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 who has been so kind to follow us and  and for those who have not gone through this process it might be difficult not seeing a continuous improvement. So I wanted to warn you that we may have reached a plateau for a while in the improvement of his lungs.  It seems that proning is not really having a big difference now in his lug compliance.  Also, he clearly hates being prone so he has to be sedated heavily when he is in that position.  This is, in of itself, problematic for various reasons. When he is prone he needs much higher doses of blood pressure meds and all of these hurt the liver and kidneys.  So, they may discontinue proning, it has got him as far as it can.

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 sedation and it does not matter anymore.  A bit of good news is that the output from his chest has decreased to a point where they were able to remove two of his five tubes, which, should also make it easier for him to be on his front.

Another calm day

-update from John

Good evening. Like yesterday, today was calm and uneventful! Iain is deeply sedated while he "rests" on the continuous dialysis and respirator. Over the course of a few minutes, he squeezed our hands a couple of times as the effects of the morphine were wearing off. They quickly sedated him again at that time to keep him as still and as calm as possible. Hopefully Friday and this weekend will see similar progress as his lungs gradually improve from their injury.

Good night, John





What a difference 24 hours can make...

(update by John)

What a difference 24 hours has made. Yesterday at this time Seema and I were terrified. Now not as much. The hypothesis that Iain has suffered from acute lung injury due to extreme blood transfusion volume appears valid. He is now on continuous dialysis to protect his kidneys and has been turned over to a prone position. 12 people and 2 hours to turn him from back to stomach!

All of his numbers are dramatically improved. His oxygen saturation and CO2 clearing are at very good level and his lung compliance (the elasticity of his lungs) is better than expected given the injury.

This phase of the recovery is going to be gradual and hopefully entirely without drama. The doctors are always careful to set expectations regarding timeframes, but we can expect this to take "days to weeks."

Busy staying ahead of the situation

Good morning.

As Dr. Ivy, Iain's physician at Children's Hospital, said to me "...this is going to be a roller coaster."

Unlike the craziness that Iain experienced yesterday afternoon and evening, the night was calm. He has been sedated and his vitals have remain steady.

Today the doctors and nurses are taking steps to protect the kidneys and lungs. He'll be on a continuous form of dialysis and the ventilator will be changed to reduce the pressures and total volume of air introduced to the lungs. The current theory is that he's suffering from acute lung injury (graft dysfunction) resulting from the enormous amount of blood what was necessary during surgery.

The biggest production today will be to switch him from lying on his back to lying face down. It's non trivial with all of the access points and draining tubes in his torso.

The goal today is to keep him stable and not cause more injury.

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 was struggling against the ventilator and driving his O2 levels down even further. Right now he's sleeping.

We are unfortunately approaching a point where, to save the lungs, we may have to sacrifice the kidneys. The lungs are too wet, and need to be dried out. This is done through the use of diuretics, which places a greater strain on the kidneys. His kidneys, already under the strain of antibiotics and more importantly immunosuppressants, are being pressed to their capacity. At the same time, we need to push the lungs harder to keep the oxygen levels up, which results in more injury. It's a vicious cycle and and makes me realize that, in a healthy person, how beautifully balanced our systems are.

Mixed bag


The bronch was delayed as they decided they wanted to do it in the OR rather than bedside given his oxygenation status.  The bronch would help clean the lungs and they will also biopsy the lungs to check for rejection. Normally it has been done by this time but given the circumstances they had decided to wait.  Iain had an uncomfortable night with post surgical delirium.  He seems to have his night and days mixed up so we are trying to wake the kid up, and you know teenagers.......  He has had to undergo a lot of very uncomfortable treatments to help expel the horrible stuff in his lungs so that also makes him sleepy.  We have not seen his eyes really focus on anything yet.

Thank you transplant families for your words of wisdom at this time.


Photo - not horrible

Hello All,

I have refrained from photos as I am sure most of you did not want to see photos of Iain with his chest cracked open or in distress.  However, since John and I feel fairly optimistic we decided to share a photo of him.  He is still struggling with the ventilator but many of his other markers are beginning to show improvement.  We know that it will not be plain sailing from henceforth but we remain positive. Look at those eyelashes!

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 grateful to the family who allowed the donation of their family member's organs.  I also want to thank the surgical team, who literally worked around the clock to save Iain's life on Tuesday through Wednesday morning and the incredibly caring and proficient nurses and doctors who have continued with that life saving care.

Iain is more aware of his discomfort and all the chest tubes, leads and other tubes coming out of him, but tonight I got glimmers that he is beginning to initiate requests to be suctioned and so clear his lungs.  This is a step forward, instead of merely being a passive recipient of care.

Information about COTA and donating

Why COTA for Iain?

Lately, several people have been asking “Why don’t you use something easier like GoFundMe?” or "Why can't I hand over cash?" or "What are these donations for?"

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