Day 241 - Screaming Bloody Murder

Saturday, August 28th, 2021

Woke up to James kicking off his IV. He ripped it right off his foot. The nurse wanted to get the IV team but Mom reassured her he didn't actually need the line.

Today was the worst day for James so far in 8 months. Completely inconsolable. Sedation meds either not helping at all or only for very short periods of time. We tried Tylenol x2 and Morphine. 

We are thinking it is either GI related, withdrawal or teething... 🤷🏻‍♀️🤷🏻‍♂️🤷🏼🤷‍♂️ All guessing here. No one knows. The on-call Doctor was in the room with us watching him and was just as puzzled as us as to what was causing him so much pain. We are definitely not clamping his G-tube today.

So we started trying everything all at once...

• Took him off the LTV and put him back on the Servo ventilator (we did see a response from this for a brief moment)
• Increased his PEEP to 12
• Increased his clonidine dosage, instead of weaning
• Gave him an Albuterol treatment
• Stopped his feeds

Honestly, he just kept screaming bloody murder even when holding him. 😭😭😭

James' sputum culture came back positive for a bacteria called...

Klebsiella [kleb−see−ell−uh] is a type of Gram-negative bacteria that can cause different types of healthcare-associated infections, including pneumonia, bloodstream infections, wound or surgical site infections, and meningitis. Increasingly, Klebsiella bacteria have developed antimicrobial resistance, most recently to the class of antibiotics known as carbapenems. In healthcare settings, Klebsiella infections commonly occur among sick patients who are receiving treatment for other conditions. Patients whose care requires devices like ventilators (breathing machines) or intravenous (vein) catheters, and patients who are taking long courses of certain antibiotics are most at risk for Klebsiella infections.

For this infection he is getting 2 antibiotics, tobramycin nebulizer treatment and bactrim through his GJ.

Ended up getting him an IV to get meds to him quicker. Finally a one and done IV stick! It helps to request certain people! Then ended up giving him an Ativan. 

On a side note it's been a little frustrating to hear comments from Hospital staff like, "yeah you think you're all confident and ready to go home and then you realize that there's a lot that you're not prepared for". But in actuality we were very prepared and handled everything appropriately! We confirmed with several Doctors that we did what we were supposed to do AND we made the right decision to call 911. The only thing we could not do is give him sedation medication, which is what they gave him here in the hospital.

Comments like that are so unnecessary to say to new Trach Parents who already have high anxiety. Yes, we have confidence in our abilities with a healthy sense of fear. (Especially seeing so many mistakes made in the hospital on almost a daily basis). 🤦🤯

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