Day 246 - Cutest Video Ever!
Thursday, September 2nd, 2021
Last night James did a 4-Hour LTV trial and did great! He also did really well sleeping through the majority of the night. This is great for James, now Mom and Dad just need to figure out how to get a few hours sleep in between handling his feeds, medications, suctioning, and managing the wet circuit.
Today we have one of our favorite day shift nurses in the PICU. It's very obvious that she cares for James, always stopping by when she is not assigned to him to check up on him, and goes out of her way to go above and beyond with him! Not to mention she is always trying to improve processes which in turn will help the hospital. Not everyone is like that, because we have had our fair share of layabout clock watchers. Some people use the excuse that the PICU is just so much more intense and busier than the NICU that's why they don't have time to spend with the patient. Well the fact is some nurses do and some nurses don't, and it's all the same job. Some can do an awful lot more in a shift than others.
At 9:00 a.m. James had blood work done and they were able to get it on the first try. The results look good and his electrolytes are fine.
Today Dad read James the giraffe book and Mom got some of the best video and pictures to date! See below.
🚩 Our DME supplier (durable medical equipment) ordered us the wrong size trachs. We need both a 3.5 for backup and a 3.0 for emergencies in case the 3.5 doesn't fit. James has a custom length trachs due to his bronchomalacia. Bronchomalacia is a term for weak cartilage in the walls of the bronchial tubes, often occurring in children under a day. Bronchomalacia means 'floppiness' of some part of the bronchi. So basically the DME supplier thought that the custom length did not matter, and probably just gave us whatever boxes they had laying around. Mind you these are $500 a piece, so we'd like to get the correct size. This is frustrating to already be dealing with this kind of careless attitude. If he doesn't have the additional length on his trach his trachea will not be opened all the way when he's breathing. Kind of a big deal!
Like we mentioned in yesterday's post we are taking things slow. In the afternoon James was put back onto the LTV and ended up staying on it for the rest of the night. No changes to vent settings, gi, or clonidine wean schedule.
On a side note we are continuing to bring in a breastmilk which is now from April. It's sad seeing the deep freezer get smaller and smaller in supply. At some point we will need to start him on 100% formula. Dad thinks that we have enough in the deep freezers make it to the end of the year when James turns 1 years old!! Crazy. Mom thinks that we will run out before then. We will see who made the best guess!
Comments
Post a Comment