Day 14 - Ride the Coaster

1/13/21 - Wednesday

Morning:  lots of little things adding up to be concerning. 

• higher temperatures yesterday but stabilized since last night 
• Vomited feed this morning so needs to give his belly a break 
• CBC lab work showed shifts in numbers that COULD be signs of an infection - Blood and urine culture still pending - will come back in 1-2 days 
• Started Gentamicine and Vancomycine antibiotics (every 18 hours and 36 hours)
• CO2 level went from 40-50 up to 60 this morning.  Will get another check shortly. FIO2 at 47% right now. 

Put in an IV into his ankle - right now he’s getting starter TPN and tonight will get full TPN for approx 2 days and then ween back on the feed starting at base line again to see how he tolerates. Still getting his caffeine and morphine through the IV. 

Update on speaking with Social Security Office:

Waited for someone to call us for our 9:15am scheduled phone appointment. No one called. Called several times, waited on hold forever, and even used a bot called Get Human that connected us through. Eventually spoke to someone who said that they have up to a whole hour to call us. Well 10:15am passed and we still didn't hear from anyone. We did the same thing again with calling from several numbers and waiting. Talked to a second person who said that someone would give us a call at some time today from the local office. Very frustrating. 

Hours later we received a call from the local office asking us ridiculous questions like, "When will James be coming home?". This is all just to see if he qualifies for Medicaid. If not, we were informed by one of the Nurses and Case Managers that these bills could be upwards of a million dollars. 

After that phone call we were instructed to call our NICU social worker and give her the local Social Security Case Manager's information. This way they can send over all of James's medical records directly. Now we just wait to hear back.

Evening: Next blood gas is at 10pm. The CO2 should lower.  They needed to adjust his oxygen tube a bit. Why? ... well, James and I were having a heart to heart chat about the new books I’m going to read to him and how well he’s doing ... then WHAM!  Like a movie, his heart rate dropped to 60 and 4 nurses ran into the room to check what happened. Looks like the cuff was slightly loose on his little foot and it slipped out of place or the chest pad was loose or a little excess condessation got into his tube. Either way. False alarm!  But dang... the staff was on it immediately!  Now I need a heart monitor. 🤦‍♂️

Overall, James is calm and relaxed. He’s sucking on his tube and is as cute as can be. I’m falling in love with this little guy the more time I spend with him. ❤️ 

James weighed in at 680g tonight. He also went pee-pee on his blankie during his changing, so we had to change it. I also got to help with his mouth swab for the first time. I was a great helper tonight...and a nervous wreck. 😬