Day 255 - First Full Day Home

Saturday, September 11th, 2021

Mom and Dad had their first full day home with James. It has been a whirlwind! Mom slept downstairs on an air mattress (better than a chair) and took night shift. James is a pretty good sleeper waking only a few times throughout the night; however, there are feeds and meds around the clock which is the reason for very little sleep. Between the two of us we are constantly doing something. Just a few of the things we're busy doing...

1. Feeds - This involves making sure enough (but not too much) breastmilk is thawing every 4 hours. Grabbing bottles from our deep freezer in the garages, and moving them into our medical frig inside the house to thaw. James is currently at 37ml/hour so since breastmilk can be out for 4 hours according to the CDC we give him 150ml in his feeding bag which pumps this into his J-tube slowly over 4 hours. 
2. Meds - Not only giving James his medications when they are scheduled which right now is (6am, 9am, 2pm, 3pm, 9pm, 10pm, 3am), but prepping the medication in the syringes so that they are ready at that time. All of his meds are either given in his J-tube, in his feed bag, or via inhalation with a nebulizer treatment.
3. Diapers, suctioning, consoling and G-tube care - Changing diapers (wow, does he go through them quickly!), consoling (typically upset because he needs to be suctioned), suctioning his trach and flushing with a saline, and cleaning his GJ stoma then protecting with aquaphor and using a split gauze to make sure bile isn't sitting on his skin.
4. Managing the syringes is super time consuming (cleaning, drying, sterilizing, putting back together, organizing into the correct sized bins). We started collecting our stash of used syringes from the PICU, since you don't get any through insurance. We have a ton now so we don't have to worry about having to clean them daily. Eventually the numbers will wear off so that is the reason we have so many.
5. Trach care is daily for James. This is a nightly process along with his bath that begins around 8pm to get James ready for bed. We change the ties daily and the trach weekly.
6. Filling the heater with distilled water about 4x a day.
7. Staying on top of changing out things like his: pulse ox, circuit, in-line ballard, filters (for 4 different machines), tubing (oxygen and suction), feed bags and farrell bags. For most things, we actually have no idea how often these things should be changed. You would think that there would be a standard rule for health reasons, but no it's different for everyone since it's just based on how many insurance will actually provide you. 🤯 For example, we only get 1 circuit a month that most people change out weekly. We also only get 1 ventilator filter a month that others also get weekly. Did we mention we have Cigna?

Dad and Mom need to make sure that someone always has their eye on James. Eating, showers, even using the restroom, have to be announced so that you have coverage. As soon as you become comfortable that's when mistakes are made. These mistakes can be deadly.

Tomorrow we have 2 "meet and greets" with home health nurses from the staffing agency for possible help. We will also be posting on social media trying to find our own nurses. Dad has already posted something at UT in hopes to get some interested students. We had talked to the PICU about them being trained by the hospital. Hoping to work out internship credits or something. 🤞 We are also willing to train.

Any LPNs or RNs that are interested can contact us! We also would be willing to pay top dollar (for a couple of hours) to a select few of our favorite RNs and RTs from the hospital to babysit. 👶🏻

Where's waldo?

P.S. If you read the blog and are suporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. It's super easy. You can do it!