Daily Update: Week 3 (updated Wednesday 5/22)

 Hello Family and Friends,

Here we are on Wednesday, I'll try to summarize what all is going on for easy updates for all those checking!

Respiratory Support: Lucas is on a High Flow of air at a level of 2L/min (which is the lowest setting). They let him hang out there today and not change anything.

Feeding Tube: Lucas has had a feeding tube his whole life. However they needed to advance it past his stomach to have the tube deliver food directly into his intestines since he's been here. If there is food in his stomach while he's on the High Flow support then it has a chance of making him aspirate liquid into his lungs. Now that Lucas has been turned down to the lowest setting of High Flow, they feel comfortable seeing how he might tolerate moving the tube.

Last Friday they moved the tube from his intestines into his stomach in preparation for being discharged to go home, however Saturday he needed more respiratory support and they turned up his High Flow so they don't want to go too fast, but it is the plan to try it again.

There are now some questions around why he needed to go to the ICU on Saturday when he was looking really good the day before. The prevailing theory is that there is something going on withe reflux or aspiration (which are both common in infants with low tone, such as with down syndrome) and that is what had him start breathing harder and be overall more fussy and agitated on Saturday leading to his admittance to the ICU.

Going Home: 

  ⃞ Wean him off the High Flow

  ⃞ Move the feeding tube from intestines to his stomach

  ⃞ Do Swallow study (?)

The doctors don't really have any more answers to do anything different as we try to wean him again, but as more time passes he gets stronger and can hopefully tolerate what he needs to tolerate to handle the changes needed to go home. The one thing we can try is a swallow study - which is having someone come by and look at how he is swallowing to see if there are any indications that point more obvious to some kind of issues swallowing that could give us answers. So we're going to do a swallow study, then move his tube to his stomach, then take him off the air. Then we can go home!!!

Lung Disease

There was mention of Lung Disease yesterday, but the doctors in the huddle today clarified that anything regarding the lungs not being healthy are an aspect of Lung Disease in general so the mention of Lung Disease isn't automatically anything serious. The considerations of him possibly aspirating or having reflux would be aspects of lung disease. Some pulmonary specialist came by yesterday to ask me a bunch of questions and evaluate him and they didn't think he warranted getting a CT scan to identify anything more serious than the reflux and aspirations. So that's all good news. We can cross anything more serious with the lungs off our list for now.

How did he do today:

Lucas was really wiggly today, not sure what was going on, but he wouldn't settle down. We thought he was trying to get out a poop because he hasn't pooped in a day and a half. Gave him a suppository and he pooped twice, still didn't settle down, gave him some anti-gas drops, still wiggly, then some Tylenol, that seemed to help him settle down a bit. Now as I write this, he's been wiggly since 12:30pm and it's 9pm now. He's not breathing super heavy, but something is bothering him. Not enough to cry, but enough to wiggle around a lot.

     

How is Mommy Doing?

A few people have been asking how I'm doing. I know this is a lot and I spoke to that a bit a few posts ago, but I am doing ok. Not great as you can imagine, but not terrible by any means. I am happy to be able to be the one to be here with Lucas to talk with the doctors and be the point person. I wouldn't have that any other way and I had a chance to talk with 2 friends today which was so helpful. I can't seem to hold a phone conversations because of the interruptions and holding Lucas, but it was lovely to talk through some of this stuff with friends. I think by the time I get home I'll be ready to collapse on my own bed and cry a little and decompress and try to process all this, but I seem to have found my groove in remaining present and being diligent enough to ask good questions of the doctors, even asserting my opinion at times. #NurseMommy ☺I've been able to remain in the present and be thankful for each day and not get too caught up in feelings of despair or frustration. I'm seeing this as an adventure to discover what Lucas needs and support him however he needs. So thank you all for your thoughts, concerns and support. If any of you would like to stop by, especially over the long weekend, feel free! :)

Special Thanks

Thank you to everyone who has watched Lucas so I can go home:

Rachel, Sue, Becca, Kim & Monica

Thank you to everyone who has made us meals and dropped them off at the house:

Kimberly & Marty

Thank you to everyone who has helped watch the girls or had a play date:

Grandma, Michele, Jenni & Nora

Thank you to everyone who has come to visit me and bring me food:

Sarah, Caleb & Stacie