Day 196 - Trach Change for Mr. Air Jordan

July 14, 2021

Wednesday, July 14th, 2021

James vomited again at 9:30am. Mom thinks it has to do with the farrell bag being clamped due to medication. He has a continuous feed every night from 6:00 p.m. to 6:00 a.m. which is run 40 ml/hour. During the day he has bolus feeds at 8:00 a.m., 12:00 p.m., 4:00 p.m. which are run over 45 minutes. So the issue is his first bolus feeds ends at 8:45am and then at 9:00 a.m. he has meds due. He has a full belly from a whole night of continuous feeds, then gets a very large bolus feed where he is clamped right afterwards.

Updated Measurements:

Length 51.8cm
Head Circumference: 40.6cm
Abdominal: 46cm

Updates to medications:

We will start giving him miralax in the morning and then milk of magnesia in the evening for constipation.

🤳 Mom spent a great deal of time on the phone with Social Security. Did you hear? We got a letter in the mail that said they received return mail and therefore are discontinuing payments. We have no issue with our mailing address or our mailbox. Mom thinks they just do this to see who will actually take the time to file an appeal to be reinstated. Mind you these are $30/month checks but overall having James cancelled from SS will cause tons of problems for us later on even though we will not qualify for Social Security once we are discharged. If you have a over $1,000 in your checking account, savings account, 401k, etc. you are disqualified. However it's still important that you apply so that it is noted that your medically complex baby was denied Social Security.

In the evening Dad was able to relieve Mom for 3 hours. Mom spent most of that time watching YouTube videos in a Target parking lot trying to understand the differences between the LTV ventilator and the Trilogy ventilator. Having uninterrupted time is crucial in order to stay on top of research and learning. And there is no such thing as uninterrupted time in the PICU.

Mom ended up changing the trach during night shift with our RN who used to work at CHOP (Children's Hospital of Philadelphia) within the BPD ward. She has a passion for trach and vent kids. It is interesting how many different ways there are to do a trach care. Everybody has their preferences. It's important that Mom and Dad feel comfortable and confident with the way they will handle care with James. We think we've found our groove.