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Our Story

As many of you know Iain was diagnosed with Idiopathic Pulmonary Hypertension in 2004 after a regular visit to his pediatrician in Boulder, Jill Kamon. She had identified a loud second heart sound and concerned she referred him to Children's Hospital Colorado where he was diagnosed and ultimately treated by Dr. Ivy's team. Many children do not have that early diagnosis and we cannot thank enough Jill Kamon, Dr. Ivy, Michelle, Beth and so many more as they have given us Iain for the last 12 years. As most of you know those early years were a little on the stressful side as he was on IVFlolan. Later, he transitioned to Remodulin which gave us and him a break as it meant he could be away from us for more than half an hour. All good things come to an end and the therapies ran their course, Iain's health has declined over the last eighteen months and now he is undergoing a life-saving lung transplant at the Children's Hospital in St. Louis. 

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One Year Check-Up

The one year hurdle has been cleared.  No rejection means he has better than average chances of avoiding chronic rejection for a while.   His lungs are perhaps not moving air quite as efficiently as a healthy person but that is alright.  Not Continue Reading »

A Year Today

What a year it has been.  So many life and death events affecting our friends and family from all over the world in just a year.  On January 16th I was awake when the call came in from the transplant team.  I was awake as my close friend from Continue Reading »

Nine Months On and Zero Rejection

The further we get from the date of transplant the less likely Iain will suffer from acute rejection.  We just got back from St. Louis where Iain underwent a bronch and biopsy.  Happily it came back all clear with no signs of acute rejection and Continue Reading »

Iain is still Rejecting Rejection

Yes, we are happy to report Iain has thus far avoided acute rejection.  On the whole his results are looking decent. I have to admit on Monday evening I was feeling a little concerned because I sat in the nuclear medicine scans where you can see Continue Reading »

Sizzling St. Louis

Iain and I are back in St. Louis for his 6 month bronch and biopsy.  He has done very well in the two months since getting back to Boulder.  Iain has been making up for lost time with his gang of very close friends and has been making new pals. Continue Reading »

Home and Who to Thank First?

Iain and I arrived home last Saturday afternoon to a beautifully redecorated house thanks to our wonderful friend Doug Ryder.  (Just do not tell him I said that because he can be a right tyrant).  The house itself sparkled, the fridge and pantry Continue Reading »

Trach Removal Success

The trach removal was such a non-event that I missed it - so did Iain's nurse.  Day 2 and ENT want him to stay another night.  Everyone is scratching their heads in disbelief as he is absolutely fine.  Look how good he looks in these photos. Continue Reading »

Trapped In a Season of Grey's Anatomy

After Iain's bout with neuroleptic malignancy syndrome I had shared with Sarah and Lisa that Iain's trials and tribulations were even more intense than the fiction ER or Grey's Anatomy. could cook up  Now it feels like we are characters in a Continue Reading »

Missouri May Monsoon

It has rained constantly until today.  But with the deluge came a good week.  Iain is so much better.  John and I have felt guilty as we were not aware of the symptoms of his pneumonia.  His increased secretions and fatigue stealthily crept up Continue Reading »

Repeat: Yay No Rejection, Pneumonia Again

Strange this pattern.  Three bronchs, three different pneumonia's.  No, really the bronchs have nothing to do with the pneumonia that was diagnosed yesterday morning but had been developing all week (we know with hindsight).  The bronch did cause Continue Reading »

We Should Have Known Better

Here we are admitted back into the Heart Center.  We came in at 7.15 am expected to be released today. Initially, the broviac removal was a little more problematic than normal but that was why the head honcho of Cardiothoracic surgery planned on Continue Reading »

A Thursday Milestone

I have been amiss at posting updates as Iain's discharge has meant I could start working more rather than just when I was able to draw breath.  I have to thank my ColdQuanta people for being so terribly patient over the last few months and never Continue Reading »

However can we thank you?

Seema and John were clearly overwhelmed today when I sent them photos of all the volunteers who worked tirelessly in their yard.  This amazing group of volunteers offered their time to weed, prune, power wash, mulch, build a new gate (!) and Continue Reading »

April is National Donate Life Month video from St. Louis Children's Hospital

Please watch this video, keep watching from 1.28 to see one of the stars.  You do not need facebook to watch it (I do not subscribe).  I think you will like it. Continue Reading »

Escape Plan! How about Escape Party?

