Loving Lucas - The Journey of Our Little Man with Down Syndrome

Update: 5/14/25 (Day 5) - They took Lucas off high flow last night and he looks good this morning. They also took his blood and his kidney function looks good. So we get to go home! They want to check his blood again on Friday to be absolutely sure that his kidneys are still functioning well, but we can do that out of the hospital. Thank goodness! Update: 5/13/25 (Day 4) - There is nothing concerning on the echo, it looks really similar to the last one he had in March. So the plan is to continue to wean Lucas off the high flow support he's getting now (which is minimal). He will be weaned off completely by tomorrow morning. The other piece is to see how much diuretics he needs to be comfortable until his surgery. They have him on Lasix twice a day and have started hydrochlorothiazide to see if that gives him the last boost he needs. If he continues to look good and his blood work comes back good going into Thursday when we can talk about going home. Looks like we're seeing the ...

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...