I thought I knew a bit about HLHS before Daniel was born, but since July 14, I have discovered there is much, much more to the story.
Life in the PICU is fascinating– all the numbers involved in Daniel’s care, all the different levels of doctors and nurses. I have become quite well-versed in the terminology; so much so that I find it difficult to answer the question I get from everyone, “How is Daniel doing?”
I find this question difficult to answer because I am never sure how detailed to get. I usually just default and say, “Good!” But there is always a trove of information informing this answer. With this post, I am going to attempt to explain some of it.
Let’s first break down the PICU. The PICU is the Pediatric Intensive Care Unit. This is different than the Neonatal Intensive Care Unit, or NICU. During Daniel’s first 6 days of life, he was in the NICU. Babies go to the PICU after surgery and stay there for their recovery. After Daniel’s PA bands surgery on July 20th, he was moved to the PICU. The PICU has a 1 to 1 nurse ratio, so Daniel has his own nurse watching his every move.
Within the PICU, there is a wing reserved for babies with complex congenital heart defects. All children with CHD and/or those recovering from heart surgery stay in this section of the PICU. Daniel is in the CHD section of the PICU.
There are several teams of doctors watching over Daniel. There are the surgeons, cardiologists, and PICU doctors. The cardiologists do frequent echocardiograms on Daniel where they look at his heart and lung function. They inform the surgeons of how Daniel’s heart looks. The surgeons are in charge of the “big picture” of Daniel’s care. They tell the team when they think Daniel will have surgery and the goals of Daniel’s care, like how much oxygen they want in Daniel’s blood, etc. The PICU team is in charge of all the tiny details of implementing the surgeons’ vision– they know how many ml of fluid he gets per hour (how much antibiotics, how much breastmilk, how much IV nutrition, etc.). When Daniel has apnea episodes, when any of the “numbers” drop, when he is in distress, the PICU team is the one who intervenes and comes up with a plan.
The PICU team is huge– there is a resident (a doctor who has graduated from medical school and is completing his specialty training in emergency and critical care). There are usually 2 or 3 fellows (doctors who have graduated medical school and have completed their residency and are completing an extra level of specialized care for PICU babies). Of the 2 or 3 fellows, one of them is a pediatric cardiology fellow and one is a pediatric critical care fellow. There is also an attending physician (the doctor who has completed residency and a fellowship and is on staff at the hospital). There is also a respiratory therapist, a pharmacist, and a nutritionist on the team. That makes, in all, between 8 and 10 people on the PICU team in charge of every little detail.
Each morning beginning by 7:30 a.m., all three teams (PICU, surgeons, cardiologists) discuss each patient in the Cardiovascular section of the PICU. They usually meet in the hallway outside of the PICU. They all come up with a plan of action for the day for each patient. Then the PICU team makes rounds, usually beginning by 9 a.m. This is when I actually see the members of the PICU team. They go room to room with computers reviewing each detail for the day. I am invited to listen and participate in rounds. I try to be here for rounds each day because I can keep track of Daniel’s care.
Even though Daniel is in such amazing and qualified hands, I am the one who is here with Daniel day in and day out, and I feel responsible for making sure there is consistency and continuity in Daniel’s care. When the nurse isn’t sure how often to do blood gasses, I can tell her every six hours. When the doctor isn’t sure if Daniel is still on TPN or if he is doing bottle feeds, I can explain that he is still getting TPN and getting breastmilk through his NG tube. I try to be Daniel’s advocate while still respecting the doctors and nurses. Everyone is amazing about explaining anything I ask them. They are all so patient with my ignorance.
Breaking Down the Numbers
Daniel is hooked up to tons of tubes and machines.
This huge tower holds all of Daniel’s medicines. The most important medicine is the PGE (prostaglandins) that keep his PDA (patent ductus arteriosis) open. If this hole closes, he dies. So Daniel has to be on a constant PGE drip. This medicine can cause periods of apnea (when Daniel doesn’t breathe), so that is why Daniel is now on caffeine. Basically PGE is a necessary evil.
When I hold Daniel, it is no easy feat. It is a huge effort to get all of the tubes over in one piece. One of his lines is an arterial line. If this IV were to come out, he could possibly bleed to death, so it is a huge deal to move him and hold him.
Do you see all the lines coming off of him? All of these are extremely important for Daniel, but they make holding him and moving him a bit difficult. It is so worth it, though.
Daniel is awake so much more often now. He demands to be held any time he hears my voice and knows I am in the room. I am here alone in Houston, now. While I cherish holding him and I love the strong bond we have, I have no idea how I am ever going to leave him to go sleep. I am looking forward to the day we get to go home, and I can be with him every moment.
