Toxic Overdose

Caelin a few hours after given the extreme overdoes of Clonidine.

This is close to how he looked for over 24 hours... at points it was worse than this.

Just got his EEG hooked up and appears awake but is not responsive to our voices.

Caelin starting to wake up in the late afternoon and playing with a toy. 6.12.12

Yesterday morning, Monday, June 11, 2012, started off as a typical monday morning. The usual visitors came in to do their weekly assessments and check in on Cael. Cael got an echocardiogram done around 10:30 AM. He tolerated it very well and gave the echo tech excellent pictures. He kept complimenting Cael on being a good boy and thanking him for allowing him to get all the shots he needed. The echo was over around 11:00AM, he got his scheduled Valium and Morphine and he passed out (or was knocked out for that matter). A little while later the COWs (Computers on Wheels), doctors, and specialists arrived. In came the herd to evaluate Cael’s physical appearance and get the scoop from the weekend. This is when Mom revealed her built up frustrations to them. To make a long story short, she was upset about Caelin’s purple spells and the lack of a plan in place to get Caelin off the ventilator. Mommy and Daddy see how the ventilator agitates Cael and how frequently this agitation causes his heart rate to drop (it has hit 64 bpm) and blood pressures to go up (they have gone into the high 140s systolic). Sometimes when he is in bed he will cough or move his head ever so slightly and it causes his heart rate to drop below 100bpm (Caelin has been normally between 120 and 150). The doctors are concerned he is not ready because he has proven to be full of surprises. Mommy and Daddy respect their clinical expertise but just want them to justify their reasons and hear our concerns. We are not doctors but we try to learn as much as we can because we believe it is of the utmost importance to be well-educated on our son and his condition. With that said, one of us is almost always at the hospital with Cael so we know what is normal for him and what is not. It is not normal for our son to be inconsolable and only relax with sedation. So we would like for them to hear our concerns, for them to be proactive in discovering why he is doing this, formulate a plan to break this vicious cycle, and explain that plan. We may be needy in their eyes, but our son is more important to us than anything and we are his voice. So needless to say, the conversation turned a bit argumentative and Mommy was brought to tears (the emotion of the past three heart-wrenching and unpredictable weeks had taken control). So Dr. Wilmot and Diane (nurse practitioner) stayed in Caelin’s room to help calm Mommy and get more details on Cael’s purple spells, as the rest of the team ventured forward to the next patient. With his heart looking somewhat large on the chest X-ray this morning, they did not think he would be able to be extubated within the next 24-48 hours so ultimately, the doctors decided to wait until the echocardiogram was read before planning to make any big changes.

Between 1 and 2 Dr. Stapleton (cardiologist) came in to discuss Caelin’s echocardiogram. He sat down in the chair next to Mommy and Daddy and said he reviewed the echo. He then looked puzzled and said he had a couple other people analyze the echo and compare it to previous echos to make sure he was reading and diagnosing it correctly. As the suspense was building, he used the “n” word… normal. Caelin’s function looked like it was back to normal (normal of his hypoplastic left heart, of course). This was not the news we were expecting at all. With this news we were surprised and jubilated! Glimmers of hope flashed before our eyes as we started thinking about what this could mean over the next couple of months… progress toward going home before he needs his Glen. Something that from the echo four days prior seemed out of reach, out of sight. After this news, Dr. Stapleton and Dr. Wilmot agreed that extubation was now a good possibility within the next 24-48 hours- amazing! When they left our room, grins could not escape our faces. In the mean time, Dr. Stock, the head doctor of the CVICU, came in to apologize for the discussion we had earlier and bringing me to tears. Mommy appreciated the apology but at the same time told her the emotions from the last three weeks have caught up to me and have been the hardest of my life… honestly, the last twelve weeks for that matter. Mommy reiterated her feelings of respect and trust toward Dr. Stock because she is brilliant, meticulous, and proactive. Mommy also explained that we know Caelin’s normal really well and all we want is what is best for him and would like to have a plan to get him safely to where he needs to be. So she left and we stood by Caelin’s bedside telling him we are so proud of him and blessed to have him as our son. A little later Mommy had to leave to do some running around and Daddy stayed with Cael.

Around 4:00 PM Sean got up to check Caelin’s diaper because his Lasix infusion had finished a few minutes prior. When he walked over to Cael’s bed he saw a pale, limp, child with his eyes wide open, unable to close. He expressed concern to the nurse and after talking they realized it could be caused by his new medication, Clonidine. Prior to giving it, the nurse was concerned with the dose being delivered in a 20mL mixture and called the pharmacy to make sure it was an appropriate dose to give Caelin, a 4 kilogram kid. The pharmacist assured Lolly, Cael’s nurse, that the dose must be mixed in that volume and it should be fine for Cael. Although still hesitant, Lolly pushed all 20mL through Caelin’s J Tube in roughly 20 minutes. This is crazy because this volume is like a bolus feed and Cael has been only getting 6mL in an hour. That’s 60 minutes. The nurse went to get Dr. Stock. Meanwhile, Dr. Stapleton was walking past Caelin’s room so Daddy asked him to come in and assess Cael. Other than his physical appearance, Caelin’s heart rate was in the low 100s and his pressures had changed, too. Initially, Dr. Stapleton said he was not concerned with the changes because the Clonidine Cael got around 3:40 PM has a calming effect. Then Cael’s heart rate dropped into the 70s and 60s. With this, the “Staff Assist” button was pressed before matters became worse. The doctors worked to give Caelin a full dose of Atripine and a half does of Narcan to help his heart and stop the effectiveness of the Clonidine. They realized he was given 2 milligrams (mg) of this medication instead of 2 micrograms (mcg). 1 mg = 1000 mcg, therefore, he received 1, 998 mcg more than what he was supposed to.

