The Journey of James Weston

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...

Friday, March 11th, 2022 We did the weekly trach change last night and we had the hardest time getting the trach apart from the ballard. Mom reached out to the Trach Moms FB group to see if there were any tip and tricks to get it apart. The resounding answer was that we were out of luck but we could try a hammer to break the ballard off. Well that didn't work, so we had to throw it away. Why did this get so tight? It seems as though the ballards are slightly different sizes allowing some to go further on the trach than others. In the close up photo below, you can see the cracks in the ballard, which is the clear plastic piece. Normal you can use the "wedge" or some people call it the "tooth" to wiggle the two apart. But not this time! There was no way to get it in there. In the last photo with James you can see how the ballard doesn't go all the way up to the trach; there is a space. That is how it's supposed to be. So unfortunately we had to toss this t...

Thursday, March 10th, 2022 Today was a full day with Mom! Lots of tummy time, eye patching, and using his new Crawligator from Great Aunt Kay! This will help him gain strength in his arms and scoot across the floor without dragging his G-tube. Since we got rid of our primary insurance starting in March our Baycare DME is not contracted with Medicaid. Soo that means Mom needs to get the other DME, Brownings, to take over their suppy order. Most importantly supply us with a feeding pump, so we can return the one we have back to Baycare. Baycare calls Mom daily asking to pick up the Infinity feeding pump. They are ridiculous. It's quite a process and they know this they are just being difficult. When working with Insurance, DMEs, and Doctor's offices nothing is easy and everything takes multiple phone calls and emails to get something done. This DME  also didn't send us our supplies for February while we were still on Cigna. Why? Because the woman's husband was having surg...

Wednesday, March 9th, 2022 The photo of James sleeping is how he positions himself. He is always trying to put a pillow or blanket over his eyes when he's sleeping. Today we had physical therapy in the afternoon and Mom let her know that we let nursing go. She thought it was a great idea and that Mom would be able to bond more with James. This is true. We had our 6 month evaluation where James was basically tested on the original goals to see what was met so far. This one was done by our PT who is a 3rd party however in a few weeks we would have another one done by Early Steps directly but over the phone. Leave it to a government program to add unnecessary steps! We took another video of James doing a Passy Muir Trial right before bed. He was tired but also really likes hearing himself so he had to concentratea really hard!  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 re...

Tuesday, March 8th, 2022 Our Medicaid Case Manager stopped by for her monthly visit. Mom had left her two messages over the course of the last month and never got a return phone call. Her response was that she thought she would just address it at our next meeting. Except the reason mom was calling was because of time sensitive insurance issues that she addressed on her voicemails. In the end she was unable to help us with any claims or authorizations so unsure of the point of having an insurance case manager. Mom let her know that the plan was to get rid of Nursing completely. At that point she informed Mom that she would no longer be able to be working on our case because she was a clinical nurse manager that only handled Medicaid cases with nursing. Oh no it's going to be such a loss. 😄Super nice, just pointless. After she left Mom called the staffing agency to let them know that she would like to cancel all nursing effective immediately. It worked out that our Tuesday nurse had...

Monday, March 7th, 2022 Our nurse worked today and it was awkward. After how she acted Friday we figured it just wouldn't be the same, and it wasn't. Mom had a Doctor's appointment early in the morning, and as she left Dad and the nurse were discussing eye patching as well as getting James on a schedule. More to come on that later... In the afternoon, James had a visit from the Clinical Nurse Supervisor who only told the nurse she was coming and never contacted Mom. She is supposed to come once a month, but due to the shortage of staff comes every 2 months. Mainly just a lot of administrative duties that is required by the staffing agency, like documenting any changes and updates to James' medications and orders. During this meeting Mom received a text from the staffing agency that our Tuesday nurse would be not be returning effective immediately. This was actually great news since Mom wanted to let her go anyways. Supposedly she just didn't like the schedule and wo...

Sunday, March 6th, 2022 Check out the video below. James make the sweetest sound and doesn't cry a tear! He is getting the hang of the passy muir valve! 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...