Day 126 - New Custom Trach & Unflushable Scalp IV

Wednesday, May 5th, 2021

Today our primary nurse was floated again. Yeah... So what is the purpose of signing a contract for primary nursing? 🙄 We maybe have her once a week... Anyways, we ended up having an excellent new nurse that we would love to have again. Could we please have some consistency? Or at least just give us the good nurses. 😉

Changes and today's events:

  • Stopped all diuretics
  • Increased calories by changing one of the feeds from breastmilk to formula. Right now he eats every 4 hours (6x a day) at 9:00, 1:00, 5:00. So now 3 of those will be breastmilk and 3 will be formula. We are also changing the formula to Sim Neosure from Sim Special Care.
  • Weighed-in at 4,115 grams.
  • James had time in the swing.
  • We asked PT and Speech to come by tomorrow since he had a rough night.
  • James' new Trach came in! The ENT Doctor came by to change it out and do a scope. She let Mom look through the scope at the carina and see the left and right main bronchus. James does have a little tracheomalacia. The new longer trach should help with that. James has a 3.5 Pedi Bovina Flex Custom (45mm length). Currently his Emergency Trach is a 3.0 Pedi Bovina Flex (39mm). Tracheomalacia (tray key oh mah LAY she ah) means that the walls of the windpipe (trachea) collapse (fall in on themselves). This happens because the walls of the windpipe are weak. The whole windpipe can be affected, or only a short piece of it. Overall James seems to really like his new trach. His color looks good and he seems more restful.
  • They were able to get a urine catheter finally on the 4th attempt with a Nurse Practitioner. We will wait to see how this urine culture looks!
  • James' scalp IV did not flush during evening hands on. Since he still has 2 days of antibiotics left they will need to place another IV tomorrow for his 3pm meds.
  • He gets memorized by the reflection of lights in the ceiling. Photo below.



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