The Journey of James Weston

Sunday, June 27th, 2021 Updates/Changes: We have weaned his methadone from .2 to .15 . To offset this we have increased his clonidine. Clonidine is not an opioid and is much easier to wean so when the time comes it will be a faster process. Our doctor had the GI surgeon to stop by to take a look at the bruising on his scrotum (where he had the hernia and hydrocele surgery). He said that everything looked fine at this point. Currently there is bruising and a noticeable size difference. James has been very sleepy, but not lethargic. He would just rather sleep. Even if he sleeps for the majority of the day now, he still has a good night. This could just be due to recovering from his surgery and fractures, being more comfortable overall, or growing. After all babies do sleep a lot! James ended up throwing up towards the end of day shift. He doesn't really get a break his last bolus feed is from 4:00pm to 4:45pm and then his continuous feed starts at 6:00pm. We've noticed that after...

Saturday, June 26th, 2021 Updates/Changes: Continuous feeds were increased to 38ml/hour. Bruising on the left side of his scrotum is bruised and discolored now. Morning: Dad got to read the Lorax and get some quality time with James. Never too early to influence this little man to see that he can create positive change in the world that he lives in. After showing the pictures and reading the story, dad held James for two hours before leaving. They reviewed all of the fun activities that they are looking forward to.  Afternoon: Dad headed out of town for a few days. James slept for the majority of the day. His Primary Nurse and RT took good care of him until Mom was done doing the 85th load of laundry. Evening: James was a little restless so after suctioning we did a diaper change. He peed like a fountain during the diaper change and we then needed to change his onesie and bedding. He was still agitated so we used the 60cc syringe to vent his GTube to release some gas. During this h...

Friday, June 25th, 2021 James started off the morning projectile vomiting on his Primary who just returned from her week off. So this morning we did bath and trach care earlier than expected. Today James is sportin one of his new onesies Dad got for Father's Day along with his converse sock sneakers! It taken take very long for his G-tube to leak and change into another outfit. His G-tube just needs time to heal and for the stoma to get smaller. He is a very happy baby wanting to be held and cuddled all the time. In the evening Mom tried sham feeding with James. This was the first time James was put to breast. Sham feeding is when the Mom pumps and empties first so that no milk will come out when the baby is nursing. At this same time James is getting fed through the G-tube so he is feeling full. It took a couple of times for him to latch and understand the difference between the pacifier and a nipple. We have not had a swallow study done to determine if James is able to coordinate...

Thursday, June 24th, 2021 Measurements: Weigh-in: 5970 grams (13lb 2oz) Length: 21.06 inches Blood Gas: 58.7mmHg Updates: Care Conference is scheduled for Wednesday, June 30th at 12pm. We need to get everyone on the same page and start talking about going home. Get James on the trilogy for trials and talk about vent settings. 🫁 James now pees very far. We've had to change the bedding 5x in the last 2 days. It's like a fountain! ⛲ At this point we have removed all IVs due to failing to flush. 💉 He has not had any Morphine since Tuesday. We weaned again on the Methadone. 💊 James has been doing a lot better overall with his BPD episodes and has been able to self soothe. He is getting good stretches of sleep through the night also! 🤩 P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Wednesday, June 23rd, 2021 Change/Updates: New Doctor today Vent Settings: Increase Tidal Volume from 53 to 60 Decreased PEEP from 13 to 12 Continuing on Automode for 2 hours on Day Shift and 2 hours on Night shift. May increase length of time. James is doing really well with it. His G-tube had a bloody gauze last night and also leaked through his onesie and blanket. The contact at the doctor and surgeon who said that this was okay due to this new G-tube replacement causing some trauma. So we just need this to heal and get a little more snug around the button. Overall he had a really good night of sleep. Mom just held him a lot today while trying to figure out painful health insurance/ Cobra/ Marketplace/ Medicaid information. The worst! Is anyone really knowledgeable with this stuff? Mom and Dad did the trach change today. In the evening, James sat up in his boppy and looked around the room while listening to Disney lullabies. P.S. You can email James your love and support as often as...

Tuesday, June 22nd, 2021 Weighed in last night at 5995 grams (13lb 3oz). We did a PRN morphine for pain at 9pm and another at 8am. He had a good stretch of sleep last night with only a few wet diaper changes. His Os got down to 25% with a low heart rate and some good waveforms on his monitor. We breathe 21%, which is room air. He loves sticking his tongue right now and bringing his hands to his tongue. Showing off his karate moves Sometimes we use a t-shirt rolled up to hold his pacifier in. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com