Daniel updates–CMH, round 2

I can’t believe this, but we are here again. For the last seven weeks at home, this hospital became a distant memory, remembered only in my nightmares. Now, unbelievably, we are back here for the foreseeable future.

Here’s a timeline of our last week:

1. Thursday 10/25: Mom and I travelled to Houston with Daniel for his routine cardiology appointment with Dr. Viddya Annavajjhla. He usually has weekly appointments with Dr. Pliska in Temple, but he has monthly appointments with Dr. Viddya in Houston because she is a single ventricle specialist. This was his second monthly checkup with her, his first being in September. Dr. V did an echo on his heart, and she saw a few concerning things:

2. His tricuspid valve has more regurgitation than it did before. He always had a “mild” leak. Now it is “moderate.” Look at the picture of a normal, four-chambered heart below. Remember, Daniel only has the right atrium and the right ventricle. His left side (the part in red) is completely unformed, so his blue side has to pump all his blood. A moderate leak in the valve is a huge deal.

1. His heart is enlarged, and the pumping function of his right ventricle is decreased significantly. It is expected that his heart would be enlarged. Right now, all the blood that was supposed to be pumped in a four-chambered heart is being pumped in a two chambered heart, so the right ventricle has expanded. Up until now, we thought his heart function was normal, but over the last two weeks, it has decreased significantly.

2. The biggest change is his aorta. Look at the picture below. Daniel always had a narrowing in his aorta, called a coarctation. Up to this point, it wasn’t severely narrowed, and it wasn’t causing problems. At the echo on Thursday, Dr. V saw that his coarctation was more severe. The coarctation probably contributed to his decreased heart function and tricuspid valve regurgitation.

When Dr. V presented this information to us on Thursday, I felt kicked in the gut. I knew something was not right about Daniel. In fact, the whole day previously, I had an anxiety attack. I was extremely depressed and despondent, for seemingly no reason. In reality, I knew we would end up having to stay in Houston, even before Dr. V’s news. I had actually packed my suitcase before we left to Houston on Thursday morning. We are so close to Daniel’s next surgery, and I knew that if any one little thing was concerning, we would end up having to stay. Turns out, I was right. Only it wasn’t a “little” thing. It was three pretty huge things.

Even though I had had a premonition, I was still devastated by the news. My mom felt blindsided. She didn’t see it coming. Daniel has been doing so well. In Dr. V’s words, he was “asymptomatic,” meaning he showed no signs of heart failure.

Dr. V told us the solution was to admit Daniel to the hospital. He would have a Cath lab procedure the following day (Friday 10/26). In the Cath lab, they would balloon Daniel’s aorta so that it was no longer narrowed. We knew Daniel would have to have a Cath procedure before his next surgery, the Glenn, but we were anticipating the Cath being the day before his surgery. Doctors always have to do Cath procedures before heart surgeries because they measure the pressures in the lungs and the blood flow in the blood vessels. They theoretically get the information in the echocardiograms too, but the Cath lab provides more information for the surgeons and cardiologists. It is like looking at a picture from different angles and perspectives. The Cath lab, the echocardiogram, and the actual vessels the surgeons saw during the Norwood are informing their decisions right now.

On Thursday, the rest of the day after the appointment was exhausting. We had to wait around for four hours for a room to open up. Trying to keep the gtube feedings going and  trying to limit Daniel’s contact with germs inside a hospital for four hours was incredibly taxing. When we finally got in a room that night, the nurses had to start an IV on Daniel. It took multiple attempts because Daniel has stubborn veins, and Daniel screamed for a long time. He was being poked and prodded and messed with after an extremely exhausting three hour drive and four hour long wait, and then he had to be jabbed with needles. After they got the IV in, Daniel did something called “bearing down.” “Bearing down” is when a baby gets so mad, they literally shut their body down. I was holding him in my arms trying to calm him while he was screaming, and all of a sudden he went stiff and silent. I was terrified that he was “coding,” AKA cardiac arrest. I laid him on the bed, and his face was frozen in a look of horror– eyes wide, mouth in a grimace and open, silent. His heart rate dropped from 180 to 80, and his oxygen saturation was 50, yet no alarms were going off.

I was so shaken and scared, on top of being shocked and exhausted. I sat up with him until 4 a.m. waiting for a doctor to come talk to me. At this point, technically we were in the IMU– the step down unit. Daniel didn’t technically require “PICU” status at this point. I kept telling my nurse, and no one came. Finally the PICU charge nurse came and calmed me down, and I was able to grab a couple of hours of sleep.

A few hours later, Daniel went to his Cath lab procedure. At this point, I didn’t have any idea how serious of a problem Daniel had. I didn’t realize he was in heart failure. I didn’t realize how big of a deal all of this was. In my mind, he would have the Cath, and we would get to go home Sunday until the Glenn. I was in complete denial. They stopped his feeds at 3 a.m. that morning, so by the time the Cath started at noon, Daniel was fussy and hungry. There is nothing worse than having a fussy baby who is hungry and you, who have the perfect solution to his hunger, can’t do anything to help him.

