The Journey of James Weston

Monday, May 3rd, 2021 12am - Wide awake. Photos below. 2am - Early Morning BPD episode. In the middle of Mom's pump, James had bradyed down to the 50s and desated into 40s. After that we did hands on and trach care. He lost some weight at 4215 grams (9lb 5oz). The night before he weighed 4220 grams. 3am - Looks like James is ready for some sleep. 9am - Hands on. James had a BPD spell and a massive diaper. The episode happened during the bowel movement, which is pretty consistent with BPD. 10:30am - Time in the swing 11am - Doctor updated us that James is doing well with his weight even though he lost last night. Overall for the week he is up. He also needed to get the rest of his 4 month vaccines. He only just had his 2 month vaccines at 3 months. Towards the end of the Doctor's examination while he was in the swing James had a really bad episode where he desated and bradyed into the 40s. 😥 2:30pm - BPD spell with brady and desat. 3:00pm - Checked blood (heel stick) for level ...

Sunday, May 2, 2021 Morning :  James had a fairly uneventful night, which is good!  He greeted his primary with a Brady and destat, but she knows how to quickly help him recover.  After a few diaper changes, bump in his PEEP to 14, cool towel on the head, clothes off, and put into the Boppy ... James is now calm and relaxed.  Afternoon:  After a calm morning, Dad read James two books. “The Rainbow Fish” (a gift from Dalila) and “The Grinch Who Stole Christmas.” (A gift from the Biggs family).  Then Dad held James for 75 minutes. They were about to bond and talk things through, specifically around playtime and fun when they get home.   And then ... The doctor came in and mentions that James is doing really well. He’s right where he’s supposed to be. His vaccines and shots will be pushed back a few days due to the UTI antibiotics. When Dad mentioned that we are approximately 4 weeks away from going home, the doctor quickly stated something along...

Saturday, May 1st, 2021 Lost weight last night, back down to 4060 grams (8lb 25oz). Morning Update from Doctor: Increased his feed up to 96ml/feed, since James has not been hitting his average daily weight gain. He has only been gaining 4 grams/daily on average when it needs to be more like 15. This is important for his brain. James' urine culture came back positive for a urinary tract infection. They started an IV in his head. He will get a course of IV antibiotics (gentamicin) run over 30 minutes once a day (q24). Good thing Mom suggested this to the Doctor. She had noticed that he was having more diapers than usual with just pee, sometimes they would be very light. The most important thing she noticed was that when James was having a spell and she went to go check his diaper he was always in mid stream peeing. (Hopefully this helps someone else who googles for baby UTI symptoms).  #urgencyfrequencyburning Want to know the worst sound in the world? The Mom nextdoor hysterically ...

Friday, April 30th, 2021 Overall James had a good day and another great nurse who was very familiar with trachs and g-tubes. It was great to have James active during the day. A few episodes but very short lived. 9:00am Doctor Bedside Report & Hands On Increased the pressure support above PEEP from 20 to 22. (We think this has helped today to recover sooner.) We think James may have a UTI so he needed to get a urine culture done. Unfortunately that involved getting cathed. It will take a few days on the results. Increasing his feeds to 90ml (2 oz). Tomorrow we change Doctors, one that we've had in the past. Wonder if she'll recognize James. Lol 10:00am Tummy time on Boppy with baby mobile and YouTube Lullabies 11:00am Sterile Procedure Urine catheter placed for culture.  So far by 6pm no bacteria has grown, but we will want to wait the full 48 hours. 1:15pm Physical Therapy PT stopped in to work with James. He was held for a short bit, focusing on him sitting up and holding ...

Thursday, April 29th, 2021 Last night weighed in at 4050 (8lb 14 oz) Tonight 4105 grams (9lb)! Today's events: 9am Physical Therapy Goal is to keep his arms and hands forward. Either with a rolled up towel or by pressing at his shoulders forward. We also need to put together a day time schedule of activities James can do to help with light cycling. 10am Bedside Update with Doctor James officially has hernia. The Doctor had Mom feel it. It makes a very loud squishy sound when you push the intestinal loop back into the abdominal wall. So James will definitely need to have surgery, but they want to wait closer to discharge so that he is bigger. We started microweaning the methadone in the afternoon. 1pm Speech Therapy James had several episodes during this. He really does love his pacifier and milk but was having a hard time due to the lung spasms. Goal is for Mom/Dad to hold James daily. Try to have as much skin to skin as possible. Even if this is simply James' head on our arm. ...

Wednesday, April 28th, 2021 Today we changed Doctors, this is another great Doctor who we really like and have had since we've been back in the NICU. Overall James had a good day today. We had a new nurse because our primary nurse was floated to a different department. However this new nurse is one of the best nurses we've ever had, definitely top three!  James did not have too many events during the day. Just one at the beginning of the day shift and one towards the end. Our nurse today showed us that we can vent the G-tube with a syringe. Game changer! This gave James instant relief by releasing the gas from his stomach.  James started off the morning with physical therapy. He had a new PT instructor today, who was able to show Mom some new ways for James to do tummy time across her lap. After PT, Mom held James for 2 hours. Then Mom and Dad gave James a bath. This was his first tub bath since the trach and G-tube surgery. He did really well and fell asleep again!  Afte...

Tuesday, April 27, 2021 It's the end of April already! When did that happen? James has a really good day in part due to his Primary Nurse being here. He did some tummy time and showed us he could lift himself up without using his hands. Very strong! 💪 One episode this morning around 9am, tummy time, awake time with his mobile and interaction, trach change, and nap.  The trach change went well with his Bovina Flex 3.5. Mom was assisted by the RT while Dad watched. The RT removed the trach and Mom put in the new trach and then attached the oxygen to the new suction catheter. It's pretty intense but this time, no tears. The hard part is always being ready for potentially needing to go to Emergency Step 2 (putting in the smaller 3.0 trach if the 3.5 doesn't fit) and Emergency Step 3 (bagging him if the 3.0 doesn't work, while calling 911). 😱 🆘🚑 Yes this is a once a week ordeal. #HelloAnxiety No change to his weight.  He had a better night with a 4 hour stretch of sleep ...

Monday, April 26th, 2021 Changes today: After a 1am weigh in last night at 3840 grams, losing an ounce. He ended up gaining tonight at 3940 grams (8lb 10oz). He measured at 17.5 inches long. We have made some vent setting changes by decreasing the Rate from 30 to 25. The reason for this is because his blood gases recently were good. Also we may not have mentioned but a couple of days ago we switched James from morphine to methadone. In a few days, we will begin weaning him off. We did trach care at 1am along with weighing him and changing his clothes. This morning around 9am we needed to draw blood for a CBC panel and for the exome sequencing test. They tried drawing it from an artery in his left arm and that was horrible to watch. Eventually they got someone who was really good at IVs to come in and take it from his head. We knew eventually they'd use those veins, so that is a bandaid on his head. We did the trach tie change right after his 4:30pm episode. Charting of BPD episodes...