I've talked about it before. The incredibly long, incredibly intense days that are Elijah's cardio appointments. It wasn't until I was talking to one of my closest friends that I realized what makes those days so intense. It isn't the time. Six hours really, in the long scheme of things, isn't that long. It's what exists in those six hours that makes it so exhausting. It's the worry, the anxiety, the anticipation of something going wrong that sucks the energy right out of you.
It starts with an xray. You finally get to UCLA, after battling traffic, and get your car parked (mind you it costs $11 freaking dollars to park). You make your way up the elevator and go to radiology. The nurses there recognize Elijah and are excited to see him. You enter the waiting room and wait to be called back. It doesn't take that long until they come for you. You take Elijah back and sit him on the seat and get your apron and his blanket. You try your best to hold him still, but he is not happy about any of this. They take their pictures and you are grateful that they work quickly. Once you are done with radiology, you have time to kill. So you make your way to the cafeteria and grab a snack and try to keep Elijah entertained all the while wondering if the xray showed fluid on the lungs, or if his diaphragm looks any better, or if a coil came loose.
As time gets closer, you head to the echo. Again, you wait in the waiting room to be called back. Once they come to get you, you realize that this is going to be rough. Really, really rough. You wonder if you brought enough snacks to get through the next hour. Is he going to rest peacefully? Is he going to cry hysterically? How bad will it be this time? You get to the room and begin to take his shirt off. He cries. You lay him on the table and lay next to him. You try your best to sooth him and comfort him. You realize that he isn't hurting, just angry and scared. Your heart breaks a little. You give him suckers and make shooshing noises. You sing to him. You stroke his hair. Until finally, almost an hour later, the tech is done. You wonder what the tech found. Is his arch narrowing? Has the function deteriorated? Fear starts to settle in.
You clean him up and head to the next floor to wait for the doctor. The wait in the general waiting room is not bad. They bring you back and begin to take his vitals. He cries through the weight check and absolutely hates the blood pressure monitor. He has to hold still in order to get a good reading and that is an impossible task. The machine has to repeat the squeezing over and over and over before it gets a number. And that number isn't good. So we repeat the process. Again and again and until the number gets close to what the nurse expects. The nurse hooks him up to the pulse ox machine and waits. The number fluctuates between abnormal and absurd until the nurse asks if the number it settles on is "normal". Maybe it is, maybe it isn't. We move on to the EKG, not an incredibly invasive test, but uncomfortable non the less.
They begin their work quickly, attaching probes to his upper body. Attached to each probe is a thick, heavy wire. There are about 15 of them in total. He has to stay still for a few seconds in order for the probes to do their work. You try your best to distract him from the fact that each of the probes is pulling heavily on his sensitive little skin. The nurse waits for the machine to signal that the test is done and then she very quickly detaches the probes from the wires. But she leaves the probes for you to pull off of his skin. You wait until she leaves to start taking them off because you realize that she doesn't want to hear the crying. You try to do this quickly. You watch the skin as it pulls away from the probe and the cries begin. You tell him you are sorry and that you will try to move as fast as you can. You pull each probe off and they leave behind little red marks all over his upper body. You think about that adhesive remover you have at home and know that you will need that when you get home because his chest is covered in sticky goo. That, along with the left over gel from the echo, and you know that a nice, long bath will be in order tonight.
After you get them all off, you start the job of entertaining him. He runs all over. He plays with the nurses, the door, anything that keeps him busy. Because this is when the real waiting begins. Although you have been given a room, you know from experience that you are long from seeing the doctor. That in fact the doctor probably has three people ahead of you all waiting for the him to read their echos, look at their xrays, and examine their child. Not to mention that the doctor needs to take all the information he has accumulated that day and create a plan. He is a great doctor, unlike any you have come across, and you realize that he is worth the wait, but that doesn't make the wait any easier. You wait... and wait... and worry... and worry... and think of worst case scenarios and picture how the bad news will sound. You go all the way back to when the diagnosis was given. That moment in time that you will never forget. And you look at him now, so vivacious and energetic. So normal. And you remember that this time is a gift.
After at least an hour, if not almost two, of waiting the doctor comes in. He is so incredibly kind and you remember why you come to this place. He explains things in detail and asks you for your thoughts. He makes sure you are comfortable with everything and he sits with you. And sits with you. Until he is confident that everything has been covered and that everyone, including you, is okay with what was discussed. And you may not be okay, and that is okay. You understand.
You may need to visit the pharmacy after this is done or you may not. You pay for parking and head to the car. You load up a very, very tired baby and start the trek home. You started this during the lunch hour, and are now heading home in the thick of rush hour traffic. You have at least an hour, but most likely an hour and a half drive home. You are exhausted. Mentally, physically, and emotionally done.
Dion experiences most of these days. I am so grateful to have married a man who, no matter what, loves his children and will do whatever is needed. Elijah's last doctor's appointment went well. He now weighs almost 20lbs and may even be on the growth chart. We think Elijah will have his next cath during the summer and his Fontan, open heart surgery, in the fall. I try really hard not to think about that.
