ECMO machine after bypass surgery, “unknown” stroke, not waking up. ICU staff error?

[angelphase]

Hi everyone,

My uncle (49 y/o, diabetic) is currently hooked up to an ECMO machine in the ICU. He went to the ER a week ago due to shortness of breath and nausea, turned out he had a heart attack a week ago and he’s having another one. He was still talking normally and was very confused. The EKG showed that his heart was 90% blocked and needed an open heart surgery right away. They put him in an induced coma (in which he never woke up from). After the surgery, the doctor said his heart may need support from an ECMO machine, so they flew him by helicopter the same night to another facility. The next day, he got another open heart surgery to remove fluids from his lungs. This is where I’m concerned. A day after his surgery, they told us that he had suffered a stroke. However, they were “unsure” if the stroke happened before or after surgery. How could they not know?

My uncle has not woken up since and they assume it’s because of the stroke. Furthermore, a couple days ago, they noticed his toes “didn’t look right” (he had an Impella pump on his right leg). The doctor in charge didn’t want to run a CT scan because he’s afraid it may further harm his liver. The next morning, they found out his leg tissues have died and now he needs an amputation. They did cryoamputation on him because they didn’t want to risk more complications. I just got back from visiting him, he is still in that condition now, I’m going back again tomorrow.

On top of being worried sick, I have a few questions regarding the ICU:

1) The stroke. How could they miss SUCH an important detail? Is this common or was it overlooked?

2) If they noticed his toes “didn’t look right”, why wait to act? My uncle will lose a leg and the amputation surgery would add further unnecessary complications to his condition.

3) He is still not waking up. They will remove the ECMO machine in a couple of days, but they said if his heart can’t work on it’s own, they are out of options and we will need to “figure out what to do with him”.

I have faith that the ICU is trying their best, but I can’t help to feel somewhat angry and confused. When I asked them for the detail, they were somewhat defensive and gave me different answers.

Thank you for reading and your support.

[angelphase]

Update: they will take him off ECMO tomorrow and put in a “balloon” device to help support the heart. It was inserted from the arm due to the leg loss. However, this device has clotting risks which may cause him to lose that arm. Asking for anyone’s knowledge, experience or expertise in this situation 🙏 I’d like my uncle to keep has much of his limbs as possible of course...

Also, it’s strange that he hasn’t woken up. Has anyone experienced relatives with no brain damage who didn’t wake up after major surgeries?

[sheila21 in reply to angelphase]

So sorry about your uncle, Angelphase. His condition sounds very complex and far reaching. I am sure the professionals are doing their best though he is so young to have so many problems. I hope he awakens soon and further damage is not done.

Sending best wishes and thoughts.

Xx

[angelphase in reply to sheila21]

Thank you so much, Shiela 🙏. I hope he awakens as well, the doctor does not know why he hasn’t.

[Sepsur]

I hope your uncle stabilises soon, his condition, as sheila21 wrote, seems very very complex. Best wishes

[siztuhk]

Hi,

I am sorry for your situation and pray that your uncle comes out of this. My husband was also on the echmo machine for 2 weeks. They do not like to have patients on the machine for that long. They were very defensive with me as well and I still feel like they did not do everything they could do. My husband too had his extremities drying up, in my husbands case it was his hand. They warned me before putting him on it that he may lose a limb because the machine does not get blood to all parts of the body. This is very sadd, I suggest that you go to the patient advocate and request that someone give you more answers.

[angelphase in reply to siztuhk]

Thank you Siztuhk, I am sorry to hear your husband went through the same. It is a tough situation. What is the patient advocate you mentioned?

[siztuhk]

Hi every patient has a patient advocate, you can ask the head nurse on the floor about it. They also have a team of professionals that take care of your loved one, they should be able to sit down with you and explain what is going on.