The Journey of James Weston

Saturday, May 22nd, 2021 James started the morning with an episode around the 7:30am and was inconsolable. The two main issues today is that James has not had a bowel movement in a while, today is his third day. Secondly, James has been having very bad reflux. Spitting up large amounts of his feed and gagging/choking. He needs to be sat up quite often. After his episode the nurse held him which he very much enjoyed. Mom then also held him. He did not want to be put down and enjoyed in a shoulder hold, face down or chest to chest. James had several episodes throughout the day. These were all pretty severe with very rapid desats. And again very inconsolable. One issue is that his leads and pulse oximeter continue to not read correctly. The BPD sweats and him flailing around. It is super nerve-racking when he is having an episode yet all of the his stats just look like ➖➖➖ on the monitor. We also met with the pulmonologist at the end of the day. This was his first look at James, besides g...

Friday, May 21st, 2021 New nurse today who had never had James before because she had a primary previously who just went home. James welcomed her in with an episode in the morning and several more throughout the day. James had speech therapy and physical therapy early this morning. They tag teamed at the same time.  ENT also stopped by to check on his trach site, which looks good. She helped us sort through and organize the five trachs we have in the room; putting most of them in a drawer. Now we have the correct emergency trach hanging up!  Mom was holding James for about 2 hours and around 2:00pm he ended up having a pretty bad BPD episode. Mom put him back in the bed James turned purple blue and desated into the 40s. He had several episodes throughout the day but this was the worst one (at this point). James sat up in his boppy and was very alert after Mom handled trach tie change with the RT. He would rather sit up than lie down. Around 6:30pm right before shift change Jam...

Thursday, May 20th, 2021 James is 20 weeks old! (5 months? Or do we wait for the 31st of May? No one knows..) Overall James had a good day with only a few events. He got weighed this morning and is now 4880 grams (10lb 12oz). We are almost there! Update on the G-tube situation: They are working on getting the non-balloon option. Should be in sometime next week! This was recommended to Mom by another Trach/Gtube Mama when she reached out to her FB group. It also helped that our nurse advocated for us! MiniONE Non-Balloon Button Here are his updated ventilator settings: James is due for an ultrasound of his heart. These are typically monthly when babies are on ventilators. He will get this tomorrow. Mom is starting to wean on the pumping. It is just not going to be physically impossible being James's primary nurse 24/7 and being able to keep up with pumping and washing bottles. It is super sad because this is not what the plan was but then again none of this was planned. James has al...

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...