Day 228: DISCHARGE DATE!!!
Late Night: Needed a suction around 12:30a and around 3:30am. James and Dad were able to sleep a good amount around that from 9:30p on after James got his evening cocktail of melatonin and other meds.
Seems like James is chewing on his secretions as he’s trying to go back to sleep, but James decided to stay awake from 4a until after shift change at 7am.
Early Morning: He had a poop filled diaper to begin the day and another one around lunch time.
Since his Gtube is going into a diaper to release the bile, they are tracking this total every 6 hours and every 24 hours. He had 286 ML of output in 24 hours from 7a-7a.
He has a weird wheezy cough. We will continue to monitor. Doesn’t seem like a concern at the moment.
Dad spoke with the doctor today. He's down to clamp the gtube line for one hour every 12 hours to start to see how James does. Mom mentioned that the gastric juice needs to flow down through the pylorus versus teaching it to come back out of the stoma, which the doctor agreed.
The doctor also said that James will have his methadone weened to once daily and is on pace to go home August 24th!!!
During the next few days, he will arrange for the room in for Mom and Dad. He will get the updated CPR info for James and get us trained. He will also look into getting a friend/family member medically trained after we are discharged (if needed).
At 10:45am. Clamped the gtube.
At 11:45am. Just unclamped. Nothing pushed back right away. It took a few seconds and slowly some came. Overall, seemed pretty good.
We will continue this 1 hour at night and during the day. 10:45p and 10:45a and since James didn't spit up this time, we can begin expanded that by an extra hour over the next few days.
Dad requested to change the Ballard line out since there were lots of secretions stuck at the top near the trach.
Lunchtime: Gtube doctor came in.
For his weight, 100-105 cals per day for feed is suggested. As James gains more weight, they will adjust. So, as of now, there's no max for feed, just an ideal range.
This doctor also agrees with Mom that clamping is a good idea and to build it to more hours is the goal. If James arches his back or pushes up due to discomfort, then open the clamp. Also if James is bitter tasting something, open clamp.
He explained the oil and acid are combining and creating the bubbles. The stomach needs compressed air and having it open all the time isn't great.
James has had some fussy behavioral patterns beginning. Kicking his feet. Flailing his arms. Silent cries. It’s been brought up if these are signs of Withdrawal due to the similar signs on a Watt scoring. Dad holds James, reads to him, or pats him and then he begins to calm down, making Dad think it’s a crave for attention more than withdrawal.
James has been exposed to Simple Songs on YouTube. They are precisely that .. simple songs. They are catchy and James seems to like them.
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| Mom holding in the evening. |
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| Mom asked one of the G-tube FB group Moms to send her some of these new stabilizers for the G-tubing. Medical Mamas are the most supportive! |
P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭
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