The green number at the top that says 169 is his heart rate.
The blue number beneath the green number that says 80 is his SpO2, which is his oxygen saturation. The surgeons want Daniel’s SpO2 to be between 75-85%. A heart healthy baby would have these numbers close to 100, but it would be a bad thing if Daniel’s were that high right now because it would mean that not enough oxygenated blood is getting to his organs and extremities.
The SpO2 number is actually only part of the story. This number is measured from the skin. The number the doctors are more concerned with his his PO2, which is measured in the blood. The doctors take his “blood gasses” by taking some blood out of his arterial line every few hours. The PO2 number gives a more accurate view of his blood oxygenation. They want his PO2 numbers to be between 30-35.
So, let’s say Daniel’s SpO2 number says 92 on the screen. That number, at first place, seems too high. The nurse would then draw his blood gasses, and check his PO2 number, which usually stays between 30-35. That way she would know that, in reality, he is right where he needs to be, despite the high SpO2 reading.
The red numbers that say 60/32 with a 47 in parentheses is his arterial blood pressure. This blood pressure is measured through his arterial line in his wrist. The 71/57 in big numbers at the bottom of the screen is his blood pressure measured from the cuff on his leg.
The white number 32 shows Daniel’s respirations per minute. This is how quickly Daniel breathes. They like his numbers to stay between 20 and 40. Before Daniel had his pulmonary bands surgery, he was breathing really fast, over 80 breaths per minute. This is called tachypnea, or abnormally fast breathing.
There have been a couple of times since his surgery when Daniel has been had tachypnea, but the doctors have said– fast breathing is different than hard breathing. They frequently look for signs of respiratory distress, which is nostril flaring and tummy breathing/hard breathing. On Sunday, Daniel was breathing faster than normal, around 70 breaths per minute. Because of his fast breathing, they did a bunch of tests. They looked at his PO2 number, which was 34 at the time and right where they wanted it. They looked at his chest X-ray, and there wasn’t any fluid in his lungs, which would cause respiratory distress. They looked at his recent echo, and his heart function was great. So, they determined he must just be…wait for it…breathing fast. For a second, though, it was scary because fast breathing could be signs of any number of scary complications.
Dr. Salazar says the most important numbers are his NIRS, shown below.
The top number, 67, measures his cranial oxygen profusion, or the amount of oxygenated blood getting to his brain (or something like that).
The bottom number, 74, measures his renal oxygen profusion, or the amount of oxygenated blood getting to his kidneys.
Both numbers are very important. For Daniel, because of his heart defect, there are risks that his blood isn’t getting to his body because he doesn’t have the left ventricle, or the pumping chamber that sends blood to the body. These two numbers show the doctors that Daniel’s blood is getting where it needs to go. If his renal number falls and is critical, he would be at risk of infections in his other organs. If his cranial number falls, that would mean oxygenated blood isn’t getting to the head.
Before Daniel’s PA bands surgery, these two numbers were below 40. Blood wasn’t getting to the rest of his body because too much blood was going to his lungs. They put bands around his pulmonary artery to restrict the blood flow to the lungs, forcing the blood to go through his PDA to the rest of his body. I am so thankful for the surgeons’ foresight, experience, education, and instinct. If they hadn’t acted, Daniel would’ve gone into heart failure, his lungs would have been possibly permanently damaged, and he may have gotten an infection from lack of blood flow.
Surgeons did the PA bands surgery instead of the Norwood because Daniel was premature. If he had been full term, they probably would have gone ahead for heart surgery, but since he was born at 34 weeks 6 days, they wanted to give him time to bulk up and mature before such a huge operation. Surgeons say Daniel will probably have surgery 2-3 weeks from today. There is no reason to rush it if he is doing so well. They want to give him a chance to get as strong as possible before open heart surgery. The stronger he is going in, the better and easier his recovery will be.
So far, Daniel is great. He is being fed breastmilk through an NG tube. When Daniel bottle feeds, it takes a lot of oxygen and energy. Until Daniel has the Norwood surgery, he probably won’t do most of his feeding from a bottle. He is gaining weight each day.
His personality is really starting to show. He absolutely hates the nurses and doctors touching him, but he craves snuggling and cuddling. When he hears my voice, he whimpers and cries until I pick him up. I read books to him when I can’t hold him, and I play music through my bluetooth speaker. Every day he gets stronger and bigger. I love and cherish this time with him.