After the Cath procedure, we were told it was a success. The ballooning worked, and the heart visually improved its pumping. During the procedure, Daniel had an arrhythmia because of the work they were doing, so they shocked it and were able to get it back in rhythm.

Daniel remained intubated for the night. In the morning, they gave him a blood transfusion because his oxygen saturation numbers were still a little low, and they extubated him around 1 p.m.

At this point, Daniel hadn’t eaten 30 hours, so I was eager to start feeding him. Doctors told me that the stomach diverts the most blood away from the heart when it is having to digest, so they wouldn’t let him eat until they had a good idea what his heart function looked like. After he was extubated, Daniel slept peacefully all afternoon. Until 7 p.m.

At 7 p.m. everything fell apart, including my composure. Daniel started desatting. He was sleeping peacefully, but his oxygen saturation numbers were in the 60s. When I looked at him, his nostrils were flaring, which is a sign of respiratory distress. He was also bobbing his head, his tummy was puffing out, and he was grunting, all while completely calm. I immediately alerted the nurse, but he kept brushing me off with words like, “I have called them, but I can’t get in touch with them,” and “I will keep trying.” Finally at 9 p.m., I texted the surgeon, Dr. Salazar. Within 3 minutes, the head of the PICU, Dr. Boukas, and the fellow, Dr. Maurice, rushed in the room.

“What happened?!” he exclaimed. After explaining to him what was going on, he decided to try an IV dose of Lasix. He thought the extra blood from the transfusion overloaded his heart, and he hoped the Lasix would offload some of it. At this time, I still thought we would be going home the next day. I had no clue that Daniel was in heart failure, even when his sats started dropping.

“If the Lasix doesn’t help, then we will need to start the milrinone,” he told me. Milrinone is a drug that helps the heart contract and relax. It is also an IV drug, so Daniel can’t go home on it. I was dismayed, but at this point, I didn’t care what they had to do. All of a sudden, I realized how serious Daniel’s heart trouble was.

Around 10 p.m., an hour after his Lasix dose, Daniel started de-satting again. At this point, the PICU staff had to be shifted around, and our nurse had to go attend a different patient. Another nurse took over right around the time that I came unglued. About 30 seconds after he took over from the other nurse, I told him, “Get a doctor here now. Daniel is still desatting.”

“Okay, I will try, but they are in rounds,” he said. I completely went ballistic. I had just had to wait two hours for doctors to come, and I wasn’t about to deal with it again.

“This is an emergency. My single ventricle baby is desatting. If you don’t get a doctor here in the next five minutes, I will go find him in this unit. Then he will be here, ” I said. He left the room to try to contact a doctor, and then Daniel’s oxygen saturation dropped into the fifties. Alarms were going off everywhere, and no one was anywhere.

**At this point, let me just say that we are down a hallway from the PICU. Technically, this is “PICU overflow.” We are in a room with a bathroom and shower, which is a huge bonus, but we are away from the normal hustle and bustle of the main unit. This time we don’t have the RV here, and I can’t leave Daniel’s side. He needs me with him, so I live in his room with him. If I didn’t have a shower or bathroom, it would be much more difficult.**

So when Daniel started de-satting after I told the nurse, I ran out of the room and yelled, “My baby is de-satting again! Why is no one in here? Get someone here NOW!” As soon as I yelled this, I saw the doctors rush down the hallway toward Daniel’s room. The nurse had literally just spoken to them, and they were on the way.

Dr. Boukas put Daniel on milrinone at this point. There was no doubt about it– Daniel was in heart failure. All illusions of going home were shattered, but I didn’t care. I just wanted my baby to be okay. I was up all night with Daniel. He was starving. He hadn’t had anything to eat in over 48 hours. He was crying and miserable and desatting. It was so terrifying. l had been in the hospital for three days, and I had gotten about 7 hours total of sleep.

This incident in no way, shape, or form made me lose faith in my team here. I absolutely love Dr. Boukas. I think all nurses involved in this situation are wonderful, caring, and competent. What we had was a breakdown in communication, exacerbated by a crazy PICU weekend and my sheer exhaustion. I was almost psychotic with sleep deprivation and fear. Dr. Boukas was still at the hospital, 27 hours after beginning his weekend shift Saturday morning. I found out from another mom friend in the PICU that there had been two suicide attempts that Saturday, one a young man who shot himself in the head. My friend who told me said she had watched his body being wheeled to the operating room where they harvested his organs, his parents sobbing the whole way. The other was possibly an accident. An older boy got a gun out of a closet, his younger brother tried to grab it from him, and it went off. My point is this– I was not the only emergency case in the PICU that Saturday. I have no idea how these people do this, day in and day out. (My mom friend who is in the hospital has been here since Daniel was BORN three and half months ago with her son.)

The “great minds” (I say that completely sincerely) agreed to let Daniel breastfeed for the first time ever Sunday. They didn’t want to feed him just yet by gtube because they were still worried about his heart function, but him eating by mouth voluntarily is different. For twenty-four straight hours, Daniel breastfed every two hours. It was wonderful.

