Subtle Changes, Big Difference

Likes to relax with his hand behind his head.

"Northern Lights" from Reaganne

Cute pins from Reaganne!

Wubbanub from Kelsey! (Waiting to take it out of the package until Cael is extubated)

Feelin' good from the Morphine and Versad. lol

No chest tube! :)

Wide awake after getting his chest tube removed. 6.9.12

Holding Mommy's finger after an episode of agitation. 6.9.12

Since Friday morning the doctors have made a few adjustments which have helped Caelin to be more comfortable and have enabled him to be well-rested. 

Friday they took out his Foley catheter so it is back to diaper changes. They also started feeding him formula through his J tube at a whopping rate of 2 mL/hr! Woo hoo! Saturday they increased his rate to 4mL/hr and restarted his GI meds- Zantac, Prevacid & Reglan. He tolerated that rate, so today they increased him to 6mL/hr. He has not pooped yet but he has been gassy so hopefully he will poop soon. He has had a lot of sedation this past week so his motility has most likely slowed down and it may take a little longer to get things moving.  

Saturday a PA, Katie, took out his chest tube. They gave him some extra Morphine and Versad for this and although he was awake the whole time, he seemed pretty comfortable and was cooperative. He was awake for a couple hours afterward, too- we know he felt relief as soon as it came out. They also changed his pain meds to Valium and Methadone to start weaning him off the Versad and Morphine but he is still allowed to get PRNs of Versad and Morphine if he needs them. Hopefully the Morphine drip will be turned off tomorrow.

His blood pressures have been lower but they increased his NiPRIDE to 4.5 MCG/Kg/Min (the highest is 5). This drug is not meant to be used long-term so Dr. Miller, the cardiologist, plans to transition him from NiPRIDE back to Enalipril. He is also still on Milrinone tat 1 MCG/Kg/Min to help his heart squeeze better. He is scheduled to get another echocardiogram tomorrow and hopefully the function will look the same, if not slightly better. *Prayers*

Since Cael came out of surgery intubated, he has had some major agitation events. Like we wrote earlier this week, he turns the color of a blueberry. But the past two days he has turned more the color of a blackberry- it is terrifying to see him this way! When he does this, several nurses offer their help to get extra Morphine, Fentanyl, and/or Versad because these medications are the only things that can get him to calm down... he cannot self-correct & our attempts at consoling him have no affect. This morning the chest X-ray revealed the breathing tube was malpositioned. This irritated Mommy because since his first freak out in the beginning of the week, Mommy asked several times if the tube was positioned correctly. Her and Daddy thought it could have been in a bad place because the past two times Caelin was intubated, he never got uncontrollably upset, had purple spells, and was unable to self-correct. This time around, whenever he was repositioned, got CPT, was suctioned, or startled he would freak out, not be able to breathe, and turn purple. With the X-ray as evidence, the respiratory therapist pulled the tube back a little so it wasn't so deep and repositioned it. Cael has been a pretty happy guy ever since she did this- he has slept for hours and only had one event when suctioned. This event was pretty bad and did require Fentanyl and Versad to help him recover and go back to sleep. His upper left lobe did look better on his X-ray this morning so hopefully he will get extubated tomorrow, if not Tuesday. We hate the vent because we know how much he hates it, so the sooner he can come off, the better. 

Cael's day nurse this weekend has been Reaganne and she is wonderful! We first met her a few weeks ago; she was the first nurse to help prepare us for going home (ideas about supplies we will need and such). Saturday she brought Cael two little pins that reminded her of him. One says "Tough" and has a picture of a cookie. The other says, "Wiggle" and has a picture of a worm. Super cute! She also brought us some of her fresh homemade corn salsa to try along with some tortilla chips and it was scrumptious! Then this morning she brought a present for Mommy! Reaganne's mom makes gorgeous hand-crafted custom jewelry and Mommy had admired her work on Pinterest. So after our conversations and doing a little research on Mommy, she asked her mom to make a wrap bracelet specially for Mommy. The bracelet's name is "Northern Lights" and it is perfect! Mommy absolutely loves it and cannot wait to show it off everywhere she goes! If you would like to check out more of her work you can check out her Facebook page: C-Shaw Designs

The nurses and techs here are just absolutely amazing. Not only do they take wonderful care of our son and keep Mommy and Daddy company, they are patient and offer advice, support, love, and more.  Nurses text each other asking about Cael when they are not working. A nurse, Devra, made a donation during the Telethon in Cael's name. Misty, a tech, gave Mommy resources to use while on her milk and soy-free diet, brought her soy/milk-free chocolate chip cookies, and taught her how to crochet (still a work in progress). These are only a few of the magnificent gestures from the staff at All Children's. Their gratuitous thoughts, prayers, and actions extend past their 12 hour shift and for that we are astounded, thankful, and so blessed. They truly are like family to us and we cannot imagine Cael being treated at any other hospital.