Day 131 - Lots of Photos, Outfit Changes, & a Kidney Ultrasound

Monday, May 10th, 2021..... May 10th?!?

James had a rough night and busy morning. 

12:45am - Mom went to sleep... 

2:30am - 3:15am ...For less than 2 hours. Mom heard James make a noise. Ended up having a wet diaper. Since he was up Mom did Trach care with the RT and then G-tube care with the RN. He ended up having a rainout in his circuit (when condensation builds up and floods his trach). This caused James to desat and brady. 

This is probably the most dangerous thing that can happen in the middle of the night. By the time alarms go off it could be too late. In one of Mom's trach groups, she read about how yesterday (Mother's Day) a Mom who does not have Home Health nursing had to do CPR on her baby boy and ended up getting a helicopter flight to a Children's hospital. He had aspirated water from the circuit. She normally would have an alarm set to go off every 2 hours to empty the water, but she didn't wake up this time. She asked the group how to deal with the high anxiety she now has after doing CPR and reviving him. Sounds like this is just something you have to be prepared to do and handle. 😱

3:30am - 4:15am Was going up and down on his oxygen for the last 15 minutes. James was irritated and fussing because he was hot. Mom calmed him down and readjusted his bedding. Mom asked an RN if we could bump up his FiO2 since he was drifting; increased to 40. 

4:45am - 5:30am Setting off PEAK alarm, ending up bradying and desating. Mom changed his diaper. Trying to having a bowel movement causing him to bear down, turn purple, and hold his breath. 

5:30am Blood gas on James. Then maybe sleep? Let's try this again... 

Result: Blood gas was at 74.3 a decrease from Thursday's 82.6.

7:00am PEAK alarm and desat welcoming in shift change. Ok, Mom is up! She changed his diaper and in the middle of that he had his bowel movement finally. Maybe now James will sleep a little more. But for Mom she will be greeted by Therapists and Doctors all morning, it's Monday! 

7:45am - 8:15am Pump and Dump 😭

8:15am - 8:30am Nap

8:30am BPD episode 

9:00am Hands on and hanging 1st Feed

9:15am Doctor's Bedside report - only change was that they increased his feeds to 105ml

9:30am Speech Therapy and Mom held for 1 hour 

10:30am - 11:30am Nap 

11:30am Bedside Kidney Ultrasound - She accidentally disconnected his ventilator while reaching to plug in her ultrasound machine. 🤦‍♀️

Result: Good; NEGATIVE BILATERAL RENAL SONOGRAM

12:00pm Need to change his onesie that is covered in ultrasound jelly. 🤦‍♀️ James cut himself again on his face. Mom files his nails often but maybe needs to do this daily?! Poor baby.

1:00pm James sleeping through his feed. Suckling in his sleep. Adorable. Mom is pumping and dumping again.

Mom held James in the late afternoon to try and keep him awake sitting up. He was not having it. He just wanted to snuggle and sleep.

Had a relatively peaceful evening and night with only a handful of episodes.

Farrell Feeding Bag

Mom is posting the directions here on how to use a Farrell Feeding Bag in case someone wants to Google "Farrell Bag Directions" hopefully this will come up. I know they aren't easy to find on the Google. Several Mom's in the Trach FB Group have asked for these. This system is an empty bag that is connected to his feed. It allows the baby to push back allowing air to vent through. Eventually the feed will come back down into the stomach. This is used with a G-tube.

And just to reiterate, James does not eat by mouth yet. He gets all of his food through his G-tube, similar to an OG-tube (oral) or NG-tube (nasal) which he has had previously. This is common for all Trach babies and kids. 

He has been doing well with oral stimulation while he is feeding. He still needs to learn how to suck, breathe, and swallow. The rule is he needs to be able to have taken 10mls before getting a bottle. That's the goal!

Please note step 1 is incorrect. It is suggested that the Farrell bag hangs higher than the Feed bag.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com