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!
Friday, January 22nd Morning : James is tolerating his feed of 15 ML. Could use a bowel movement before 2pm, which will be 24 hours without one, or else they will be give James a suppository to help. His oxygen was at 47%, which is great progress. Amplitude at 30 and will get lowered to 29 today to see how James tolerates it. Pressure still at 15 until oxygen can get below 40%. Blood gas came back good. As of right now, James is doing well. He’s snuggled up nice and cozy today. . We also had someone make us a beautiful 3 week card with hand prints from James. ❤️ Evening: Baby James put on another 15g, now weighing in at 825g. He’s up to 16 ML of feed and tolerating it and will reach his max of 17 ML tonight, assuming he stays the course. His oxygen went down to 37% and amplitude down to 28. This is very great progress too. The suppository helped him with a large bowel movement, which it is common for these little babies to be slightly con...
Yesterday was James's first full day of Pre-K! For the past 2 months, James has only been able to do half days because of nap time; he required oxygen while sleeping. The great news is that James is now officially off oxygen completely! Also, we have worked with our GI team and the school nurses for them to be able to administer G-tube feeds at school, so he can stay a full day! It's so important to take the time to celebrate the wins because with a medically complex kid, there is always something to be working on! 👍🏻 From ventilator weaning to stopping the ventilator completely, to scheduling decannulation, to getting the trach stoma closed, to graduating from a GJ to a G-tube, to getting off of oxygen... It feels never-ending! That is just the medical side of it. There are also those normal things like walking, talking, eating... James has done great with those as well and cognitively he is acing everything! I recently saw a post from John Israel talking about perpetual dis...
VERY UPSETTING!!!
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