Another Rough Night
Last night the "significant reflux" continued. It was getting to the point last night that everything that we put into him he shot back at us. Being that he wasn't keeping anything down they had to up the amount of the IV going into him to keep his fluid levels up. They also had to put a machine back on that continuously feeds him his milk too. So now for the time being he doesn't even drink out of the bottle. They keep telling us that these aren't steps back, but sideways....I still haven't bought into that theory personally.
It is going to take a day or two for the new heavy duty dose of acid reflux med (prevacid, not prilosec) to start to work. Then we can go back to the bottle and start with that again. You can tell the reflux is painful the way that he fights and kicks and screams for 20 minutes at a time. The horrible thing about it all is that you can't do anything to settle him down. The only thing that you can do is to prop him up and let gravity do the work. It is so frustrating to see him throw up continuously like this, and see him be in pain, and then to top it off you can't do anything to help him.
Steph and I were bouncing off rock-bottom last night when we left about 1 am to be honest. The last couple of days have been a huge roller coaster and test of strength. Today is a new day though, and he seems better. He is awake and alert and not fussing. I got to give him a bath today. That was fun and he really liked it. So Snickers the scuba kitty will definitely have a bath buddy when we get home. (for those of you that don't know, our cat loves the tub, well and the toilet too)
Today is going to be a better day. We can tell already.
This picture is from 2 days ago before the tube went back in and the IV. This pic is courtesy of G'ma Patsy.
Thanks,
Rich
posted by The Petska Family @ 9/16/2006 01:05:00 PM
6 Comments:
Oh my goodness- that picture melted my hearted! He looks like he is smiling! I love it! Thank you for that! I am sorry to you hear you all struggled another night. I can't even imagine your frustration, yet patience to get Braden through this next step. We will pray,as always, for Braden's and your endurance! Keep your chins up!!
Love, Ray, Melissa, Justin and Jonah
Oh no, I'm so sorry to hear about the reflux. Sometimes reading your posts I feel like I'm reading about my own life 4 years ago, we have gone through very similar experiences. I won't tell you our horror stories, but it is so tough when your child struggles more with eating than recovering from open heart surgery. I really hope things start to get better soon and you can get your precious little boy home! Have they given you the option of going home with the ng tube?
Good luck and hang in there!
Amanda Fischer & Ryen (4 yrs, HLHS)
Havent checked in in a while. Believe it or not, Braden is making good progress. He is beautiful. Dont be too hard on yourselves. Surrendering your child to staff that you dont even know is a big step. Please know you are doing the best and all you can. We are so often hard on ourselves and constantly asking why. Gods peaceful wings surround you. Judy Henricksen
Heavenly Father,
I pray that you will pick Rich and Steph up, dust them off and fill them with hope, encouragement and your peace to keep dealing with all that is before them day in and day out.
We thank you that you have sustained them and Braden. You have already done miracles.
Help them Lord to take care of themselves individually and as a couple so that they are refreshed and strengthened to meet the challenges.
God's blessings, love Georgie
What a gorgeous little boy you two made! My mom forwarded me a bunch of pics from Grandma Patsy and both Evan and I couldn't get over what a little cutie pie he is. You two hang in there...I can't begin to imagine what a long road this has been for you three, so far...but I am continually astounded by the strength and faith you have both shown as you walk through this with your baby boy. Even with the frustrations that have come recently, I think that you two have handled all of this beautifully. I have no doubt that you'll continue to find strength in your faith and each other and before you know it, you'll have baby Braden at home, where the three of you belong. Lots of prayers coming to you from this little family in MA. :)
Jenny Valente
(cousin Bonnie's daughter)
Hi, I have to admit that this is hard to read, the tears are flowing just cause I feel your pain.. But on a good note, those picturs that G'ma Patsy sent literally melted our hearts..He is so gorgeous and peaceful looking...
We are praying for a good day for all of you today and the hours to come, take care of yourself and stay strong..Cuz, Sara
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