The Big 3!

Cael & Daddy right after the breathing tube came out!

Cael playing with his rings!

Falling asleep with his WubbaNub.

Happy & sleeping with his WubbaNub!

Cael falling asleep during his echocardiogram. Manu is always so gentle & Cael likes him, so he cooperates!

Smiley baby. 6.15.12

Mommy told Caelin it was Auntie Sammy's birthday and asked him to smile for her. So sweet. 

Today Caelin is 3 months old! We were really hoping that he would have been home by now but unfortunately Cael’s body has not allowed that to happen yet. So we celebrate his 3 month birthday and his significant progress in the hospital!

Here is how the last few days went for Caelin:

Tuesday morning Cael was still unresponsive to sound, touch, and sight. His mouth was moving awkwardly and often while his eyes rolled in the back of his head. We were concerned with this behavior, as we had never seen Cael like this. Sure, there had been times where his eyes rolled back as he was falling asleep, but this was much more pronounced and his eyelids remained completely open. Dr. Stock, the intensivist, decided to order a head ultrasound and an EEG to monitor his brain. She suspected he was alright but wanted to be sure. Although the EEG is an annoyance, Mommy and Daddy wanted some reassurance that Cael’s brain was not damaged. Finally around 4:30PM he started to wake up and assess his surroundings. He really woke up closer to 6:30PM when he became more happy, alert, and interactive. We were elated to see him coming back to us- the past 24 hours with his lack of response were frightening. We loved his company but started becoming concerned when he was awake for 5 hours straight, then 6, then 7, all the way to 24 hours. The only rest he had was with 2 20 minute naps. Then, late Tuesday night/early Wednesday morning, Cael started throwing up frequently. Neither we, nor the nurses could figure out what was going on because it was not directly related to anything. Whereas before, he would throw up because he was coughing up phlegm, having reflux, or reacting to the medication being pushed in too fast. But after a few emesis, we started seeing other signs: Dilated pupils, jitters, fever, fast breathing, increased heart rate, & high pressures. At this point we knew it was withdrawal.

With the overdose of Clonidine on Monday, they stopped all of his sedation completely (Morphine, Versad, Fentanyl, Methadone, Valium). Monday evening they restarted the Morphine drip at only 0.03 but this is a miniscule dose compared to the amount of pain killers he had received the past week. Tuesday during rounds, they chose to keep him off the medications because the Clonidine was still in his system and he was still unresponsive. Although it seemed like the right decision at the time, once his body woke up it realized it was missing a lot of medication and had an immediate response. The night-shift intensivist restarted the medications very early Wednesday morning but the medications had some catching up to do with Cael’s withdrawing body. So all day Wednesday Cael experienced severe withdrawal. This physically prevented his body from resting. There were several times where he closed his eyes but his body would not let him fall asleep. Finally around 7:00 PM Wednesday evening Cael fell asleep. He slept for most of the night until 4:00 AM when he woke up vomiting and with a poopy diaper. Since then, he has been working toward a more balanced schedule of being awake and asleep.

It was decided on Wednesday that GI would replace Caelin’s clogged J tube the next day (Thursday) so they could restart feeds soon. They contemplated doing the surgery bedside or in the OR and ultimately decided it would be easier and quicker to do it bedside. So the GI doctor and nurses and the cardiac anesthesiologist appeared just before 9:00 AM to begin the procedure. At 9:20 AM they were done and we were back in the room to our little guy fighting off the anesthesia. Not even ten minutes later, Dr. Stock came in to check on him and saw him wide awake, alert, and interactive. With this, she decided it was time to extubate. So at 11:30 AM Cael was taken off the ventilator. He was working to breathe a little when he came off the vent. As a result, he was put onto VapoTherm at 7 liters of flow at 28% oxygen. When we came back to the room at 11:45 AM he was wide awake, sitting up with support of Vicki, his nurse, and smiling. Within just a couple of hours he was back to sucking on his binky, playing with his toys, smiling with Mommy and Daddy, and working on getting his voice back. He is on a steroid to help with the swelling of his throat, which should also help with the return of his voice.

Over night he did have a few issues where his oxygen saturation was between 68 and 74; the doctors do not want him below 75. Because of these issues, the nurse increased his oxygen support to 35%. But we are not too concerned because his body still needs to recover from all the stress it has been under the past few weeks.

This morning the doctors discussed the plan for today: He is getting restarted on continuous feeds at 3 mL/hr. They are weaning the Morphine drip and it is now at .02. They plan to wean the flow on the VapoTherm as possible; he is now down to 6 liters of flow. They do not want to wean it too fast because they do not want him pulling too much when he breathes. They are looking to stop his HEParin drip and go back to aspirin and Lovenox. Also, they are continuing to trend his B type natriuretic peptide level. Elevated levels of this B-type natriuretic peptide can indicate congestive heart failure. His level on Tuesday was 288, Wednesday 220, and today 600. We are not sure how to interpret this because the doctors want to wait until they have more levels to compare a trend- hopefully he is not diagnosed with congestive heart failure. He did get an echocardiogram this morning. The cardiologist, Dr. Stapleton, was concerned with the blood pressures taken this morning. The upper blood pressures were approximately 15 points higher (systolic) than his lowers. But upon initial review of the echo, Cael’s arch still looks excellent and gradient free. His function looks normal, too. So Dr. Stapleton is going to look at it in more detail to see if he can find an explanation for the differences in pressures.

We are so thankful for all of the prayers that are being said for our little guy all over the world. He is getting more love and support than we ever imagined & we know he can feel it. He is determined to get better and we know he will soon. Our powerful warrior is continuing to make miracles happen!