Cath Lab, Heart Failure, & ECMO

As many of you know, over the weekend Caelin’s heart function digressed. He was a very happy boy and we had lots of fun together taking pictures, cuddling, talking, reading books, listening to music and everything else! We had a fun photo shoot of him during tummy time on his jungle themed Boppy! Monday morning he was still a happy boy. Mommy and Daddy got lots of smiles before he was scheduled to go back to the cath lab for his procedure. Over night we noticed his heart rate slightly dropping to the low 100s along with his blood pressure. Daddy expressed his concerns to the doctors during rounds in the morning but they said they were not as concerned as they would be if they were too high. Their reasoning was if the heart was under stress they would be higher. We respect that; however, we thought it they were too low, it could be an indication it is failing. But apparently they did not feel the same way.

Bath Time!

Tummy Time!

Sleepy time- Getting ready for a nap before the Cath lab on Monday.

Caelin went back to the cath lab at 2:00 PM on Monday, May 21^st for the ballooning of his Aorta. Mommy and Daddy gave Caelin “See you later” hugs and kisses and he was rolled back to the cath lab. As he was going back, he blankly stared at Mommy and Daddy with his pale face and this gave us both a concerned feeling.

Around 4:00 PM Dr. Stapleton, the cath lab cardiac doctor, came into Cael’s room (where Mommy and Daddy were waiting) to tell them the procedure was successful. He explained that he ballooned Cael’s Aorta and a 25mm pressure gradient went down to a 2 mm pressure gradient. Although it was not perfect, Dr. Stapleton was pleased with the results. We thanked him and he left. About 10-15 minutes later Dr. Wilmot came into the room to give us an update. Dr. Wilmot is the cardiac doctor who was on the floor all last week monitoring Cael’s heart. He stayed in the cath lab during the procedure and reiterated what Dr. Stapleton told us. He also told us that they had just extubated Cael from the ventilator and he seemed to be doing well. We thanked him, also, and he left. Right after this conversation the nurse received a call asking if there was a ventilator set up in Cael’s room because he had to be re-intubated as his body became unstable and his lungs were not breathing as well as they needed to. At the time, we attributed this to the anesthesia they used. So the respiratory therapist came in to set up the vent. As she was setting it up, Mommy was standing by the door looking out in anticipation for her baby to come. The next thing she noticed was Dr. Pettigrew (the intensivist) and Jennifer (the respiratory therapist who went to Walled Lake Western) briskly walking with concerned expressions. They ignored Mommy as they past. They continued to pass room 16, and 17, and 18, and 19… at this point Mommy realized there was an emergency and it was NOT in a patient’s room. She knew something was wrong with her baby. She asked the nurse why they were not back yet but she didn’t know. She started panicking and Daddy made her sit down while he asked the nurse to call. She did and informed him there had been an emergency. Mommy could not stand sitting while Daddy walked out of the room to find the nurse, so she followed after him. As soon as she saw the nurse’s eyes, she knew her fear was confirmed. Mommy and Daddy held each other while waiting for news from the doctors. After what seemed like hours but was only minutes, Dr. Pettigrew came to update us. Caelin’s heart had failed and they were performing CPR. They were waiting for the surgical team to arrive to put him on ECMO if his body continued to make no progress with CPR. ECMO is a machine that pumps blood and air through the body, providing all of the respiratory and cardiac function- it is a form of life support. The surgical team was initially there for the cath procedure but they had been given clearance to leave because Cael made it through what is historically and statistically the difficult part of the procedure. So they all had to come back, scrub, and prep once they were notified. Just after 5:00 PM Dr. Wilmot, Dr. Pettigrew, and Dr. Stapleton all came out to speak with Mommy and Daddy. They explained what happened, why it was unexpected, and what was being done to save Cael- the surgical team was putting him on ECMO. Without ECMO, our son would have died in the cath lab as CPR failed to resuscitate him. They did not know what caused him to crash at this point, and unfortunately they will never know. Their best theory is his body and heart just had nothing left and his heart could no longer squeeze. After they left, we started moving all of Cael’s belongings from room 515 to 509, a bigger room that enables the placement of ECMO and an EEG monitor. At this point, Mommy and Daddy are hysterical. Staff from all over came to help us transfer everything and offer support. Caelin has many people here at All Children’s who love him and who were devastated with this news especially because less than a week earlier he was supposed to be on his way to discharge. Daddy called a friend from work to ask for help with letting the dogs out. She agreed without hesitation and immediately headed to the hospital to grab the house key and gate remote- thank you Ms. Pepper!

