Luke continues to get a little worse... Although the nurses and doctors keep reminding me its expected and he will hopefully turn the corner today or tomorrow. Today is "Day 4" and overnight we had to begin using Luke's feeding tube as he had some difficulty with feeding and essentially getting comfortable enough after a feeding to go to sleep. Respiratory also was in twice overnight to do deep suctioning treatments where they put a tube through his nose and into his throat to suction out any mucous that might be sitting down there. The last time they did the treatment, it really helped to improve his oxygen saturation although it must be really uncomfortable because Luke really hates it and screamed both times. His eyes are red and watery and he seems more restless than before. Now that I've said that though, I just looked up at him and noticed that he's just fallen asleep.
Hope the poor guy gets better soon... It's heart wrenching to watch Luke go through this. One nurse did remind me though that this will be a great way for Luke to build some of his own immunity, although its certainly more stressful than it would be otherwise.
**Update**
Okay, so the doctors were just in for rounds and they didn't have anything new or surprising to share other than one of the residents described Luke's left lung as sounding "coarse"... This is the first I've heard anyone describe his lungs that way, so I'm going to follow up with his nurse later on this morning to ask her what that really means. Yesterday Luke's cardiologist mentioned that she wanted an echo completed before we are discharged and apparently it was ordered and its in the system so we don't have to worry about it being missed before we are released. Things seem to be pretty controlled and Luke is currently on .40 liters of oxygen... He needs to be off the oxygen and on room air for us to begin discussing being discharged.... Here's to hoping he's feeling better soon.
Thank you to Pat Winkleman for the beautiful blanket she made for Luke (and for the one she made for Matthew too). We brought it with us when we came up here on Saturday night and its been really nice to have something handmade from home! I used it on Saturday night when I needed an extra blanket to sleep since Luke had on a warm sleeper and one of our Halo Sleep Sacks (during those few precious hours that I was able to rest) and Luke has been using it for at least the last 30 hours or so.... All of the nurses have been giving us compliments on how nice and soft it is! I'm including a pic of him snuggled up with it...
Note to self: when the nurses placed the ng tube yesterday, they initially tried placing it in Luke's left nostril and had quite a bit of difficulty and ended up having to use the right side. When we meet with the Ear, Nose and Throat doctor next week, I want to ask him to take a good look at the left sided structures to make sure there isn't some sort of physical blockage that might normally be restricting some of his breathing and causing his baseline retractions.
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