Thank you all for joining us for another episode of "What does Lucas need to get better?". I'm your host, Christine Martincic aka Nurse Mommy.
We had some excitement over the weekend, Lucas was right on the cusp of being discharged (or so we thought), when he seemed to have heavier breathing on and off on Saturday. They turned his High Flow not off, but up from 2L/min to 4L/min midmorning and by 5pm they were looking him over, turning his Flow up to 8L/min and eventually admitting him back to the ICU by the end of the day. What is the culprit of the heavy breathing? do you ask... bum bum bum - no one knows for sure!
Popular guesses include:
- Constipation/Gas - Moving Feeding Tube (from ND going straight into his intestines to NG into his stomach) - Aspirations (because of his low tone b/c of down syndrome he's having food go up from his stomach into his lungs) - He just needs to recover more from the virus he had and because of all of the above and the fact that he's just small, down syndrome so probably airways on the smaller side, low tone, and his heart defects may be a factor.
Anyway, we join our little Lucas back on "the floor"! After a weekend stay in the ICU, they weaned him off the 8L/min High Flow down to 3L/min and transferred him this morning.
We have a special treat for you today, we have exclusive footage of Lucas showing off his wiggle skills. Despite the nurses efforts to keep him in his "nest" in his bed and even the best of swaddling, he manages to wiggle down and out.
Comments from nurses and his mom after just a few minutes of wiggling out of his containments include, "Lucas! what have you done?!" and "Where do you think you're going, little man!"
For him to be discharged, he'll need to come off of the High Flow support and move his feeding tube into his stomach again and make sure he doesn't need increased respiratory support when they make that change.
Tune in next time for the results of a swallow study that will rule out any aspirations and also clear him of possible chronic aspirations and pulmonary hypertension!
Check back here for your exclusive DAILY UPDATES on Lucas' antics and adventures @ Children's Hospital and watch your e-mails for weekly updates and highlights!
The Family sends their sincere thanks to all who have volunteered their help. They are covered with help through Thursday this week! Stay Tuned for updates and if you are just joining us, click the Logo below to offer Support!
Day 2 - May 21st: Tuesday
I was in a weird mood yesterday, feeling like this whole experience at the hospital certainly seems to be playing out like a movie or TV show with the twists and turns of each new piece of news adding intrigue to the tale, but I don't think I have the gumption to keep that level of drama going. 😏
Today's updates certainly do not disappoint.
Lucas has progress to report - they reduced his High Flow from 3L/min down to 2L/min (which is the lowest setting before they would turn it off to see how he breaths on his own).
Every morning the doctors have a huddle to discuss care and there were a few doctors from cardiac regarding his heart status and from the Echo Cardiogram he had of his heart yesterday, they could see that the pressure in the right side of his heart was certainly elevated. They suggested that they have someone from pulmonary check out his lungs. He hasn't had anyone evaluate his lungs, but now he's got a few factors that have the doctors wonder if he might be at risk for some level of lung disease.
So this week's plan is to have Lucas evaluated for a swallow study to see if he is aspirating (which is getting fluid into his lungs from his feeds b/c of reflux) & get a CT scan of his lungs to see if there are some issues there and one of those things may illuminate a piece to his puzzle that explains why he needed the extra respiratory support on Saturday.
In the mean time, they can definitely try him on room air (off the High Flow) to see how he does which gets him closer to discharge. Once he is off High Flow then they can move his feeding tube from his intestines to his stomach and then we can go home! I expect that we'll be here til the end of the weekend so we'll see how these things go this week.
Lucas did very well on 2L/min of High Flow and rested well, getting the sleep he needs to recover. Thank you for your thoughts and prayers as we continue this journey!
One a side note, we've had our own room thus far and he has recovered enough that they put us in a room with another patient (a double room). Our roommate is a sweet 3 year old girl who just had her 3rd heart surgery and her mom is with her! I just met them today and the mom was very encouraging, everyone continues to comment on how stinking cute Lucas is, and we'll look forward to all of us recovering!
Hello Family and Friends, I'll send out an e-mail this morning and continue to update this post as we go along with Lucas' recovery so feel free to check back here if you wonder how he's doing. 😊 I can kick of day 1 of recovery to say he's doing so very well! I went home last night and didn't realize how tired I was until I got there and couldn't keep my eyes open! I slept so hard and throughout the night, feel very energized this morning. I also listened something by Sr. Miriam Hedlund about love and healing and allowed myself to cry all the way into the hospital which got some much needed energy out. Pressing into love more profoundly has been so transformational for me in the last few months navigating all this helping me to simply BE with what is happening right now instead of going off on tangents in my head worrying about things and feeling bad for being detached or needing to cope. I am buzzing with delight as I am now able to become a conduit of GOOD NE...
Hey All, It's me again. Lucas was doing well recovering at home from his cold and here we are again. 3 It's Friday 5/2 and I brought him into the ER around 8:30pm because he had been breathing pretty hard, fast and with retractions since 7:30pm. Nothing has been out of the ordinary at home so, not sure at this point what is going on. They suctioned him, took a chest xray and got a swab to treat for influenza b and covid. They tried giving him albuterol and when that didn't seem to help they started him on hiflow. His breathing has calmed down a bit but not completely. Now that he is on hiflow he'll definitely be admitted. It's about 2am on 5/3/25 as I write this (still in the ER) and they got the chest xray back and he has edema in his lungs. The nurse practitioner who has been consulting with the team for updates told me that she's not concerned with with amount of fluid, it's not pneumonia, but looks patchy and likely from a new virus he ma...
---------------------------------------------updates below--------------------------------------------------- Hello family and friends, Surgery day is here. I woke up at 4:15am and got to the hospital at 6am to check Lucas in. We got taken back to get vitals and talk with the Surgeons, nurses and anesthesiologist and they took Lucas back to begin his pre-operation stuff. My friend Louise is with me, we left the hospital around 7:30am. They said it would take about 1hr-1.5hrs until he would actually be in surgery. They gave me a cell phone to get updates on, but clarified that it may mostly be that the surgery has started and that it is finished. No news is good news. We just heard that the surgery started at 9:16am! The surgery will take 4 hours at the minimum. They will test the repair once complete and if they see anything that needs additional attention, they could go back in and it could take another 2 hours. I'll post updates on here if you get curious and I'll send out...
Comments
Post a Comment