Friday, February 25, 2011

Learning Curve

This past week and next week we've got a lot of learning to do before Stephen comes home. Even though to us he often times seems like a healthy baby, the reality is is that Stephen is a special needs baby who requires a lot of extra TLC. Last week the teaching started with dialysis and we wrapped up this week with CPR. Next week we will continue learning dialysis until we've got it down and are comfortable enough administering it by ourselves at home. And somewhere in between we have learned lots of other things. Here is just a sampling of the things we have learned to prepare for Stephen's discharge and that we will have to do at home.

1. Administer dialysis; hook him up, unhook him, record the details of the nights dialysis, empty the drain bag and prepare the setup for the next night

2. Give him his meds via his g-tube. Luckily he only gets about 3 meds per day.

3. Clean his g-tube site each time we change his diaper

4. Check that the g-tube balloon is properly inflated each day so that it doesn't pop out

5. Prepare and mix his formula and breast milk feedings for each day for the bottle. He gets a special blend of fortifiers and protein added to the formula and milk.

6. Setup the feeding pump for continuous feeds overnight

7. Give him his epogen injection twice a week. epogen helps Stephen produce more red blood cells.

8. Check his blood pressure

9. Weigh him

10. Record every milliliter of fluid Stephen takes in and then calculate his night time feedings

Each of those steps are pretty easy, with the exception of the injection. I gave Stephen his injection yesterday and it was so brutal. First I had to actually work up the nerve to do it and then when he cried, it broke my heart. Evidently the epogen injections really sting. So hopefully they're going to switch up the concentration or something, so that it won't be so uncomfortable for my little man.

Other than that, the rest is just a piece of cake! :) HA!


  1. I am so happy to read that you will be taking him home!!! Stephens life is a constant reminder to me that God gives out blessings everyday!!! It sounds like y'all are ready to go and have everything under control. So so happy for tout family!!!!!

  2. Both my kids hated their EPO shots (they were ages 6 and 7 at the time) and one thing that really helped - said by them - was a warm compress before and right after. We used those gel things that you could heat up in the microwave. We had two one for before and one to put on right after.

    All this because "my people prayed"!! May EVERYONE who reads his Blog CONTINUE to pray EVERYDAY for God's continued Blessings for Stephen and for His BRAVE,COURAGEOUS and AWESOME parents!!!!

  4. Julia - thanks so much for the advice! I will definitely get one of those warm compresses!

  5. I guess that's the benefit of starting them after they could talk, they'd like to know their experience could benefit your sweetie. Hang in there Momma Bear!

  6. Dear Lindsey and Billy,
    I can only imagine how overwhelming this all can be but I am positive you will master these tasks and they will become second nature to you. Compared to all you have been through over the past two months, this is a piece of cake. Once you are all home these will become a routine and your little guy will grow right before you eyes. Just keep your faith. God will guide you as he has been doing and everything will be fine.
    Hugs and kisses to all....
    Aunt LuAnn and Uncle Dick

  7. lindsey - please know that you are never alone. as one of the nurses who has been blessed to care for stephen and spend time with you and bill, i think i speak for everyone when i say "we're only a phone call away". we are all so happy for your amazing family!
    love - jenny