Pictures say a thousand words: Continue Reading »

Springtime in St. Louis - Update by John

It has been over a week since the last update. Alot has happened since that last update. Continue Reading »

From Everest to Ben Nevis

"What is she on about it?" you may ask.  Well if you consider his actual transplant ordeal as Everest and the graft disfunction and neuroleptic malignancy syndrome and other issues as K2 and the like, then Wednesday's news may be compared to Ben Continue Reading »

Iain's Opening Day

Iain was off the floor in the teen lounge today especially opened for him.  He batted and pitched and a good time was had by all.  No beer though or hot dogs.  Unfortunately, he is still not eating and nothing is appealing to him even the thought Continue Reading »

Science versus Superstition

Hah!  The plan early this week for the removal of the chest tube was to clamp the chest tube today (Thursday) and remove it on Friday.  The chest tube has been on water seal all week and the pneumothoraces seemed to have behaved.  However, Continue Reading »

This Thursday will be good

Iain is having his 2 month bronch to test for rejection as protocol.  He came off ICU service yesterday which is great.  On Monday he got a new trach which should help with the "speaking" valve, although it has not been tested yet.  Before he had Continue Reading »

Thursday going on Friday Repeat!

On Wednesday at 3.00 am a roof tile in Iain's room disintigrated and proceeded to drip nasty brown liquid on poor Elodie, Iain's nurse.  Although she dealt with it calmly without waking Iain up, by 7 am the ICU team decided that it would be too Continue Reading »

TIme to Break Out the Smart Watch

Iain did 6 laps in a row around the unit today which is his record.  So I will bring in his watch so we can start recording his progress more consistently.  Remember as he is doing this he has to be attached to various pumps as he still has a Continue Reading »

Iain "the Beast"

As Iain walked by yesterday with his two chest tubes and no walker, one of the cardiology fellows, Manish, mentioned that Iain was a beast and he should be set up as an example to other patients to what they can achieve.  I have to admit, it has Continue Reading »

Iain's Orders

Is that we need a much better photo. This is from yesterday on the roof top garden with Sarah Dorman wearing his new Adidas hoodie from the professional climber Libby Sauter who is also interestingly enough a pediatric ICU nurse. Continue Reading »

Today's Goals

Iain is currently in Intervention Radiology where they will use the images from yesterday's CT to try to repostion the two chest tubes to better extract the air around the lungs.  These pneomothoraces are his real remaining medical issue, granted a Continue Reading »


I was lured away by Marie-Laure who came down from Cincinnati and Sarah D. who flew in from Virginia for good food and very good wine on Saturday night.  The fellow this week, Rachel, and Iain's nurse, Daniel, who were on duty during the day Continue Reading »

Brownies on the 4th Floor

Iain started to recover last night from the collapse of the lower left left and although back on the ventilator yesterday he managed to walk around the whole heart center.  He did the same again today and also went to the 4th floor with a Continue Reading »

Thursday - One Day it Will Be Funny!

This morning, I awoke to Iain asking the Pulmonologists how quickly he could get off support.  Everyone had been encouraged how yesterday he had done 6 hours off the trache and walked 250 ft without ventilator support.  He asked to go back on the Continue Reading »

Defying Expectations

Iain's goal this morning was to walk with the walker to his doorway and by the end of the week it was to be about 100ft.  This morning he kept walking out of the door.  By this afternoon he had done a solid 250 ft to the acclaim of the entire Continue Reading »

Super Saturday

Iain had a great day.  He managed a trip to the rooftop garden on floor 8 with his entourage.  He slept last night.  And best of all his brother came in from California.  To those who may be wondering, Simon our 11 year old has been lovingly Continue Reading »

Calamitous Thursday - Largely Averted

Well, he probably had about four mildish seizures today.  We think it may be directly related to his lack of sleep over the last 2-3 nights.  I am staying here tonight to see if we can break the trend of anxiety and lull him to sleep.  I think he Continue Reading »

Rolling in the Ward

Iain went for a ride in his wheels around the CICU, with his entourage of 6 to cheers and a standing ovation from his fan club among his doctors and nurses. Seriously though people were thrilled and Carol helped him stand for two minutes.  The Continue Reading »

Son is Rising

This morning Iain got into a chair for 30 minutes.  It took a huge amount of effort to stand up (and four people).  It was a scary endeavour for Iain but he did it.  Everyone was delighted although Iain himself found it very stressful.  You have Continue Reading »

Sleepy Saturday So Far

Iain woke up this morning and was able to write a question on whether he had been able to sleep.  This may seem odd but I was delighted as it meant he is having higher levels of questioning.  He had understood that it was a worry that he had not Continue Reading »


Iain had another bronchoscopy this morning to see if they could see a small leak or pulling apart of the areas where the lungs were attached.  Nothing was observed, perhaps it was too small to be seen by the camera?  The reality is that everyone Continue Reading »

Iain hates Thursday and Friday

-Update from John Continue Reading »

More updates - John this time

-Update by John Continue Reading »

More Bad News

We are heartbroken for our son that today he started seizing.  He had had his third sleepless night in a row and was still answering questions albeit it weakly.  He probably started around at 10 am and I am sorry to say I think I did not recognize Continue Reading »

White Nights

As you know Iain has had a particularly rough ride through the transplant journey. Just as we thought he had burst through to the other side, Iain got hit with another case of ICU delirium (though why we would tempt fate like that, I do not know). Continue Reading »

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 Continue Reading »

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 Continue Reading »

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 Continue Reading »

