The Journey of James Weston

Wednesday, March 16th, 2022 James seemed like he was getting worse so Mom called the pediatrician to see if we could come in today for a sputum culture. Unfortunately their response was pretty crappy telling us just to go to the ER. What is the point of having a pediatrician then, especially being part of the complex care clinic? We called the Pulmonologist afterwards and they told us they could take us if we could come in in 20 minutes. They are about 12 minutes away so Mom quickly packed everything up. She was planning to just go and make the first trip solo with James in the car, but it wouldn't have been ideal considering James needed to be suctioned often at the moment. Dad ended up rescheduling some calls so he could drive which worked out. We made it about 10 minutes late, because there's just a lot to do! A lot of equipment and double checking! Even though we are very proficient at this point, moving as fast as possible, it still takes time. And there was traffic, Tampa...

Tuesday, March 15th, 2022 James does not look like he is feeling well. He feels warm and most likely has a fever. 🤧 We have 4 different thermometers that all show different temps. We haven't found one yet that seems accurate. Children and babies with trachs are more susceptible to getting sick, which means if others (especially children) are sick they should not be in contact with an immunocompromised trach ventilator dependent baby. 😷 James has also been scratching around his trach ties as soon below in a GIF. We've been using Nystatin powder on his trach ties and also applying it directly on his neck.  We have held off on his bolus feeding until we can get his secretions under control. We've had to use saline bullets to flush out his ballard through his circuit. Also emptying the humidification chamber twice a day to wash and clean. Sometimes it's just bad allergies (James is allergic to grass) but Mom is leaning towards this being an infection due to the fact that ...

Monday, March 14th, 2022 James had a GI appointment in the afternoon. We received the OK 👌 to try some bolus feeds in his G-tube. This will be the start of transitioning him from 24 hour continuous in his J-tube to bolus feeds in his G-tube. We will start by doing 1 Bolus for 2 hours with a 2 hour break with the other 20 hours being continuous. Then if tolerating for a few weeks increasing to 2 Bolus feeds for 2 hours each with (2) 2 hour breaks, with 16 hours on continuous feeds. At this appointment, the doctor also said to make sure the prevacid (which James has been taking since July) is going through the G-tube.and being clamped for 40-60 mins after. We've been putting it through the J-tube because that is what the order was for AND Mom even brought this up to the Doctor several times about how she read acid reflux meds need to be in the G-tube, but he always confirmed the J was fine. Well now all of a sudden he changed his mind. 🤷🏻‍♀️ After the appointment we took James to ...

Sunday, March 13th, 2022 Going into the work week with no nursing = No more "Sunday Scaries"! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Saturday, March 12th, 2022 James got some snuggles and a nap with Dad.  You can see in some of the photos of James getting tangled in cords that he has a lot stacked against him even if he was just a full-term 1-year-old.  He is 14 ½ months but only 11 months adjusted. He was sedated for 9 of those months and was pretty much bedbound. Other full-term babies have been active since birth. James has only had about 5 ½ months of moving around. When he does want to do tummy time, roll over, and just be a one-year-old he has to battle cords, tubing, ad know what side his circuit is on so he can figure out which way to go so he does not get decannulated or disconnected from the ventilator. Even Mom is unsure of which way to flip over sometimes, so how can we expect James to figure it out. It's like American Ninja Warrior Baby. 🏋🏻‍♂️🇺🇲🦅 Uncle Dr. David stopped by for dinner before be left with Dad left for the comedy show. Mom was going to handle trach care herself tonight. Tomor...