Nicholas had a relatively uneventful night last night, only waking up to pee twice. He slept pretty hard until about 3:00 a.m. and then watched movies until I got up around 6:30. He had a chest x-ray at 5:00 a.m. and the cardiologists came in and said echo would be first thing this morning. Just like yesterday and the day before, we are hoping for the left ventricle to show signs of improvement to reassure the team (and US!!) that the left ventricle won't go into failure due to a too tight PA band.
I also brought up this question during rounds this morning: If the left ventricle is struggling and the (septum) has shifted past the midline and into the right ventricle, does that mean that the right ventricle and therefore the tricuspid valve could be harmed by a too tight PA band? Remember, normally the right ventricle's job is to pump de-oxygenated blood at a low velocity into the lungs to pick up oxygen. Nicholas's right ventricle is on the left side of his heart and it pumps oxygenated blood out to his entire body under normal systemic pressure. The risk I referred to above is that the tricuspid valve normally works under low pressure, and if his systemic right ventricle has to work even harder than it has been for the last 10 years of his life, then it is also at risk for some degree of failure. So the team wants to be sure the band is not causing more problems on not just the left ventricle, but also the right ventricle.
The echo tech was in the room at around 9:00. She took a bunch of images and the doctors said they would let us know as soon as all the eyes that needed to see them saw them. By noon we still had not heard anything. We were really hoping for improvement, not only because it means the LV is handling the new requirements imposed upon it, but also because it meant Nicholas could have a few of the lines removed from his chest and finally get out of bed. He cried to us this morning that he wants to go home. I don't blame him, this has been really hard on him. He is brave to a fault; he never complains or cries in front of a doctor or nurse. I really worry that the biggest scar he'll come out of this won't necessarily be from his wounds on his chest. It might be from the emotional trauma he has been dealt.
Dr. Patel came in at about 1:00 and said that on echo the LV looked ever so slightly better today than yesterday. So she sent one of the Physician Assistants to come in and pull the LV cardiac line. We had to wait for about an hour to make sure no fresh amounts of blood started draining from Nick's chest tube before it could be pulled. About an hour later, she was back to pull the chest tube. Holy moley, I will never get used to seeing that sight. The chest tube is about the circumference of my finger and wraps around the heart inside the chest. It is probably in there about a foot long. It drains out the tube into a calibrated box, which measures how much fluid the patient has drained from around their heart. Nicholas has not had much drainage for about the past 24 hours so they knew they wanted to pull the chest tube, but not until the LV cardiac line was out first. So thankfully both of those came out today.
**A note about the left ventricle: Yesterday, March 24, someone had raised the amount of dopamine from 3 to 5. So when Nicholas had the echo this morning, the LV was pumping with more help from the dopamine than had been measured the previous mornings when the dopamine was at a 3. Dr. Patel said they reduced the dosage right before the echo so she felt that the heart was being measured consistently, but I can't help but worry that the "ever so slight improvement" today was actually residual dopamine helping the left ventricle just slightly more than with the lower dose.**
The nurse also removed 2 IV's from Nicholas's left wrist. That was a big relief to him, although he still has one more in there.
Nick ate really good today, drank really good too. They weaned him completely off of oxygen and he is staying in the mid 80's to low 90's on room air. This will probably improve even more once he starts moving around more. His lungs are not working too hard just laying in bed and not even being upright.
This afternoon, since all the lines had been pulled and he was doing well, the nurse helped him out of bed and into a chair, where he got to bring a t.v. and x box into the room to play games. He was so happy. He stayed in that chair for a couple of hours and we even saw him smile a bit!
At the end of the night, he took a lap around his room to test out his legs. He did great and I think tomorrow he will be walking around the CV-ICU and getting more exercise and getting some more of his strength back.
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