The Journey of James Weston

Sunday, February 20th, 2022 James had tastes of banana. He wasn't a huge fan but that was probably because he was due for a nap and it was chilled and not room temp. Right now we are trying to go as natural as possible with using real bananas and avocados. When we do use pre-made we are using Gerber 1st Foods. We watched the Sound of music and Frozen II. While Dad took a nap Mom tested James in his big boy stroller seat that replaces the car seat insert. It seems a little big for him but he sat up just fine.  Morning Nap 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, February 19th, 2022 James sportin' a new custom 18 mth hand made T-shirt from Mom's college buddies Ash & Maria. #H3B #CoolKid  And yes those are Buc-ee's boxers! Mom also squeezed him in a 9 mth fishing T-shirt that he never got to wear from "Cousin" Mary! Dad made more pancakes 🥞 and we watched more Disney movies.  Update on Helmet: We recently found out that Cigna denied the coverage for his medical helmet needed because of James' plagiocephaly (flat spot on baby's head). Why did they deny it? There is an exclusion for this on our Cigna policy. So even though our secondary Medicaid approved at first, because there was an exclusion with our primary now Medicaid will deny, says the Helmet office. AND out of pocket this helmet costs $2700 which at 14 months there is a good chance this may not even help at this point. WTF 🤬 The number one reason we are so upset with this situation is because we could have started looking into this back in th...

Friday, February 18th, 2022 Unlucky Friday! We just found out our baby formula was recalled for a salmonella outbreak. We checked all of the lot numbers and found out that half of our stash was contaminated! Our air conditioner also stopped working last night. We put a fan on James and removed all of the blankets. Fortunately our landlord works fast and had someone over quickly to fix it.  James had physical therapy bright and early and it was rough. Partly because he has to be suctioned more often in the morning. He was pretty upset the whole time. Once that was over we needed to give him his meds and breathing treatment. The nebulizer (air compressor) basically just stopped working. There wasn't enough pressure to deliver the medicine. What would normally take 10 minutes was taking 45 minutes. So Mom called the DME to let them know. We also needed 4 oxygen tanks delivered. They say they would need to inspect the machine and follow up with the manufacturer to see if there is a war...

Thursday, February 17th, 2022 We had a speech appointment this morning at the hospital. When we arrived we had another oxygen tank mishap. This time with a different nurse. Essentially she didn't do all the steps to turn the oxygen tank on when we loaded the car. Mind you, we've been going to appointments for 5 months. Not only that but this is some basic nursing shit! Isn't the nurse's duty to protect the patient's safety, to do no harm?! So for the entire drive to the hospital and James wasn't getting any oxygen. Mom found this out when she was placing the tank in the stroller, unloading the car and saw it was still set at zero. Mom let the nurse know she never turned it on. No apology, she didn't even respond. 😑 Mom is so over it! Thank the Lord James is on a low flow and is stable. So the purpose of the appointment was for James to be able to use his Passy Muir Valve. Unfortunately since there are so many different kinds of PMVs the therapist did not kn...

Wednesday, February 16th, 2022 Nurses are driving Mom crazy. Mom took a shower in the morning while the nurse watched James. As Mom was walking downstairs she saw James crying in his bouncer. He never cries (well we can't hear him cry) but he was clearly upset. Mom investigated to find that his med port had opened up, he was soaking wet and so was the bouncer seat. His formula was leaking everywhere. The nurse wasn't paying attention. 🙍🏻‍♀️ This is why Mom rarely showered in the hospital unless she had a nurse she trusted or Dad was there. Seems like home health nursing is worse, since we've had this nurse for over 5 months and training still needs to be done. James was not in a good mood today. Taking long naps and when he was awake not wanting to sit up. Morning Nap Setting off the LOW PEEP alarm wiggling Ready for Bed 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...

Tuesday, February 15th, 2022 Mom spent the day (and yesterday too) on the phone with Medicaid and DCF trying to file for an appeal for something insurance won't approve.  The automated phone call starts out.. "Thank you for calling...Press 1 if you're a Member, Press 2...yada yada". Finally reaching someone typically after a 2 hour wait they need to confirm who you are. They want your name, the patient's name, DOB, SSN, street address, hospital street address, phone number, email address. Once that it's confirmed you say who you say you are, they want to know how to help you. You explain you just need to be transferred to the Appeals Department, then they transfer you..."Thank you for calling. We are closed. Our hours are between 8am and 6pm. (It's not even 5:15pm yet)...To leave a message, press 1". You press 1  Click!  Disconnected. 😑 Time to try again..."Thank you for calling...Press 1 if you're a Member, Press 2..." After anoth...