The Journey of James Weston

Saturday, July 31st, 2021 What the setup is like to hold your baby. Last night ended up giving him a glycerin and a Tylenol. At evening rounds the doctor was pretty certain that the ventilator was not irritating him but it was the gas built up in his belly. However the nurses thought he was struggling with the ventilator. Overall we're all just guessing. James seemed pretty agitated towards the end of the night last night. He did his trial from 9:00am to 9:00pm. The Tylenol was given around 9:00pm so it was hard to tell if the medication had helped or if it was putting him back on the servo. This situation repeats itself tonight.  Kind of a stressful night in fact that Mom had to get up with every single alarm, anytime James made a sound, and to make sure we stayed on top of suctioning. We think that a lot of the nurses here just figure that since Mom is here she needs the practice of being a full-time nurse so they do not jump in and assist. The thing is it will not be helpful to ...

Friday, July 30th, 2021 Rough night! James also projectile vomited at 5:30am, it took 2 hours to get him settled after that.  Today did a trial from 9:00a to 9:00p, 12 hours. Increase lactose from 5 ml twice a day to 7.5 ml twice a day, increased erythromycin from Q12 to Q8. We gave him a glycerin last night and he immediately had a bowel movement within like a minute. He was pretty irritated the majority of the day. Mom did a wipe down bath with trach care changing out his trach ties. Mom was constantly venting, suctioning, changing diapers. Mom tried to console him by holding him in the chair. It's a really huge ordeal to hold him in this PICU room, because there's very little room and also with the LTV vent we don't have a lot of ways to maneuver with moving the bed, moving the chairs around, moving the feeding pump, rearranging all the cords, getting the ambu bag ready (since last time he went lifeless) and also getting the emergency call bell in reach. We finally got i...

Thursday, July 29th 2021 James pissed Mom was gone for 4 days. So the hospital called early this morning letting us know that they ran out of milk during the continuous night feed. The nurse had not calculated correctly. They ended up supplementing with formula. 🤦‍♀️ Mom was feeling better so she ended up bringing more breastmilk to the hospital. 🍼 Right now James is on March milk. As soon as she arrived James woke up and was pretty inconsolable for 3 hours. Mom vented his G-tube with a syringe and got a ton of air out. He was coughing a lot of water and foam into the trach so Mom had suctioned several times. The RN who is one of our favorite in the PICU said that she had played with him, did his PT exercises, and sat him up in his chair. This is great because during the 3 hours that he was pretty irritated that's when our Discharge Coordinator 🧾, Social Worker 📃, Speech Therapist 👶, and OT ⛹️‍♂️ showed up. Mom had to ask them to come back at another time. Music therapy 🎵 cam...

Wednesday, July 28th, 2021 9:30am Call from Nurse: He said that overnight in the early morning James had been desating into the '80s, was calm, although his work of breathing was worse with strong retractions. He said that so far today he is still desating so they bumped him up to 40 FiO2 from 35 and he is now better. They ended up doing a nasal swab check and it came back negative for RSV, covid, and a few other viral infections. Mom let him know that sometimes when he's sleeping he drifts a little bit. Obviously going to a 40 FiO2 is not good for him going home. They might try the LTV later today if he continues to look okay. Mom ended up getting an IV drip to help speed up recovery. It was a 45 minute saline based electrolyte solution called an Immunity Booster which included B12 + Vitamin D + Taurine + Trace Elements + Glutathione + Vitamin C (x2).  2:30pm Dad went to the Hospital - text update below 🏥  "James had been on LTV since 11:30am. Doing good. No poop y...

Tuesday, July 27th, 2021 Mom hasn't been able to see James since Saturday. 😭😭😭 Her covid test did come back negative which is what we thought would happen, but she is still sick with a viral cold. We don't want James getting any worse so Mom is going to take it day by day. She is going to get IV therapy tomorrow at our local wellness center to help speed up things up. The initial $60 CVS run on Sunday was a basket full of Vitamin C, Zyrtec, Flonase, Zinc, Elderberry, and a Neti pot. Couldn't tell you what has helped! That's the way we typically like to do it, adding in so many variables that we don't know what's working. 😆 10:00am Nurse called with update:  Essentially no changes. James had a better night.  Mom checked the online portal and it says he weighs 7Kg now ( 15 pounds and 6.92 ounces) . It shows today's date at 4:30am. She doesn't know why they are insistent with being Hands-On in the middle of the night as soon as she is not there. She al...

Monday, July 26th, 2021 9:30am Nurse called this morning: Clonidine suggestion is to change to Q6 and alternate with methadone so every 3 hours James gets something to decrease frequency without changing the dosage. Starting 24 hour trial today on the LTV - started at 5am (or until James needs a break). Had a small spit up on his face but nothing major. Vented to remove gas several times. Overall pretty good. Weren't able to get enough blood from the heal stick after 2 attempts so Director said it's not needed and to not try for now. If needed later, will try IV team, but will keep us posted. Lactolose scheduled for 4am and 4pm. We can FaceTime on the iPad anytime you want too. 1:00pm Nurse called with update:  James isn't doing well. They already gave him Tylenol, they are going to give him morphine now. They are switching him back to the Servo. They tried holding him, venting him. I guess nothing is working. They think he may be sick. They tried a heel stick on nigh...