Of course while Daddy was out giving her the key, Cael arrived in the room attached to the ECMO machine surrounded by the surgical staff and four doctors. He was pale, cold, stiff, and motionless…. Words cannot describe the anguish Mommy and Daddy felt while setting our eyes upon our son for the first time after his heart failed. We let the doctors and staff do mostly everything they needed to do to get Cael settled- hooking up to monitors, hanging his medications, placing the EEG wires and monitor, positioning the ventilator, etc. Then Mommy and Daddy gave Caelin kisses and talked to him. We knew once he heard our voices, he would want to push to continue this fight. Initially his EEG showed very little brain activity but two brain ultrasounds were clear of structural damage and clear of bleeding. Because he received CPR for almost an hour, the doctors fear he endured some brain damage. They are unsure of the extent of damage but believe at least some is likely.

Daddy with Cael attached to all the machines.

The cannulas coming out of the right side of his neck are attached to the ECMO machine- those are circulating the blood through his body & keeping him alive. EEG wires on the brain. Ventilator in mouth coming out the left side.

From left to right: ECMO, EEG computer, medications and monitors.

Being his first night on ECMO and having just experienced cardiac arrest, he had a surprisingly stable night. Although it was better than the doctors predicted, it was still distressing and emotional for Mommy and Daddy; however, we woke up to Caelin moving. He was not moving a lot but enough to give us hope. Daddy had to run home to let out the dogs. While Daddy was out, Mommy stayed right by Cael’s bed talking and singing to him. After only a little while of hearing Mommy’s voice, Caelin began sucking on his ventilator tube. He did this after his Norwood procedure and after his shunt clotted- in Mommy’s eyes, this is the way Cael communicates to Mommy… to reassure her that he is doing okay, is comfortable, and is working toward recovery. Of course Mommy started crying tears of hope and joy and immediately sent this text message to Daddy, “He’s sucking on his tubie!” Daddy replied, “Awesome! That’s our little man. Always finding comfort in the most pressing of times. Letting us know he will be okay. And he isn’t going anywhere!” Before Mommy could even suggest it, Daddy made it clear that he felt Cael was communicating to us- we were experiencing the same thoughts and emotions.

Not much changed on Tuesday. Cael remained on 100% support on a flow of 200 milliliters per minute because the echocardiogram revealed his heart was not squeezing nearly enough. They kept his body temperature cold (33-35 degrees Celcius) put him on more medications to keep him comfortable, attached an artificial kidney to the machine to pull out excess fluid from Cael’s body (as he was experiencing a great amount of edema and could not be repositioned because of the cannulas in his neck), and extracted some blood volume from his body because his heart had too much in it. The plans were to leave his body alone, keep it comfortable, and prevent it from working more than it needed to help it recover from shock. The best thing about Tuesday is Sheri, Keetha, and Cassie arrived. It was so inexpressibly wonderful to have their physical presence amongst us during this pressing time. Also, I decided to check Facebook before I went to bed and I became emotional and overwhelmed with the posts and status updates asking for prayers and sending prayers to our Caelin. I could have never imagined the number of gratuitous updates, posts, tags and responses that I saw that were passing on our son's story… everywhere I looked was a message about Cael! Whether we are close, acquainted, or complete strangers, people were praying. And we thank you, from the bottom of our hearts. The appreciation Sean and I feel for everyone's positive energy and prayers going to our son is infinite and indescribable. Caelin is THE most blessed baby on Earth to have so many who love him and follow his journey. All three of us are so blessed.

