The Journey of James Weston

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...

Monday, February 14th, 2022 Crazy to think that this is James' 2nd Valentine's day! Last year on this day was the first time Mom was able to hold James at 48 days old on a pillow! To this day, we have not come across anyone that has had to wait that long! It's the one thing we regret not pushing the Doctors on. At the time he was still so fragile and things were up and down daily. As new parents, we had just assumed the Doctors would have wanted us to do "skin to skin" as soon as possible. We didn't push until friends of ours who also had a micro preemie a few years prior told us to speak up. Because we didn't get that close bonding time being in the hospital so long, James doesn't always like to be held.  First photo and video show just how small James was this time last year. This year Mom and Dad just spent their Valentine's Day with James. As Dad would say, it's just a Hallmark holiday! In the morning James' omniflex broke on his circui...

Sunday, February 13th, 2022 We went back to the Zoo but this time Mom held James in a baby carrier. We managed to balance the weight of the ventilator with the weight of the oxygen tank, suction machine, and the to-go/diaper/emergency bag. Mom then held the circuit, Feed tubing, and Farrell bag tubing in her left hand so it wouldn't hang on the ground. We did disconnect his pulse ox cord to eliminate one cord! Dad pushed the stroller with the equipment so Mom stayed tethered. At first James was not a fan because he typically does not like to be held so close, being face to face. But then he fell asleep. James now weighs 20lbs but the carrier was very comfortable and Mom wore him the entire time as we walked around the Zoo.  We had a cool experience with the o rangutans  🐒🐵. We just happen to be in the front when they began feeding them heads of lettuce. Check out the video! James also got to experience two rhinoceros 🦏 🦏 playing with each other head butting and running aro...