ER Visit 5/2/25 - Updated: Home on 5/6/25

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 may have picked up. It's what is making his lungs work harder right now. 

There's a drug he's been taking leading up to the surgery once a day called Lasix and it helps the body get rid of extra fluid. They are going to bump it up to twice a day and give him the support he needed until he recovers.

A cardiologist came by and confirmed what I heard about the edema. She said that with his heart concerns we will be admitted to the cardiology floor so they can keep a close eye on him. 

We're still waiting for the swab result to come back to confirm if and what virus he has.

Thanks for reading, sending love.

5/3/25 @ 3am Update: we are going to our room. He's been on the hiflow for a couple hours and he's still breathing fairly heavy, but a fraction of what it was when we came in so it is definitely helping. We're in River Floor 6 room 702 this time. The doctors on the cardiology floor where we are mentioned that 12 hours after he got hiflow they can begin to wean him off and see how he does.

Got Lucas settled and he was wide awake for a bit while we got moved and at around 4am he went to sleep so I am going to sleep as well.

love to all! I'll keep updating here as we go!

5/3/25 @ 9am Update: just talked to the doctors. So he has fluid in his Lungs (edema) not a terribly concerning amount but enough to certainly make him breathe harder which is not good.

The theories are:

1. heart related: heart is working harder because of the defects and over time more fluid can get into the lungs making them work harder. Luckily there is a medication he is already on (the Lasix) which helps the body get rid of excess fluid which they can definitely increase his dosage to relieve that extra fluid and he can keep the higher dosage until his heart surgery on 6/11. This would be good fix, would mean just be increasing his dose and monitoring him over the weekend, we could get discharged fairly quickly.

2. virus related: his rhinovirus is having a 2nd flare up and he needs support and more symptoms will present themselves later today indicating that is the case.

3. new virus related: he got a new virus and it's just getting started which is causing the extra fluid and we'll see more symptoms later today.

The consensus is that it's option #1 which is also good news because if it's a new or lingering virus, we might need to push back the surgery date again.

With option #1, then we could go home fairly quickly. Maybe a few days, just making sure the increased Lasix relieves his breathing and makes him more comfortable. So today is very much wait and see.

Thanks for all the messages! Lots of love!

5/4 @ 11am Update: It's hard to believe we're back in the hospital. I think I tend to keep my head down and just do what needed to be done. And here we are. 🙂

Anyway,  Lucas is stable. Still breathing just a bit harder that he does normally. They initially had him on 13L/m of the hiflow and they gave turned him down to 9L/m gradually. So today we'll see how much they can wean him off. 

I believe it's a matter of the Lasix doing it's job to reduce the fluid load on his lungs which will be more effective over time. And getting him weaned off the hiflow. If they can wean him down to about a 6 today. I think it's likely we could go home in a couple days, if he needs to go more slowly, we could easily be here til the end of the week.

On another note, we have Fernando's parents coming into town on Wednesday and Isabelle's first communion on Saturday morning at 10am. So I'll ask now. If anyone is available on Saturday from 8am-1pm so I can be there for her first communion for sure. Please let me know! Hopefully we won't be here that long, but just in case! Thank you! In the mean time,  feel free to reach out to Fernando or I if you can help watch the girls or do play dates or come watch Lucas at the hospital for a few hours. Every little bit helps!

5/5 @ 10am Update: Great news, now that it's the week the doctors have a more robust way of coming around and all the best doctors are doing rounds and looking at patients. I learned a lot this morning about Lucas' heart and what high flow does for him. Apparently it doesn't do much for him once it's been lowered to 9L/m which is 1 liter per lb. So they are very comfortable taking him off now.

They had been reducing the high flow from 9L/m to 3L/m overnight. So he can come off it now and it will just be a matter of waiting for the next 24 hours to make sure he looks good. He's not breathing as hard this morning either. So it looks likely we can go home tomorrow! ☺

5/6/25 @ 10pm Update: We're home! Lucas is going home with a higher dose of Lasix and about 5 weeks left until his heart surgery. Thank you so much for keeping us in your prayers! We are praying for you and your families and so grateful for your thoughts and prayers, for the wonderful nurses and doctors at Children's Hospital, and for those that reached out as we navigate Lucas' health needs. :)