Gaines had another pretty good day today. He is still on 2 liters at 100% and will probably be there most of the week. The doctor wants to give him plenty of time to get over last weekend's spell. He is also now on a daily dose of lasix...thank you very much. I've only been screaming this for how long now? Just kidding...kind of. I know the doctors know a LOT more about this than me but I just really feel like that's what he needs right now.
The plan is to try and wean Gaines down to 1 liter before he is released. He may still be released on 2 if he just won't go down anymore right now but I think we'd all feel better if he was at 1 liter. That way he would have a little wiggle room at home should he need it. The only other thing to do is to get him off the humidified air. Right now his air is humidified only to make it more comfortable for him to breathe...un-humidified air is very dry apparently. As his flow gets lower, humidified air becomes less of an issue so they will try and wean his flow some first.
Today's doctor told me that he didn't think it would be this week, and probably not the next but maybe after that. I take that to mean about 3 more weeks. I think they want to try and stabalize his feedings and medications as well as get him stable on whatever oxygen he needs right now. Pretty exciting.
I think that's about it for tonight. It's been a busy evening and I'm tired. Reed has been waking up at the crack of dawn (4:30 a.m. some days) and this morning was my turn with him. A friend of mine thinks he's part rooster. He's not crying or anything. Quite the opposite. He wakes up and is ready to start the day. Its hard to be upset with him because he's so sweet and happy but it makes for a very long day.
Please continue to keep Gaines in your prayers as we try and get through this home stretch (I pray that it is the home stretch). Please pray for his lungs and that he can handle one liter very soon. Also, please pray for patience for his mother...I am getting soooo tired of hospitals. I can't wait have my family under one roof.
Love to all,
Brittany
5 comments:
The home stretch! Yay!!!! You're almost there! Once Gaines gets home you'll see all kinds of improvement- they thrive so much more at home than in the hospital. And continue to trust your intuition- you're his MOM! Also, you may want to consider getting a humidifier for his oxygen at home, too. We left without one and quickly regretted it because Eli got so congested from the dry air. The home health companies offer them along with all the O2 supplies. Hang in there- he'll be home with you guys sooooooon!
Wow - look at the progress your little man has made! It seems like just yesterday that he was on his first flight... now, getting ready to come home, soon, riding a bike,.... the things he will do, the things he will see... it's amazing!
WOOHOO! How exciting to start getting closer to that light at the end of the tunnel. Good call on the Lasix too. ;) Continuing to keep everyone in our thoughts and prayers!
K, D, & J
PS - Excited for the game... GO HOKIES! ;)
We are praying hard for Gaines to tolerate 1 liter and to come home SOON! Hang in there and stay strong!
Lauren Hess
Very exciting to be in the Home Stretch. I can't even begin to imagine how sick of hospitals you must be. Especially now that you are home and your family is still not under one roof. I was fed up and I only had 3 months of NICU time. I'm glad they are giving you some wiggle room. I know it must be disapointing to have a goal of 1 liter instead of 2, but if wiggle room keeps him from having to be re-admitted than that's good. 4:30am is indeed quite early! Good thing he's happy. Can you get some black out curtains? Still praying!
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