Meanwhile, Daddy called Mommy to inform her of the recent event and she lost it. She finished letting out the dogs, picked up her glasses, and headed back to the hospital as fast as she could. It is a good thing Dad was there and noticed Caelin was not himself, because this event had the potential to be worse than it is.

Dr. Wilmot came back into Caelin’s room at 7:16 PM to check on Cael’s heart, pressures, and overall appearance. He said his pressures are still high but not as high when he (Dr. Wilmot) first arrived and Caelin was wide awake and pissed. Dr. Wilmot had a half hour discussion with us about the possible effects of Clonidine but assured us they should not be long lasting (past Tuesday was his projection). He also went over what measures are being done to investigate all the facts of the overdose and what changes to the system are being made to prevent something like this from happening again. As it is our understanding, Dr. Wilmot was not directly involved in the chain of events of the overdose but he took it upon himself to investigate the steps of this event and get us answers. Although Dr. Wilmot is the head of transplant and it partially scares us that he follows Caelin so closely, we are also very thankful for his consistent focus on detail, compassion, and determination to do what is best for Caelin.

Over night, Caelin was mostly knocked out with a few instances of him waking up angry, dropping his heart rate and desaturating, then passing back out. He has been turning purple almost instantly, then going right back to pale when he passed out; there was really no in-between.

He also spiked a fever of 38.5 degrees Celsius which is 101.3 degrees Fahrenheit. This is not a high fever for a normal child, but it can be alarmingly high for someone of Cael’s condition. Although we thought it could be related to his purple agitation spells and the overdose, the doctor wanted to be safe and run cultures on all of his lines, the breathing tube, and check for a UTI. All of these cultures show no growth as of this morning but still have a couple of days to change.

This morning Caelin’s work of breathing had increased and his heart rate was still low. Because of this, they gave him more support on the ventilator to take work away from Cael.

He had several purple agitation spells throughout the day mostly caused by him waking up mad. He was a little easier to console today than he had been the past couple of days but we think part of that might be the medication.

Mommy and Daddy were very concerned in the early afternoon when Caelin was still not responding well to touch or sound. Also, his eyes kept rolling into the back of his head over to the right sight and when they were a bit forward he appeared unable to focus. With this concern, the doctors ordered a head ultrasound and an EEG to follow Cael’s brain activity. The head ultrasound looked normal according to Dr. Stock and as far as we know, the EEG has yet to be analyzed. We hope to have more information about the EEG in the morning; however, in the late afternoon/early evening, Cael woke up. He became alert and awake, responded to touch, sound, and sight. We felt a great sense of relief as we saw Caelin return to being Caelin. He actually has been awake and alert since 6:30 PM… it is now 11:59 PM and he is still fighting sleep. Perhaps he feels he has slept enough the past 36 hours.

Caelin had an echocardiogram done this morning. While the technician was doing the echo, Dr. Wilmot was in the room. After he watched the tech and directed her on what he wanted to see, he informed Mommy that the function appeared somewhat different from yesterday. He said the tricuspid valve leak could have been classified as trivial yesterday but mild today. And he rated his heart function a 46 where as yesterday it was a 52. Clearly this made Mommy upset and frustrated. But later in the evening, Dr. Stapleton came by to say he analyzed the echo more closely and compared it to yesterdays and he does not see a difference between the two. He said the reason why it initially looked worse is because his heart was beating slower today than yesterday. Today it was around 107-115 bpm while yesterday morning before the overdose it was more between 135 and 150 bpm. Hopefully they will do another echo in a couple days and his function will be “normal” and getting stronger.

Another thing that happened as a result of this event is his J Tube clogging. Nothing can be pushed into it which poses a problem for feeding. They tried using soda for the carbonation to clear it. That failed. They then used sodium bicarbonate and creon to try to break down the contents in the J tube. That failed. So now it is looking like they will have to do an endoscopy to pull out the old J tube and put in a new one so Cael can get fed. Seriously, nearly nothing comes easy for our son. He truly will have the best college essay on “How I Overcame Adversity.”

Thank you for all your prayers in this time of need. Sorry for posting so late, this post has been a work in progress. Clearly the past few days have been highly eventful and exhausting. Quite honestly, this post has not been reviewed so there may be ample spelling/grammar/technical errors so please bare with us.  

By the way, Caelin's blog has now past 10,000 views! So thank you all for supporting and following Caelin's story!