Ah .... Home!!!
We are home after another sleepless night. Last night I had considered staying home and leaving James on his own, but I'm glad that I toughed it out. James did not sleep well last night; he kept waking and crying, often pulling on his G-tube, making us wonder if it was his stomach bothering him. The crying would bring on the coughing, and so it was a bit of a cycle for a while. We had put James on a 3 hour feeding schedule, but held off on that once he started acting up. He ended up sleeping with me on my so-called bed ... for anyone who's seen how big that is, you can well imagine how comfortable it was. Early morning I was able to move him back into his own bed and he slept good for several hours.
James' temps were down today, in the 37-37.4 area and his SATS were back up to 98%. Since he wasn't getting worse we were well and ready to head on home. The doctors are extremely impressed with how well his lungs have done throughout this whole episode. Para-Influenza 3 is a respiratory virus usually result in much more breathing difficulties. In connection with his Intersitial Lung Disease this is certainly a positive thing. We will have to continue to work on his feeding schedule to see what works best in order to get him back on track. James was admitted at 10.4kg (22lb 15oz) and discharged at 9.6kg ( 21lbs 2.5oz). We realized that James has lost weight, but did not think he had lost that much. This will be a huge hurdle for him to get back on track, first to get his feeds back up to the correct volume and back to the old speed and then to make sure he actually puts on weight. It is discouraging to see him fall so far behind again, but hopefully he'll bounce back quickly once on proper feeds again. The challenge is to get him back onto full feeds without causing the diarrhea to come back.
Right now sleep is top priority for all of us. The girls are still not home as I'm not feeling well just yet. Hopefully tonight I can good a good night sleep, and with a good nap tomorrow and we'll be ready to conquer the world again. Tomorrow James has a pediatrician appointment, but I don't think this will accomplish much. We'll likely have to wait until the new year to make plans for the port, endoscopy and g-tube change.
Daddy entertaining James by
playing with his bed
James' temps were down today, in the 37-37.4 area and his SATS were back up to 98%. Since he wasn't getting worse we were well and ready to head on home. The doctors are extremely impressed with how well his lungs have done throughout this whole episode. Para-Influenza 3 is a respiratory virus usually result in much more breathing difficulties. In connection with his Intersitial Lung Disease this is certainly a positive thing. We will have to continue to work on his feeding schedule to see what works best in order to get him back on track. James was admitted at 10.4kg (22lb 15oz) and discharged at 9.6kg ( 21lbs 2.5oz). We realized that James has lost weight, but did not think he had lost that much. This will be a huge hurdle for him to get back on track, first to get his feeds back up to the correct volume and back to the old speed and then to make sure he actually puts on weight. It is discouraging to see him fall so far behind again, but hopefully he'll bounce back quickly once on proper feeds again. The challenge is to get him back onto full feeds without causing the diarrhea to come back.
Right now sleep is top priority for all of us. The girls are still not home as I'm not feeling well just yet. Hopefully tonight I can good a good night sleep, and with a good nap tomorrow and we'll be ready to conquer the world again. Tomorrow James has a pediatrician appointment, but I don't think this will accomplish much. We'll likely have to wait until the new year to make plans for the port, endoscopy and g-tube change.
Daddy entertaining James by
playing with his bed
"Help, let me out of here!!"
Playing by the window
3 comments:
Yay! Glad to hear you're home! May you have a wonderfully long and peaceful sleep and get your strength back!
I have slept on those "beds" and can fully sympathize! Not a pleasant experience...
Happy sleeping Steph!! you always did like your sleep so I cant imagine how you are functioning on so little.
Glad you are back at home.
I still love my sleep .... don't we all!! :) But reality is it's just not possible anymore. I'm happy if I get to bed before midnight ... and there's for sure no more of that sleeping to noon every day ... boy what a life back then. I was just busy storing up for the coming years ... haha, don't I wish it worked like that!! :)
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