Surgery Day / Day 1 CV-ICU

Pre surgery family selfie

We got to the hospital at about 6:30 this morning. Nicholas was acting very brave, like he always does. They took him back to the OR prep room, which is a huge open space with like 15 beds just separated by curtains lining all four walls of the room. We updated his medical history with one nurse, then the cardiac team started filtering in. His nurse anesthesiologist was very nice and she verified that his blood work came back normal, no infection with the lingering cough. 

The team took him back pretty quickly; we walked with him to the door and then he was out of our sight. I was feeling mostly nervous and still a little unsure that we just did the right thing. It is not any easier than it was the first time we did this over 6 years ago. Those first three surgeries were so stressful and we didn't really have any time to heal our emotions between them. But this time around we have had 5 years of "normalcy". Nicholas is also older and capable of figuring some of the things out, like the silly juice is not to make him silly but to prepare him to get IV's and then anesthesia for a heart cath, or in this case, cardiothoracic surgery. He has also asked questions like, "will I be dead when they open me up?" and "how do they cut through my skin and bones?". Those have been really hard.  

LPCH is really centered around making the families of the kids having procedures feel included in making decisions and let the families know what's going on behind the scenes. We had a case worker walk us to the all too familiar waiting room and we settled in for the next few hours. Lorenzo stayed with me for about an hour, then he left to grab our suitcases from the hotel since we left before 6 a.m. and didn't want the hassle of loading up the car. I stayed in the waiting room and a nurse called me twice to let me know that things were going well in the OR. I have to admit that I was afraid to update anyone until I knew our boy was safely out of the OR and on the road to recovery. 

Dr. Hanley came down to talk to us around 12:30. Every time I talk to him I feel an amazing sense of peace and calm. I had to ask him (again) if we were doing the right thing here, this 4th surgery. He said there really is not a "right" answer, but that making his left ventricle his systemic chamber when we do the double switch should provide Nicholas a brighter future than if his right ventricle gives up and starts to fail. He also added that if Nick's LV is "trained" in the future, we don't have to do the double switch right away, but having a strong left ventricle in the event that we want to proceed with the DS is better than a failing right ventricle and an untrained left ventricle. He added that the 3rd band was still in the same position as when it was placed almost 5 years ago and that it made the pulmonary artery "hour glass shaped" and looked really good. He explained that the inner layer of our vessels have ripples, which helps the blood as it squeezes through the arteries and veins. He speculates that Nick's inner layer of his pulmonary artery "remodeled" and smoothed out, which resulted in the physiologic result of decreasing the amount of pressure needed from the left ventricle to get the blood out to the lungs (because the inner layer got smoother).

Sleeping soundly

Nicholas has always had blood pressure on the lower side of normal. Dr. Hanley said that the gradient between the pulmonary artery and the left ventricle was around 40mmHg. In order for the left ventricle to take over systemic function, the gradient would need to be around 90mmHg and 100mmHg would be even better. In the operating room, Dr. Hanley was able to tighten the pulmonary artery band to about 100mmHg. He said Nicholas's LV was able to tolerate that load and that the next 24-48 hours will let him know if the LV is keeping up with the job that has been asked of it from the band tightening. He added that the ASD (the small hole between the upper chambers) has been passing (shunting) oxygenated blood to the unoxygenated side, but with the added pressure to the left ventricle, the blood started shunting deoxygenated blood to the oxygenated side. This is not that big of a deal, except that when Nicholas is very active or worked up and his blood pressure rises he might get a little bluish in color. 

We have a private parent's sleeping room tonight, not sure about tomorrow, but we'll take it one day at a time. I will most likely stay with Nicholas all night in his room anyway. 

A little tear escaped his eye

We have been with Nicholas since about 3:00 p.m. and so far everything has been holding steady, for the most part. The cough that was lingering has reared it's ugly head a few times while we have been here with him, and twice he has coughed so badly that all the alarms on the respirator were chiming and he vomited because he was gagging on the tube while trying to cough. Thankfully the suction is right near his head and we were ready to suck it out of his mouth. His eyes looked at us like he was suffocating and that was a bit scary. Twice. The coughing fits made one of the attending doctors suggest that they more heavily sedate him so he doesn't get worked up again if he coughs, but she wanted to give him Versed and I worried that because it is in the same family as Ativan, Nicholas would have the same type of scary hallucinations like he did once before. So we were able to calm him down with music and holding his hand and he slept soundly for a few more hours. After a third coughing attack, the nurse gave him more morphine and he has been asleep for about an hour now.

The plan for the night is to keep him comfortable and calm. He will stay sedated at least until tomorrow when they can do an echo and check the pressures to make sure that the gradient has stayed relatively the same and to make sure the left ventricle is handling the load and not showing signs of stress. 

Nicholas is seriously my very own Hero.