The Journey of James Weston

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...

Saturday, May 8th, 2021 James had a pretty good night. He had a good stretch of sleep from 2:00 am to 6:00 am. Yes Mom got 4 hours of sleep! He had his typical event at 7:00 am welcoming in shift change bradying and desating. He then was able to take two short naps in the morning which was super helpful for Mom as well. This morning James did tummy time immediately when the shift changed. Then he spent time in his swing. Sleeping through both of these activities. His primary nurse held him for a good while keeping him alert and chatting with him about all the different types of foods that he'll eat one day. 😂 James has been doing a new thing this week where he turns his head back and forth looking side to side and all around. He is working on his head control. It is adorable! However Mom has not been able to take any pictures or video of him doing this because either an RN or RT is holding him up at the time and they cannot be photographed. Maybe sometime this week Mom will be abl...

Friday, May 7th, 2021 Last night was decent. He had a good run of sleep from midnight to 4:00am. 😴 Then he had back-to-back BPD episodes from about 4:00am to 6:30am. 😮 Same great nurse and intern today as yesterday. It was nice to have the continuity of care! Today was the last day of antibiotics for his UTI. He only had one more dose to go at 3pm!! 💉 Unfortunately his scalp IV became loose sand be fell out (it was already superficial). They needed to get another IV! Four IVs for a 7-day antibiotic! This time the intern managed to get an IV into his left foot on her second attempt after trying his hand. Finally his last dose of antibiotics was administred at 3pm. But this UTI isn't over... The urine culture that had been brewing for the past 48 hours kinda came back with a new type of bacteria in the urine. 🦠🧫 🤷‍♀️ It's a version of staph, probably from all of the urine catheters that have been tried. So we have 2 options... Option A) Doing another urine cath to make sure...

Thursday, May 6th, 2021 James has had BPD episodes all morning. Last night was pretty rough too. He weighed in at 4130 grams (9lb 1oz) last night and 4280 tonight (9lb 6oz). New Doctor today in the rotation. No changes. PT and Speech came by. We have an RN who is really sweet to James and an intern who is one of the best yet. They have been on top of it today. At 1pm an IV was attempted so we could give him his antibiotic by 3pm. Mom informed the nurse that we needed 3 people previously to hold him down. An RT last week tried to hold his arm while getting an IV in his wrist and failed because James is strong and moves. Mom offered her to help hold him down this time. Our RN managed to get it in his hand but then lost the IV because James had moved. Probably needed another set of hands to hold him down. The RN thought she could hold down his arm down while holding the IV and he is pretty strong (and moves a lot) so it came out. Now it's time to get the Charge Nurse who was successfu...