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Sunday, April 3, 2011

Not sure we can do this anymore.......

Last night was a very long night.  Joey was from screaming from 3am-7am, pretty much non- stop.  He no longer has a voice because of it and has started retracting again when he breaths.  We put him back on the oxygen and did more breathing treatments.   He gets so upset when we feed him; I am not sure if its because of the g-tube or is because he can't suck out of a bottle.  They told us we could dip his pacifier in formula and have him suck on it when he being feed but he stated sounding like he did when we first got to the hospital so we stopped.  He just doesn't seem to know when to swallow.  We are so worried we are going to end up back in the hospital again very soon.  Pain meds don't seem to help, so we think he is just really colicky and not in as much pain as others seem to think he is in.  He is on reflux meds, and we have tried gas drops but nothing seems to make a difference.  He is back on lactose free formula and we have tried the partially broken down formula (the really expensive stuff) and did not notice a difference.  So I am not sure its the formula that is causing all this either.

Tomorrow starts a busy week for us.  I have 6-8 doctor appointments to make btw him and myself; medical bills to call about (I seriously think the hospital thinks most Americans have thousand of dollars just laying around to use for medical bills!?! )  They expected us to pay Joey's hospital bill (our portion of it) BEFORE he was discharged.  Seriously, who has that kind of money laying around?  Thank goodness for payment plans:)

Joe's mom went back home today and while my dad is in town, they are not staying at the house, so while it will be good to still have help, not quite the same as an extra pair of hands at a moments notice.  But they are helping get the girls to school and home since I don't want to take Joey anywhere (besides the dr) just yet, even if its just in the car for a short ride.  

I hope tonight goes better than last night...we both need sleep so badly...Joe has to work tomorrow and I can't function to take care of the girls w/o sleep either.  

Sorry that this post is so sad and about negative things...I am trying so hard to stay positive....but some days its so damn hard....

2 comments:

  1. Oh Sara: I am so sorry that everything seems a little overwhelming right now. It will get better. Just hang in there my friend, and Keep the Faith. God Is So Good. Love and Hugs Leah's Nana

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  2. Sarah..we are thinking of you as always. Don't worry about the post being sad. Life IS sad sometimes. No matter how we try to believe all is well, some days are just...well....SAD....I hope joey gets some sleep tonight so you can get some rest too...What a wise choice you made with the g-tube. Keep posting I think of joey often..

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