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 grimaces.  It is very frustrating to him when we do not understand.  It is not so much the pain but the discomfort around the tubing to the ventilator that is causing the distress.  

Part of his problem in weaning from the ventilator is that there are issues with the less left lung whether it is simply mucus (dreadful word), or extra fluid from the bleeding that continues (though not profusely).  In turn it is not expanding like the right lung and so, of course, he is desaturating somewhat.  The treatments are not pleasant for him, one of them is an almost type of pneumatic wrap around his chest which vibrates or beats his lungs to shake up whatever is in there.


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 to make his own breaths instead of letting the ventilator do it.  To do that he needs to be a bit more compos mentis.  He stirs for a few minutes and his eyes have opened briefly but not been able to focus.  He has been able to respond to commands, fleetingly.

He still has significant bloody discharge from his chest but hopefully that will reduce in the days that come.  The doctors continue to monitor the kidneys as they took a hit also because of the numerous transfusions and because he is now getting more doses of the immuno-suppressants.

A Good Night

What a relief to be able to say it.  He had a nice stable night and the very lovely nurse, Tracey, clipped his toe nails while he remained sleeping after I had expressed my horror at them.  The goal today is to try to get him to wake up more, and take more control of his pain medication.  This will allow him to eventually wean off the ventilator as he must breath on his own.  Today they will try to wean him off dobutamine which is helping his heart squeeze (pre-surgery he was on a pump which dispensed milrinone).

So now Iain does not have Pulmonary Arterial Hypertension.  I do not think we have been able to absorb this yet with him literally fighting for his life.  But what a sweet thing for him as we may be getting to a place where we can see forward a bit.  We know he has a lot of challenges to face but at least for know that pernicious, deadly enemy PH is no longer his sinister shadow.

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.

Closing the hatch

This morning at 4 AM we started weaning Iain off of the echo machine. The ecmo machine substitutes for Iain’s heart and lungs, oxygenation and pumping the blood through his body. In line with the ecmo machine, Iain's heart and lungs have not been contributing anything over the past few days.

His flow rate through the system was originally 5 liters/min. Shortly after 4 AM they reduced it to 2.5 l/min and held there to assess his heart and lungs. Of course Seema and I were there at 4 AM sharp to make sure everything was in order!

The initial reduction was pretty much without incident save for a slight irregular heartbeat that increased his blood pressure briefly.

Update on behalf of Seema and John

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

The plan is to completely take him off ECMO in about an hour.  The surgical team will take him off the ECMO in the room but keep his chest open.



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 over.  I think he can.  I think his body wants to take over.

John and I very grateful for everyone's support - from those who know us well, to those who have met us in passing, and the people we have not met but are part of our larger community.  I am not a social media person but for this challenge I read the comments for sustenance and read them to Iain.

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 heparin must be stopped and a coagulant added.  This means the only real option is to wean him off the ecmo fairly rapidly (very early in the morning) and then back in the OR tomorrow morning.  Ultimately it means he has to rely on his new lungs and his heart much earlier than the experts wished.  So Sarah or I will update in the morning.

Thanks all, I am telling him about all your messages.

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 been cleaned up and the padding that was put in to soak up blood flow has also been removed.  The next step was to administer heparin which he seemed to tolerate while in the OR.  So we have to see how he tolerates heparin for the next few hours.  The heparin is absolutely necessary for the ecmo machine.  It has been ok so far without it but would not be able to go too much further without it.  So let us hope he can continue to tolerate it.  We should be able to see him in a little while.

Thank you for the comments.  I (we) love them.

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 is worse.  Perhaps since they are in there now it would be better if it is localized and could fix it.  It is very important as they have to stop the bleeding to be able to really get the blood thinners going for the ecmo machine to do its job.

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