It's been a long one folks!  This isn't going to be detailed...I'm exhausted.  I'll do better tomorrow, promise.

We woke up this morning to screaming...not crying, but SCREAMING! Neither of us had ever heard Derrick scream like this before. It was more than an angry scream, it was a painful one. I picked him up and he stiffened his body and just wailed. There was nothing to do to console him. Finally he got another dose of Oxycodone and he calmed down. Poor guy!

By around 6:00 tonight Derrick had only eaten about three ounces of that nasty new formula and a little bit of juice. We knew he was having poopie problems because he hadn't gone since Sunday! That'll cause some discomfort. They gave him some Miralax, but it needed to go in four ounces of fluid, which was a problem. He got down about 3/4 of it, but it took about eight hours, so I'm thinking that diminishes the effectiveness. We finally got an order for a suppository, and about 45 minutes later we had a brand new kid! I really hate that it took all day for us to get him some comfort. :(

Total recap of today:
Pain meds
By now, D should probably just be on scheduled Tylenol for pain, but because he still has a chest tube, he still needs his Oxycodone.
The nurses said that adult patients say the chest tubes hurt worse than the surgery site.  Ouch!  If you haven't ever seen chest tubes, google an image and you'll see why that's easy to believe.  The thing that worries us is that the longer they're in, the more they're going to hurt when they come out.  The one he has left isn't just stuck straight in, it's snaked around in his chest cavity collecting fluid from all over.

Derrick is probably having some headaches.  Because the surgery redirects the blood flow from the upper body, the pressures change.  Until his body gets used to the new blood flow (which should be within the next few days), he will probably have headaches.

D has also been flushing.  This is also caused by the change in blood flow and will hopefully subside soon.  It looks kind of uncomfortable.

Derrick has a yeast infection on his neck that was probably started by some of the tape during surgery and his bandage afterward.  He has been using an anti-fungal cream for the past day and a half, so hopefully that will go away soon.  It looks terribly painful!  Justin said it looks like somebody put a hot curling iron on his neck and left it there, and it does.  It doesn't seem to bother him though.

 Caused by not drinking enough and the pain meds.  The problem is he can't come off of the pain meds because of the chest tube, and he won't drink enough because his tummy hurts.  That one is kind of a catch twenty-two.
 Chest Tube

Yesterday (Wed.), he had 28mL of milky drainage.  Today he had only 18mL of drainage and it was clear (well, yellow, but clear as in not milky).  It being clear means that his body is responding to the no fat diet.  Thank you God!  Sometimes people don't respond to the no fat diet and they have to go back in and repair the thoracic duct surgically.  Thankfully that doesn't appear to be necessary for D. To have the chest tube removed, D can't have more than 12mL of drainage.  That's how much his body can absorb on it's own based on his weight.  I'm assuming that they'll leave it in all day tomorrow (Friday) and watch the drainage.  As long as it's 12mL or less they'll probably remove it Saturday (please, please!!).  They'll keep D to monitor him Sunday to make sure he's not collecting fluid and if he's not, maybe we'll go home Monday.
Derrick pretty much refuses the Portagen.  Even loaded down with chocolate syrup.  After drinking nearly nothing today, the doctor decided to let him try skim milk.  He's been eating yogurt, so we're assuming he's ok with the milk allergy thing we were worried about when he was really young and having issues with his formula.  He drank almost four ounces of skim milk tonight with no chocolate, so we'll probably stick with that for now.  Hopefully he'll continue to drink it and he will be able to tolerate it.

I think that's about it for now.  I know I shouldn't complain, but today was just rough.

And now it's not uploading my pictures...ugh!  I'll post them tomorrow.  Earlier than 2am like it is now, so check back later in the day.  I've been told that some of you don't like it when you don't know what's going on (and I totally appreciate that), so I wanted to get this up.  It'd be better with pics, but I'll post them asap.  Technology is good as long as it works...Sorry!

Thanks for the messages, emails, phone calls, and prayers.  We appreciate them SO MUCH! 

P.S. If you've been trying to call us and keep getting our voice mail, email me and I'll give you our room number. We can't have our phones on in here and they're both dead and we can't find the charger, so...sorry! We're not avoiding you, promise!


  1. I hope D doesn't wake up screaming again this morning and you have a better day. It sounds like the little fella is going through it, but doing well overall. I pray you can get home soon, which I know you all will be glad to do. Praying Derrick continues to improve and that you have a good day today! Take care.


  2. Shannon, I know you and your husband are exhausted. You need to take care of yourselves. You need to stay healthy so when you get home you can take care of Derrick. You need to get some rest. It's hard to do when you're so worried about your little guy. Derrick is on his way to recovery and it seems he is doing well. Today should be a better day since his tummy will be a little more comfortable. GET SOME REST. Praying for all of you.
    Heart Hugs - Gale Bagwell, grandma to Ivan Taylor HLHS

  3. Praying and sending hugs! D is such a fighter and I know that he gets it from y'all :O) I will call you tonight as I have to work til 7. If you need anything let me know!
    Love, Jess, John and Lo

  4. I'm so sorry Derrick was in pain. Hopefully, today will be a better one.

  5. I really hope you all are able to come home early next week. I'm praying for the tubes to come out. Get some sleep when you can. Looking forward to seeing you next week.

    I'll call you soon to find out when we can bring dinner.

  6. Praying and will continue. God Bless and give you strength.

    Love and Prayers-

  7. That portagen is awful... try it! Sydnie wouldn't take it either. Instead, she was able to tolerate "Resource"(made by boost). It's a fruity drink that is similar to portagen. We were able to get it from the hospital's parmacy. It still has an odd taste but it's so much better than portagen. It's even better served cold! Prayers for less drainage so you guys can return home soon! Keep up the great work D! You doing a awesome job!

  8. Bless your heart. I know you guys are exhausted. Praying for D to have a better day/night and for you to get some rest.
    Keeping the prayers coming!!