Updated 8/2 2pm: Recovery & Home!

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 NEWS around Lucas as opposed to the numerous hospital stays and surgery delays that have happened recently. The nurse gave me her report when I walked in this morning and couldn't say enough about how well Lucas is doing. It's rare for a kid to not need blood pressure medication after a procedure like this and he hasn't needed any.

Allow me to summarize all the support they have given him because as these things are removed it gets him closer to coming home and is an indication of the progress of his recovery:

Coming out of surgery he had the following:

- Breathing Tube (in his nose) he was doing well and didn't need assistance breathing so that came out yesterday a couple hours after surgery before I left the hospital

- a central IV line: this is in his neck and gives them access to administer necessary medications directly into his heart and he is receiving his IV fluids through here

- peripheral IV lines: he has 2 lines in his right and left hands

- chest tube: this drains off any extra fluid or blood that the body normally generates after a surgery like this, it is minimal now and will likely be taken out tomorrow.

- pacing wires: they are connected to his heart ready to support him if his heart needed support if he had arrythmia. he hasn't needed those, they are disconnected now and will come out when they take out his chest tube tomorrow.

- catheter: for urine which was taken out last night

I think that covers it. Everything in green is already out. The central IV line in his neck can come out today. The chest tube and pacing wires tomorrow. He'll be much more comfortable once all that is out and we'll likely move to the floor tomorrow so that we can continue the recovery.

Lucas is completely off any sedation and I can tell you that he recently just woke up and I was able to comfort him and it wasn't long that he wanted to sit up and he is comfortable sitting and playing with his toy! Just amazing! ha ha

I hope his progress brings you as much delight as it does to me! We love you all and please feel free to return here for updates. They initially told me to plan on at least 10 days in the hospital, so we'll see how much time he needs. I'll e-mail again once we are discharged going home!

  

Update 7/30 Noon: They just took the neck IV line out around 11am. Lucas was really active moving around and just went down for a nap, so one more thing out!

Got all this stuff off!

Update 7/31 8am:

Fernando and the girls came by last night to see Lucas for themselves. He was awake and happy to see them. 🙂 

We had a not great night for sleeping and comfort. I'm excited for today because he's supposed to get out the chest tube, pacing wires, and the iv on his right hand which would just leave the iv on his left hand to give meds through. It'll be so much more comfortable. We're also on track to be moved out of the ICU today which will be just less monitoring and more relaxed which will be more comfortable too!

They originally said that we should expect to be in the hospital for at least 10 days so it'll be nice if right at the 10 day mark we can be discharged! 🙂

Update 7/31 Noon: I just helped the nurses remove his chest tube, pacing wires, and line in his right hand that had a board on it to stabilize it that was an arterial line taking a real time blood pressure.

They gave him some drugs to relax him, but he didn't even cry once! It's amazing to not have him attached to a bunch of stuff!

This all means he is super stable, doesn't need any support except for pain meds and after talking to the nurses it also means that he may be able to go home even this weekend! My goodness the good news just keeps coming! Lucas is doing so well, so strong, I'm so grateful.

 

Update 7/31 8pm: So today has been a lot of waiting. We waited a fair bit for him to get everything out and then my friend Monica came to visit for a few hours and we waited until they had a room for us on the floor. I was very eager to get out of the ICU and into a more relaxed environment. I forgot that going to the floor can sometimes mean that you share a room with someone. So on the other side of the curtain is what sounds like a little infant.

It is good to make progress so quickly though. It's really hard to believe that he is recovering so quickly. We could literally be out of here and at home super comfortable in just a few days.

Once they got everything out I realized I could actually dress him because there weren't so many cords that I have to work around so I'll include some pictures because he just looks so great! We also had some silly times goofing around, he's just so stinking cute. 😊😁

Good night everyone!

Update 8/1 1pm: I've been waiting to talk to a doctor this morning to get the official word on where we stand and what discharge looks like. All the nurses have said he looks really good.

They finally came by around Noon. To discharge Lucas needs to:

- remove some dressings over where his chest tube was and other places

- get an EKG

- get an Echo

- transition his meds he is getting through IV to give him through his ND feeding tube

And we can do all that today!

They need to get one more xray in the morning tomorrow to make sure everything looks good and then we could go home tomorrow! Of course, that's considering that all the tests they do today look good.

Just amazing. It would be so great to be able to sleep in our own bed tomorrow night! 😊😁😭😁

Updated 8/2 2pm: we made it home! All the tests looked great last night, they transitioned all his meds from IV to oral so I can give them through the feeding tube.

This morning we did an xray first thing to make sure everything looks good which it did. They changed the dressing on his incision then we were good to go!

Here he is as we are heading home! It has been a whirlwind for me. I think it's gonna take me a few days to decompress and process that his surgery actually happened and we're actually home already. 🙂

Thanks again to everyone for your thoughts, prayers, and who you are for us! I've been keeping you all in my prayers and hope you all are enjoying your summer! I feel like we'll need to think of starting up school again very soon!