Today's appt. went very well. The drs. were extremely pleased with Caed's progress. Like I stated before, our goal was to get to 120 ml on tube feeds, however his stools have definitely showed it. Greatly increased in frequency and lack of consistency. The drs. were not alarmed in the least and actually expected it. They said we have pushed his little intestines pretty hard the last 2 weeks (increasing by 20 mls), and now we just need to 'give him a break.' Allow his gut to catch its breath. They also cut 2 more hrs. off his feedings, so now he is only hooked up 18 hrs./day. That's wonderful!! We made a few adjustments on some meds, but other than that......everything looked great. Labs, weight, etc..... We also will only have to draw blood every 2 weeks for a month, and then if all looks good, will go to ONCE a month!!! yea! His next NE appt. will be early April (we're stretching it to 3 months now). Todd plans to be here for that one. Caed will have to undergo a scope and small bowel series. Lots of testing....not fun....but necessary.
Our day was a little hectic, but ended sweet. This morning and afternoon I was literally on the phone or internet continually trying to solve some Home Infusion problems. Not sure anything really worked out the way I wanted, but feel ok with it now. Caed was so patient with me while I worked, therefore I decided after I was done the 2 of us needed to 'hit the town.' We ate a great supper and then headed to the movies. It was fun just the 2 of us. Made me realize how much I need to do that more with each of the kids. We had a great date!!
Our flight leaves very early in the morning. Not looking forward to that, but know it will be worth it not having to waste the whole day traveling. Can't wait to see Reagan and Caleb again. It's kinda strange. I've only been gone 5 days, and yet I feel like it's been 5 weeks!!! I guess it's just the environment I'm in. Causing old emotions to resurface.
Better go hit the sack. Going to be a short night!!!
Thanks again David and Allison! You have been a huge blessing to us!
7 comments:
So thankful all went well with the check up. I am glad you and Caed were able to enjoy time together.Day by day it all improves and your life gets better.
Prayers still coming your way.
We will look forward to seeing you in April. We are so happy to hear the great report!!! Nice to know that you will all be reunited as a family by this weekend. We will pray for safe travels for you all!
Love you all lots,
Carol and Cork
What a relief I am sure! We will pray as you begin a new schedule! Pray for 2009 to be a good year for you and your family. God's blessings on you all! We continue to pray...
Yea!!!! Sounds like a great visit!!!
-Ashley G.
Glad you had such good news! Hope you had a good trip home.
Hello there. My name is Jennifer Voth and I am married to Chris Voth. I saw this web page in the history and went and looked at it. Chris must have been on this web page and it caught my eye. I do remember him telling me about Caed. I have not left the computer for 2 hours. Thank godness, Chris is working late because dinner will not happen tonight. Been too busy!!! I have not done a thing but read this incredible blog about your amazing cute as a bug son, CAED. I am a nurse so, of course I find all of this very intersesting. Don't know if that is that right word to use as you and your family find this as a heartache. I am always amazed at the wonderful nurses and Md's that a family comes in contact with during a condition such as this. I, myself am working in a digestive disease infusion center and have for the past 6 years. If you ever need any contact with MD's please let me know. I work with some of the finest pediatric gastrologist in the Dallas area.
Take care and God Bless you Caed,
Sincerely,
Jennifer Voth
So thankful Caed got a good report. It looks like things are going well for you guys. I pray for 2009 to a great year for you all.
Love ya!
Steph
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