, I do.

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