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!
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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!
Update as of Tuesday, January 30th, 2024 Hey guys, If you are seeing this, thank you so much for being here. I feel like I got sucker punched in the stomach today. Summary They have found fluid building in the baby's chest with the latest ultrasound. They now need to monitor me weekly to see how quickly fluid is building up. If fluid builds up to much it will also endanger my health so if I have danger signs then I'll have to have the baby early, but the earlier I have him, the more at risk he is to not survive. So the timer is on. We want to get him as close to 37 weeks as possible which is the 3rd week of March at the earliest. Details Ok, so for those of you who are interested in some details, here we go - So, last Friday morning I saw the cardiologist. They saw the fluid around the lung and didn't think it was related to the heart. Upon further consultation of the cardiologists at Children's Hospital and my care team of 3 doctors at Maternal Fetal Medicine, it IS
3/13/24 @ 1:30pm Hey Guys, Things just got exciting real fast. I went in for a check for Lucas this morning and although his heart beat is strong, they wanted to see him moving around more and my fluid dropped to 2.5 from 3.7 on Monday. I received directions to get to UW Labor and Delivery which is where I am now and they just finished monitoring Lucas and filling me in that they advise doing a c-section in the next hour! So here we go people! I also wrote a blog post early this morning for anyone who wants to read it, cuz I'm writing this on my phone and it'll be hard to delete. I'll send pictures once can! Love you all! Update at 3:55pm Well my phone wouldn't send the email before the c-section so now you get pictures and everything. He was born at 2:27pm. 6lbs 1oz, 18.5 in long. He did very well, doctors say he looks good! 3/13/24 Wednesday @ 4am: Here's a post I'll keep updated as we lead up to Saturday in case anyone dec
Dear Family and Friends, Hello again! I am in a position of needing to ask for support and prayers again. What has started out as a common cold and a 5 day ICU stay to support Lucas' breathing has turned into a 2 week hospital stay and we have boomerang'd back into the ICU as of today. I'll put more details below for those interested, but basically I expected that he would be better after a week or so of hospital stay and now we are entering our 3rd week and it is clear I need to give up expectations and embrace this amazing opportunity to practice living in the present. Luckily it isn't hard to focus on holding little Lucas and bring my focus to gratitude for his little hands and feet and his soft head. I am also so humbled and grateful for those who have stepped up to help us with this current hospital stay! So, in an attempt to be organized - I shall 1. state why I called you all here 2. what we need in the upcoming week in case any of you are able and want to provi
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