Day 104 - A Very Busy Tuesday Morning 🥼
Tuesday, April 13th, 2021
Lots of people stopped by today!
👩🏻⚕️🩺👩⚕️👩🏼⚕️🏥👩🏽⚕️👨⚕️🥼👩🏾⚕️🏨👩🏾⚕️👨🏻⚕️
ENT Check-up - The nurse practitioner stopped by to take a look at his trach and stoma, since we've been hearing a leak. Essentially she said we could go up to 2mls of sterile water in his cuff, but that staying at the 3.0 bovina is the right fit.
Trach Camp Training - Mom and Dad went through a trach training course. They learned how to do trach care, cleaning the stoma, changing split gause pads, changing the trach, what to do in an emergency situation like putting in the smaller trach or calling 911 and bagging James. It was a lot of information in a short period of time which is why now we take the information we just learned and practice with the nurses every day on every shift. James gets his trach changed on Tuesdays, his trach ties changed daily, and his gause pads changed every shift (same for his G-tube).
Eye Exam - James had his final ROP test and officially passed! He will no longer need these eye exams!!! He had a little bit of residual blood from the surgery. So it was a little scary to see a blood come out of his eye afterwards.👁️👁️
Parent Advocate Update - Our NICU advocate stopped by to check up on James and we just gave her an update. We also let her know of our concerns with the previous nights.
Doctor Daily Bedside Visit - Our new Primary Doctor went over the game plan and was very inclusive with her decisions. Starting tomorrow we are going to make some changes on his ventilator settings... allowing him to have a longer exhale, possibly decreasing the rate, an increasing the tidal volume. Unfortunately there is not a One-Stop shop answer for BPD. It's a lot trials based on what the baby tells you they need. Mom read today in a Trach Facebook group that anything that makes a BPDer uncomfortable will make them breathe badly. And because of that some have found that feeding sometimes is the culprit and have changed the feeding schedule, vented more frequently, and lowered calorie concentration which helped a ton. 🤷♀️
On a side note, we found out that James has rickets. Something that Mom missed in the clinical notes on the online hospital portal. This was diagnosed back on 2/1, showing up in a right wrist x-ray. Since then they have been treating him by giving him Vitamin D supplements. The reason we found out today is because our doctor is very thorough.
Orthopedic Consult - We had asked if the pediatric orthopedic could take a look at his most recent X-ray done on 4/1 while he was in the PICU. The original write-up was done by someone who normally looks at adult orthopedic x-rays and we just wanted clarification. We didn't expect to hear any definite answers other than we don't know what we're looking at yet regarding the shortened long bones. They could grow and he could also have something new that has not been diagnosed yet. Only time will tell. 🦴
So far James is having a better night tonight. He did sleep all day after the ROP test, but even so he is still sleeping through the night. 🤞 💤
🙏❤️🙏❤️🙏
James gained weight, weighing in at 3490 grams (7lb 11oz). We had originally scheduled the trach change for 3am but when the time came the notes for some reason said that the ENT group already changed the trach today. That did not happen. So we have to wait until morning to verify that it didn't happen. Now we change James' trach on Wednesdays? 🏩
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com
Comments
Post a Comment