Sunday, May 27, 2012

A quick, late update!

Hi friends!

Rose here.

We apologize for taking SO LONG to give you an update on our favorite little guy. This week has been GREAT for Jude...but not so great for Jude's mommy. Sadly, I was so sick this week that I only saw Jude once this week. It totally broke my heart but I knew that I had to stay away to keep my little man healthy and well. After IV fluids and a trip to the ER, this dreadful illness has nearly run it's course and is on it's way out thanks to two types of antibiotics! (And a sweet hubby who balanced our two kiddos and running a house....and two awesome parents who swooped in during the middle of the night to rescue all of us!) The plan is for me to see him tomorrow and I can't wait!

So, what has Jude been up to since his move to the PICU???

- Jude is off of Vapotherm and now on nasal cannula!! AND he is on very low setting on nasal cannula! (for all the other CDH parents out there: .4 ltrs!)

- Jude was put on methadone soon after arriving at the PICU to help him wean off of the two hefty medications he was still on. On Friday he was officially off of the Fentanyl and tomorrow morning they will turn off his Versed! Woo Hoo! Now he will begin the journey of coming off methadone and clonidine (also used to help him wean off the drugs mentioned above).

- Jude's tube that was in the top of his intestine was moved into his stomach on Friday. And so far he is tolerating his feeds into his tummy really well! This is a HUGE praise!!!! He has thrown up a few times but this is expected because of his acid reflux and his withdrawals from medications. Please pray that this continues to go well and that the doctors will feel confident in moving Jude forward with his feeds. We are thinking that the next step will be compressing his feeds into shorter amounts of time.

- Because of Jude's progress with weaning his medications and feeding, the doctor mentioned to Brian that Jude may be moved to a step down unit as early as Tuesday! We are excited and nervous!!! Please pray for this transition and for the doctors who will make the decision about this step. We want to be 100% sure that he is ready!

What you can pray for:
-The big G tube debate: Jude's PICU docs think Jude may still need a G tube but Dr. Hebra may not be comfortable (because of Jude's altered insides) with putting a G tube in. So, Jude might be fed through the tube that he currently has from his nose to his stomach. But he could also take to feeding by mouth.......

As you can see the issue with feeding is a big one.

We aren't quite sure what will be best for Jude. We what to do what is safe and beneficial for our sweet little man.

We just want him healthy!

Will you join us in praying for the many discussions that will occur regarding Jude's eating for the future? Please pray for a lot of wisdom for the people evaluating Jude's eating abilities.

- Annabelle: As I was writing this post our sweet Annabelle woke up and threw up. BIG bummer. Please pray that it was just the result of too much junk food today and that she will wake up perfectly healthy!

I apologize if this blog is short and scattered. My brain is simply not capable of writing clearly tonight. We've had so much on our plate lately. Thank you for lifting us up in prayer. We are truly thankful, friends.

God bless!

1 comment:

  1. Dear Rose,
    I have to tell you that things moved so quickly when Samuel got to the point that Jude is at now - almost off his meds, on .4 litres (that is soooo awesome!!!) of O2 by nasal cannula, and NG fed. That is when he moved to step-down here and it was a big transition but so good too. This is where he learned to eat, went for walks with me, had his physio really ramped up for ... dare I say it ... HOME! :)

    In Samuel's case, he did learn to eat by mouth and came home with the NG tube for top-ups. You don't need to rush a g-tube decision until you see what he can do orally. He can have NG feedings for some time. Samuel finished NG top-ups about 2 months after coming home, has needed them at different points when he's been sick (or reherniated). So if it is what is best for Jude, of course you will do it. Just wanted you to know you might have some time to decide. :)

    So many blessings to you and yours, Rose. I pray that your non-hospital family gets *healthy!!!*