The Journey of James Weston

Sunday, May 16th, 2021 James had a pretty good morning with only a few BPD episodes! Today we had our primary nurse again. Magical! Juju got pooped on while holding James during an explosive diaper. She also had breastmilk accidentally spilled on her every day so far! She said it's full circle! 😂  In the afternoon, Dad got in from his trip to New Jersey surprising Grandpa Don at his 80th surprise birthday party. James had a solid afternoon. He mostly slept. Dad then led the Trach Tie changes with the RT today. He handled it with lots of comfort and confidence. Got it perfect on the first attempt.   James  then did Tummy Time on his Boppy for a few hours.  Pretty calm day for Baby James.  Dad read him “The Lorax” and showed him all the photos from Grandpa Don’s party.  In the evening, Juju and Aunt Robin helped Mom organize all of the frozen breast milk at home between the two deep freezers. Since the breast milk had been put in as it was created the J...

Saturday, May 15th, 2021 We had a great RN & RT who were very familiar with James and his needs! He had a really good day! James had a milk bath. Unfortunately too much of mom's breast milk was thawed out. It needs to be used within 24 hours after being frozen. James loved the bath and had very soft skin afterwards. We were able to wean him into the twenties on his FiO2. Changes: Only weighing James on Mondays and Thursdays We had one of our favorite night shift nurses again!  Around 3:30am, James had his G-tube dislodged for the the second time in 2 weeks. They are saying the balloon deflated probably due to stomach acid and James bearing down. He did have a previous episode at 1:30am. There was a hole in the balloon. Radiology was able to confirm placement of the new G-tube at bedside. Mom reached out to her Facebook Trach moms to see if this has happened to anyone else. She received a ton of responses from people saying that this has happened to them as well. So I guess this...

Friday, May 14th, 2021 We had our primary nurse for the third day in a row now!! It was awesome. 👩‍⚕️🏥 We also had one of our favorite RTs today. And again lots of friendly stop-bys from RNs who want to meet our visitor and say Hello to James! 🤗  James has had a pretty relaxing morning taking a nap and having sweet dreams. Mom was able to finally capture a good photo of him smiling! He did really well in speech therapy today. James is getting stronger and stronger with his pacifier and really enjoyed the milk tastes. Changes: James has outgrown his clonidine dosage. So he needs to be weight adjusted, which means this will be increased. His methadone will continue to be weaned and hopefully over the next week he will be off of all opioids. James has a tub bath today and had his trach tie changes. Aunt Robin was able to observe both of those up close! Lots of photos! 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 th...

Thursday, May 13th, 2021 Grandma who will be referred to as Juju visited the NICU and met her first grand baby for the first time! It was very emotional. All of the RNs and RTs were so sweet with him and were stopping by to meet Juju. She was able to watch Mom do the trach tie change and hold a couple of times. He listened to her stories and made great eye contact. Changes: Increased Tidal Volume to 50 because he has grown. Starting Melatonin at night to help of his sleep cycle. James had an excellent night. Our night nurse was on top of it! He only really had two events at 8:00pm and 3:00am. We really think between the increase in tidal volume, the Melatonin, being connected to the farrell bag, and the gas drops being consistently given something has helped the BPD episodes! Sometimes it's hard when there are so many variables to take one away! 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...

Wednesday, May 12th, 2021 Mom slept from about 7am-8am and then woke to James bradying and desating pretty low. Today we have our primary nurse and her intern back. 🤗 She encouraged Mom to go home and get a few hours sleep before the trach change in the afternoon. There are only a few nurses where Mom would feel comfortable leaving, taking a shower, or even eating downstairs in the cafeteria. However for Mom she is at the point where she doesn't really feel comfortable leaving James ever. So that's a really hard decision to make but she's going to be admitted into the hospital soon if she is getting zero sleep.  Did we mention that we just found out that our Cigna insurance covers only so many days of Home Health nursing care? Yes James will probably need 24/7 care for 3 years and we only get about 3 months covered. 😔 It's also extremely hard to get coverage even if your insurance approves it. James is a Mer-man with his fish tail. 🧜‍♂️ James did tummy time in the mo...