Most importantly they know Daniel well, and we are all a team to do the best thing for Daniel. Every step of the way these doctors talk to me and tell me their thoughts about the plan for Daniel. I can’t express enough how thankful I am for them. After my blow up, they were all completely professional. We even had the same nurse for two more nights after that, and he was wonderful. I think I was so tired and hysterical, I was not effectively communicating my concern to him Saturday night. He had been in touch with the doctors, but he didn’t convey that to me in a way I could understand, hence the breakdown in communication. After this, he was sure to explain the steps he took to address my concerns.

On Monday and Tuesday, Daniel was miserable all day. He was very fussy unless I was holding him. He cried almost constantly, and he stopped nursing, drinking out of a bottle, and taking a pacifier. It was unnerving. Brian worked downstairs at Starbucks, and my mom joined me that afternoon after working to finish her sales tax reports, but much of the day I was confined to the hospital room, trying to soothe and comfort my miserable baby.

(Brian is working at Starbucks in the picture above. We are so thankful for his company and his bosses, who have been so understanding during this difficult time. On Monday night, Brian went to work from home for the rest of the week. He is able to be with our children in the evening so that they have some sense of normalcy.)

Tuesday night, the final bombshell was dropped. Up until this point, I was still hoping they would let us go home for another month until the Glenn. They had started Daniel on captopril, which is an anti-hypertensive drug. The hope was they would start him on captopril, then slowly wean him off the milrinone. They were also weaning his oxygen and precedex, and the conversation during rounds had consistently been geared towards going home. Until Tuesday night.

Earlier in the day Tuesday, Daniel had had another echo. Dr. V wanted to assess his heart function with the milrinone and when he was off the ventilator. Tuesday evening she came by the hospital room and gave us the news– his heart function was not much improved, nor was it tricuspid valve regurgitation, and there was still some narrowing of the aorta. Because he is not very much improved, they cannot let him go home. We are here until the Glenn.

Thursdays are “surgical conference” days in which all the great minds discuss the cases. The cardiologists have seen Daniel’s echo and his Cath lab results. The surgeons have seen his actual beating heart when they did the Norwood. Each of these is one piece of the puzzle that give them different information. They rely on each of those pieces to make some big decisions. Tomorrow they will decide:

1. when to do the Glenn. It will probably be next week, but it could be longer. They want to do the surgery at a time when Daniel’s heart is “optimized” and in good shape, so they don’t want to wait a long time for him to get sick or weaker than he is now.

2. if they do an aortic arch reconstruction at the same time. This is a huge deal. The Glenn is supposed to be a smaller surgery than the Norwood. It is much quicker to recover, and kids usually do well. But Daniel is very young. Technically he is 3.5 months, but he was six weeks early, so he is really 2 months. The Glenn is best done on a baby who is 4-6 months old and a couple pounds heavier. Additionally, patching the aorta to correct the coarctation at the same time adds complexity and risk to the procedure. Using all the information at hand, all the great minds will decide if it is worth the risk to patch the aorta now, whether they should do it later, or if it needs patching at all.

So here we are, folks. Again. For who knows how long.

It has been six days since I’ve seen my other two babies, David and Hannah. I miss them so incredibly much. It hurts my heart to think of them.

I miss my husband. Brian and I have been apart for a week and under extreme stress. I just want to go to the movies with him, have dinner in a nice restaurant without constantly worrying about our baby, sleep next to him in our bed and NOT on this two-and-a-half foot wide hospital bench.

Pray for all of us. I am so angry that Daniel has to go through this. It is so not fair. There is so much pain in the world.

I’m scared. I’m scared he won’t come home. I’m scared he will have a stroke or incur brain damage or go into cardiac arrest. I am scared we will be here for six months and be told he isn’t a candidate for the Fontan. I know God is in control, and I know all His plans are good, but I am human, I’m a mom, and I’m scared.

I’ve made five good friends here in the PICU. Four of the five are heart moms. We talk in the Ronald McDonald House lounge and we check on each other’s kids. Most of all, we are a sisterhood of women who share the understanding of what it means to be a heart mom. We are warriors for our babies.

Finally today Daniel is doing well. He has slept most of the day, and he is on his regular g-tube feeds. He is being given Tylenol and simethicone drops regularly, which has tremendously helped his pain and stopped his fussy-ness. We have found out that it soothes him to cuddle with my shirt.

Brian is coming back up to the hospital Friday night, and my mom and I are going back home. As much as it will absolutely kill me to leave Daniel’s side, I need to see my other two precious children. I will be home with them all day Saturday, sleep with them Saturday night and take them to Sunday school and church Sunday morning, then head back to Houston. Brian will be with Daniel the whole time I am gone. Beyond that, I have no idea what the plan is.

Please pray for all of the people who will be in the surgical conference Thursday making the life and death decisions regarding Daniel’s care. Please pray for Daniel, that his heart function improves, that he continues to grow and gain weight in the upcoming week before surgery. Please pray for us as we go through this as a family.

I know this will one day be a bad dream. I know that we will be home sooner than we think. I know this is already in the past, and we will get through this. I am putting one step in front of the other and focusing on comforting my baby, breathing, eating, drinking, and sleeping. I don’t have much capacity to do anything else.

I’ll try to update when I can.