The Journey of James Weston

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...

Tuesday, May 11th, 2021 Good day overall. Tomorrow we change Doctors again. Today we had James had 3 really heavy dirty diapers this afternoon. We were waiting for those! Wouldn't be surprised if he loses weight tonight. Changes: Gained more weight - now at 4500 grams (9lb 14.7oz). He has been gaining a little too much too fast; it's not a healthy gain. So although we are increasing to 110mls we have switched out a formula feed for a breastmilk feed. So 4 Breastmilks (20 calories) and 2 Formulas (30 calories).  Mom and Dad did the trach tie changes again themselves. We feel confident in this process but will only get better the more we do it. Tomorrow is the trach change! Scary for us, but we are going to attempt this together tomorrow. We will need to effectively communicate who is doing what. Who is pulling the old trach out, who is putting the new trach in, who is disconnecting the oxygen, who is reconnecting the oxygen. Those are the main steps that need to be identified an...

Monday, May 10th, 2021 ..... May 10th?!? James had a rough night and busy morning.  12:45am - Mom went to sleep...  2:30am - 3:15am ...For less than 2 hours. Mom heard James make a noise. Ended up having a wet diaper. Since he was up Mom did Trach care with the RT and then G-tube care with the RN. He ended up having a rainout in his circuit (when condensation builds up and floods his trach). This caused James to desat and brady.  This is probably the most dangerous thing that can happen in the middle of the night. By the time alarms go off it could be too late. In one of Mom's trach groups, she read about how yesterday (Mother's Day) a Mom who does not have Home Health nursing had to do CPR on her baby boy and ended up getting a helicopter flight to a Children's hospital. He had aspirated water from the circuit. She normally would have an alarm set to go off every 2 hours to empty the water, but she didn't wake up this time. She asked the group how to deal with the high...

Sunday, May 9, 2021 Last night :   James had another weight gain last night. He’s 4410g or 9 pounds 11 ounces.  He had a pretty calm night. He slept for most of the night except for two small episodes.  The night nurse did a great job at working with James and getting him comfortable.  She did a wash cloth bath due to the IV his his foot.  Didn’t change his gauze due to him sleeping and not wanting to disturb.  Overall, a pretty good night.  We did attempt a photo shoot with a new onsie that Dad bought for Mother’s Day,  but James knew it was too big and just wasn’t having it.  Morning :  James has one of his favorite nurses today outside of his Primary.  She’s REALLY good. James greeted her with a small episode around 8am. After we calmed him down with the fan and firm pats on the back, she showed Dad a few ways that she likes to hold him and maneuver him. She held him for about an hour in different positions as Dad obs...