The Journey of James Weston

Wednesday May 19th 2021 We switched from neonatal vent settings to pediatric vent settings because the tidal volume was limited 50. In order to do this switch we actually needed to switch out the vent and needed to disconnect James from the oxygen and provide manual ventilation through an an ambu bag. Mom got her first practice using an ambu bag. She did not want to just practice on him for the heck of it but since we were going to need to do it anyways this was a chance for her to feel how it would be in an emergency situation. It was not what she expected. You actually need to squeeze pretty firm and faster than you would think. She needed to use both hands at one point. Also it's good to know that your hands get tired in case you're ever in that situation. Over the course of the day we spoke with our social worker, discharge coordinator, and a nurse practitioner from what will be our pediatrician after we leave the hospital called the complex care clinic. It was a lot of inf...

Tuesday, May 18th, 2021 Changes/Updates: Feed increased 115 mls After bagging episode - increased clonidine, added  PRN morphine, increased PEEP to 13 Home vent was in ordered Working on increasing the tidal volume; need to change to a pediatric ventilator Moved all trach care to day shift James had a pretty rough night and so he slept a lot today continuing this cycle that we can't get out of! We noticed that although James was sleeping he was having pretty severe lung retractions. Around 11:30am James had a severe bronchospasm while having a bowel movement causing his heart to brady and his oxygen level to desat into the 20s. He went down quickly and turned blue/purple. Mom asked the respiratory therapist to bag him. He was not going to come back up on his own. The RT forced breaths with the bag getting James to come out of it. A lot of people were in the room including the new doctor that we just transitioned to today. Mom's heart can handle this! After this scary episode t...

Monday, May 17th, 2021 First Juju came to visit in the morning and then Aunt Robin in the afternoon for their last day before heading back to Jacksonville. We are only allowed one visitor at a time along with only one badged parent. This means if grandma is visiting with Mom, Dad is not allowed to visit. It is better than nothing! Speech Therapy came by and we talked about what are the priorities currently. Right now the goal is for James to get on the home vent. Once he is on the home vent and stable we can then begin to discuss swallow studies. Mom was also informed that when we are doing milk tastes on the pacifier that James should only be getting the residue from the pacifier and not a bunch of large drips. The other day during a milk taste he received too much milk by mouth and threw up. So only the residue from now on! James slept for majority of the day, so we were worried he would have a rough night. Sometimes he just needs to rest. After all the main priority is for James to ...

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...