Friday morning

-Update from John Continue Reading »

A day riding the Kingda Ka

-Update from John Continue Reading »

Update on Iain - High fever

-Update by John Continue Reading »

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 Continue Reading »

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 Continue Reading »

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 Continue Reading »

Adjustments to Expectations

As of the date of Iain's surgery I think my expectations have been on hold regarding his outcome.  Never fear I have not lost hope at all and am amazed that Iain has that fortitude to fight for his life day in day out.  However, for everyone else Continue Reading »

Nurse Kelsie's art work

Iain's bow tie! Iain definitely does not like being turned and gets agitated but all in all his oxygen looks better when he is prone;we try to tell him it is better for his lungs although I am not sure he is convinced but then they give him more Continue Reading »

Another calm day

-update from John Continue Reading »

What a difference 24 hours can make...

(update by John) Continue Reading »

Struggling for Oxygen

Today has been a tough day for Iain. Oxygen levels in his blood have been trending down, and the doctors have been aggressively attempting to remove fluid in his lungs that is contributing to those low oxygen levels. We had to re-sedate him as he Continue Reading »

Mixed bag

Hello, Continue Reading »

Photo - not horrible

Hello All, Continue Reading »

Thank You to a Family Grieving

I am listening to a helicopter on the roof of the hospital. Someone's else's child is in danger and I feel for them whether that child is coming for emergency treatment or is waiting for organs to be delivered.   We, the Hess family are so very Continue Reading »

Sunday morning update

Iain is more awake.  We have been trying to explain that he has had his transplant and for him this will be the worst time of his recovery.  He does have some comprehension and he is trying to communicate his discomfort to us with his hands and Continue Reading »


As many of you have been asking I thought I would update.  Iain is still struggling to get out of the fog of sedation.  It is a fine line between being able to tolerate the pain of the surgery and discomfort of the ventilator but he has to be able Continue Reading »

A Good Night

Continue Reading »

Eyes Not Quite Wide Open

But he is trying to open them. The paralytic was taken off a few hours ago and he is suddenly beginning to respond. He looks asleep but he is really trying to respond. We are very excited. Continue Reading »

Update on behalf of Seema and John

Iain is clamped off the ECMO and seems to be holding his own so far. Continue Reading »

Tentatively so far the heart is staying strong

They started the weaning process of the ecmo machine at 4 am. This means his own heart and lungs are doing 50% of the work the machine was doing for him. So far so good. They will do a test clamp later this morning and hope that his body can take Continue Reading »

Alas Iain Does not LIke Heparin

Unfortunately, Iain is not tolerating Heparin.  He is bleeding again quite a lot.  Since they could not find anything specific it must be generalized oozing.  Since he is losing so much blood and continuous transfusions are not good either, the Continue Reading »

Cautiously optomistic after OR

Iain's heart is working well with some help from medicine.  The lungs look Ok.  Both need more time to recover from the ordeal of the massive transfusions from the surgery.  It looks like the areas of concern from the XRay were clots which have Continue Reading »

In OR now

It is fairly likely the white areas they saw in his chest cavity on the XRay was blood. The surgeon wants to see if they can try to localize specific areas that could be cauterized. It could be more generalized oozing. I honestly do not know which Continue Reading »

Update on behalf of Seema and John

Seema has asked me to update the blog this morning. I will do my best to convey the brief news I received this morning. Continue Reading »

John's reflections and the next few days...

Thank you so much for your kind words and wishes for Iain. Seema and I have been frankly humbled by our friends who have been praying and sending positive energy Iain's way. Thank you! Continue Reading »

Please post you comments on Seema's blog

Seema and John have been overwhelmed with the outpouring of love and support from their friends and family.  They are extremely grateful for the phone calls, emails, texts etc.  They are sorry if they cannot respond to everyone, but please know Continue Reading »

Finally a light..

Finally we are seeing the bleeding out of the chest cavity slow down. It has been a long hard battle. He has had continuous transfusions but now needs fewer. He has had constantly a minimum of four to five people looking after him at one time, often Continue Reading »

Just out of surgery and into ICU

Good morning, Much of the night was spent attempting to find the source of the bleeding around Iain's left lung. We initially thought that source was found, but at around 2:30 AM CST it was determined that his bleeding was still too high and another Continue Reading »

Update on behalf of Seema

Dear Friends and Family Continue Reading »

Off Heart Lung Machine

Iain has been off the heart lung machine for about an hour which is great. He does have a fair amount of bleeding which is less welcome but not unexpected given that he was on blood thinners. It is a fine line for the medical team to walk as the Continue Reading »

New Lungs Are In

Iain's new lungs are in and they are working to take him off the heart/lung machine. Continue Reading »

Good Bye old lungs, hello new

Iain's lungs have been removed and the new healthy lungs are being prepared. We cannot express fully our gratitude to the donor family for allowing this life-saving procedure to take place for our son. We are so happy that Iain will have a new lease Continue Reading »