Tuesday night was a little easier on Mommy and Daddy but we still slept very lighly. When we awoke, Caelin was moving even more. The night nurse actually had to strap down his arms over night because he was moving them too much and putting them close to his face. The left side of his head had his ventilator tube coming out of his mouth while the right side of his body had the cannulas sutured into his neck. If his fingers got hooked around one of these tubes, the outcome could have been detrimental. When Mommy said, “Good morning Caelin,” Cael opened his eyes. It was remarkable! Mommy’s heart fluttered as tears began streaming down her cheeks. Daddy came out and got a similar response out of Cael, too. Here, we hoped and prayed he would continue to show great signs like these. Since Monday evening, his EEG had started showing a little more activity, too! The activity is still somewhat depressed, but it has improved and still has the ability to continue to improve… prayers, strength, and hope!

With all of these positive signs, the nurses and doctors were pleased, impressed, and hopeful. They discussed weaning him off ECMO to see how he does, but first they wanted a repeat echocardiogram of his heart to see if the function improved. Around 1:00 PM they did the echo and it showed Cael’s heart had stronger function. With this, they decided to begin weaning the machine. In preparation, they gave him 60mL of blood for volume and a paralytic because he was moving LOTS and breathing on his own over the ventilator settings! …which were good things, but they did not want him to expunge too much of his energy with unnecessary movement… he often likes to overdo things to impress the nurses and doctors, after causing chaos and anxiety, of course. So the ventilator settings were increased to compensate for the loss of support of ECMO and prevent stress on Cael’s lungs. Then at 2:18 PM the ECMO cannulas were clamped off, disallowing blood flow to or from the machine. This gives the doctors a good indication of how Cael’s body would do on its own without any support. Every ten minutes for an hour they ran a blood gas to check all of Caelin’s numbers… there were no significant changes from one gas to another, which was excellent! With this, they contacted Dr. Jacobs, the surgeon. He came in, observed Cael, and discussed risks and benefits. Ultimately, they decided Cael was stable and the best thing for him would be to take him off ECMO! Mommy and Daddy were thrilled yet apprehensive at the same time. The nervousness and apprehension is attributed to Caelin’s Aorta. Although the ballooning seemed to help initially, the tissue recoiled and the pressure gradient was back to 25 millimeters. We are scared to death of history repeating itself. We strongly expressed our concerns, asked questions, and demanded answers from the doctors before going forward with taking him off ECMO. The doctors are limited to what they can tell us about the next step for Cael’s heart. It will need an intervention soon but they are not sure what is going to be best for him. They could do a temporary stent that is surgically removed during the Glen, a permanent stent that could be stretched in the cath lab every so often as he grows, or open-heart surgery to have the Ductal tissue removed. Each doctor has their own preference, experience and background knowledge which is causing disagreement between them on what is best for Cael. As time passes and Cael’s progress is monitored, we have a feeling Cael’s heart that will be the deciding factor. We just do not want them to wait too long and for him to end up in another situation like Monday. We also do not want them to plan an intervention too soon because his body is recovering from the procedure in the cath lab, plus the stress of cardiac arrest and undergoing CPR for 50 minutes.

Where is baby Cael? Under the covers to get his body all nice and warm after being taken off ECMO!

Off ECMO. On EEG & ventilator. 

Our little fighter. God bless him.

As we find out more information, we will update everyone. Hopefully a decision will be made about what route they prefer to take with Cael within the next couple of days. We are unbelievably thankful for Dr. Stapleton, Dr. Pettigrew, and all their team who worked together to keep Cael’s blood flowing through his body…without them, he would not be alive. We are extremely thankful for Dr. Jacobs and his surgical team who responded as fast as they could to get our son hooked up to ECMO... without them, our son would not be alive. We are incredibly thankful to the nurses, profusion specialists, and staff who monitored and tended to Cael while on ECMO to help find the perfect balance for his body to recover… without their attention to detail and dedication, our son may not be alive. We are exceptionally thankful for Dr. Bartlett and his staff at the University of Michigan for creating ECMO… without them, our son would not be alive. And we are especially thankful to you, Cael’s family, friends, and fans, for your prayers, support, and positivity… without you, our son would not be alive. Our son is the strongest person I have ever known- he is incredibly resilient, determined, brave, and inspiring, but he needed the support of everyone mentioned above in order to pull through this last event. So thank you everyone for your hard work, dedication, time, prayers and love for our son, the powerful warrior- Caelin Steven Clingan. We are eternally grateful.