Day 140 - Mom bagged James & G-tube out for 3rd time
Wednesday May 19th 2021
We switched from neonatal vent settings to pediatric vent settings because the tidal volume was limited 50. In order to do this switch we actually needed to switch out the vent and needed to disconnect James from the oxygen and provide manual ventilation through an an ambu bag. Mom got her first practice using an ambu bag. She did not want to just practice on him for the heck of it but since we were going to need to do it anyways this was a chance for her to feel how it would be in an emergency situation. It was not what she expected. You actually need to squeeze pretty firm and faster than you would think. She needed to use both hands at one point. Also it's good to know that your hands get tired in case you're ever in that situation.
Over the course of the day we spoke with our social worker, discharge coordinator, and a nurse practitioner from what will be our pediatrician after we leave the hospital called the complex care clinic. It was a lot of information and kind of overwhelming. We discussed what life would be like once at home, the whole process of getting the home vent set up, training on the home vent, what it would be like to transport James and all of his equipment up and down the stairs in our home, as well as getting him to appointments and therapies pretty often.
We live in a townhome (we rent). Currently our nursery is upstairs in the bedroom next to ours, and Dad has his office downstairs. If we decide to set James up in his nursery we will pretty much be banished to that room since getting up and down the stairs is a pretty big deal with James and all of the equipment (ventilator, heater, oxygen concentrator, suction machine, pulse ox monitor, etc). Mom has been stressing about this setup for weeks. There is a really good chance that we set up James in the living room downstairs and have Mom sleep on a mattress next to the crib. Yeah we probably won't be having company anytime soon. As soon as you come through the front door, welcome to our ICU!
James will need 24-hour supervision. Our insurance covers 100 days (16 hours/day). Home Health nursing has a pretty poor reputation and most moms will tell you that the staffing agencies won't be able to find you someone. So you cannot rely on them. Even if you do get a nurse scheduled with you a lot of times they don't show up. This is a horrible situation when you need to go to a doctor's appointment and the nurse doesn't show. James will need two people in the car with him one to drive and one to monitor his oxygen and heart rate in the back seat with him.
Mom ended up feeling pretty nauseous by the end of the day and Dad ended up taking her home so she could sleep. The body will let you know when it's been too much. Probably a combination of no sleep and anxiety. Night shift was going to be the same staff that James had for the last 2 nights, and our Primary in the morning so we were okay with taking the night off.
Unfortunately, James's G-Tube came out for a third time. The balloon popped again. We now think that these are part of a defective batch. Because it has only been 4 days since the last balloon popped. We have now gone through three in 17 days. The NICU actually doesn't have anymore right now. At home, our medical supply company will most likely only give us one of these a month. That means we would need to go to the ER every time this would happen in the future.
Below photos of a custom onesie by Aunt Robin and his bath that he wasn't too fond. He ended up getting a lot of love from everyone afterwards.
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