Morning Update: so the blood gas that was done at 5am after his bronchospasm came back at 80! So another one was done this morning at 8am came back at 59.7, which is much better!
Here is a video of him at 4am after this Bronchospasm.
This morning a new primary doctor did an assessment on James. She also went over all of his notes with the previous doctor and got an update on last night.
James had a speech therapist stop by and had his first assessment. He did really well sitting up taking his pacifier. She put fresh breast milk on the tip and he went to town. Each time she gave him the pacifier with more milk on it he was more open to receiving it. He would open his mouth a little versus piercing his lips. He is learning! She said he sucked for about 19 times at the most before taking a break. He is still learning how to hold it in himself. We are going to make this a daily practice so we can get comfortable with sucking swallowing and breathing. The goal is to eventually get him to bottle feed.
Changes:
We're increasing his continuous night feeds from 22ml/hour to 24ml/hour. The goal to get to 28mls but we don't want him to spit up.
We are increasing his cuff size from 1.7ml-2ml.
He lost 10 grams and is now 3370g.
10:30pm Update: Another Bronchospasm, desat, and several bradys. 😢
1:30am-3:15am - Another Bronchospasm, desat, and brady that Mom handled by herself again. Mom suctioned him twice got out a lot of mucus, sat him up and gave him pats to change his state. Mind you she did all of this while in the middle of pumping, being hooked up to the hospital pump wall unit with wires that barely reached the crib. Around 2:45am, we did trach care and Mom assisted the RT with changing the gauze around his stoma.
3:30am: Again brady and desat. Mom went in the hall and let everyone know he needed help. Our nurse came in. Changed his massive diaper and that was all he needed. He caused his own spasm by being upset, so now it's becoming a behavioral thing. ☹️
It's frustrating to have no one come in while your baby is desating, bradying, and having loud alarms go off flashing. Yes, James has a new neighbor that looked like they were needing emergency surgery however there are over 10 nurses standing outside his room doing nothing and no one is even seeing him desat and brady...? It's not an understaffing issue, most are just observing what is happening nextdoor with their hands in their pockets. Some have actually come in the room just to grab supplies and walked right out. How horrible would it be to lose a 3.5 month old baby because everyone's attention is on another.
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
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! 😭😭😭 Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
Saturday, August 21st, 2021 Mom and Dad finished up their Room-In on Saturday. Everything went really well! The hardest part is going to be preparing his feeds and making sure that those are given on time along with the meds. As soon as you think you have a break from giving him a med you realize that you now need to prepare fortified breastmilk. Preparing fortified breast milk includes thawing out frozen breast milk moving it to the fridge then taking the thawed breast milk mixing it with measured out Similac Advance powder (180ml of breastmilk to a teaspoon of formula). He only needs 130ml though for 4 hours because the CDC regulation is that breast milk can only be out for 4 hours at a time. Currently his continuous feeding schedule is 32 ml an hour so that is 32 x 4 = 128ml (rounded to 130ml). But because we have to fortify 180 ML at a time there is roughly 50 ml left in a bottle we put back in the fridge until the next feeding. Mom and Dad gave James a bath and his teeny little tu...
Monday, August 2nd, 2021 Weight : 7140 grams (15lb 11oz) Height: 22.5 inches Couple of upsetting things overnight: Alarms going off and nurse is not coming in to check on him We wasted a ton more breast milk again I just dumping full bottles into the feed bag without measuring. At one point there was 8 hours worth of milk in the bag. Breastmilk isn't supposed to be out more than 4 hours. Trying to do x-rays in the middle of the night even though mom has already communicated that James is a hands off during the night. He actually text said "oh yeah I said the order says 8:00 a.m." 🤦🏻♀️ We had a new nurse today, new to us and new to nursing. She was nice. So James ended up getting an x-ray of both wrist and his lungs during Day Shift. Wrist x-ray results: FINDINGS: Zone of provisional calcification in the distal ulna and radius is less well-defined than 1 months ago and distal radial ulnar metaphysis appears slightly frayed. No cupping or fracture. Slight deformity of...
VERY UPSETTING!!!
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