Thursday, July 31, 2008

Adjusting to life at home again

Thank you to everyone who has been praying for Drew and our family - we draw on that as one would refuel their vehicle.  Some days I feel as though someone is siphoning my reserves away while I'm not watching, others I actually feel I have enough to run on.  Today would be one of those days I have a hard time finding enough!  Thank goodness it's almost over!
I should update everyone on how our last hospital stay went... we went in Wednesday night and the nurses were quickly chasing Drew down to put an NG tube (naso-gastric) - what we are calling a "straw" for Peyton - into Drew's nose that goes down to his tummy in order to get him some calorie support.  He didn't like the procedure too much, but once it was in he didn't seem to mind or notice.  Thursday morning a couple nurses came by to train me on how to put the tube in because we will be the ones managing it at home from here on in indefinitely... I thought I would faint at this though it wasn't as bad as I feared.  Drew proceeded to pull that one out while I had my head turned so I had to do it again!  (Little turkey!)  Daddy had his training session Friday, and we had to do it at home again (on our own) Saturday.  Drew wanted to test us I think!  He's doing pretty well with his NG tube now and it's definitely a much improved way to give meds!!!  It's also good to know he may actually be able to gain some weight now.  We had to up his calorie intake by Monday because even with the NG tube he was still losing weight.  We are pumping him as full as we can - you should see his adorable little tummy after his "meals!"  I'm hoping for a nice plump baby now!
Thursday the doctor decided to take him off one of the anti-seizure meds as we think it may be borrowing trouble - Drew is having calcium deposits in his urine which could lead to kidney stones so we wanted to cut that med off asap.  Finished that Monday.  We also cut off the iron, so he's now down to 7 meds.
Drew went for his liver biopsy Friday and the doctor doing the procedure told us he thought he would only need about 2 - 3 small plugs of his liver.  They ended up taking 9 plugs of his liver and it took a bit longer than expected.  He was sore for about 36 hours afterwards, but he appears to be ok.  They are now sending pieces of Drew to Toronto, Edmonton and Europe for testing - he will be well-travelled without setting foot on a plane!  We will not likely hear the results for at least a month and possibly up to 9 months (groan).  
Sunday night Drew's NG tube gave us a bit of a challenge... he had just gone to sleep and we were trying to give him some Melatonin in an effort to help him (he often wakes from his seizures and has a hard time going back to sleep - this has helped quite a bit... thankfully!) and his NG tube became plugged.  We tried all the typical methods one would use to unplug the blockage and were about out of options (apart from pulling it and reinserting it... on a sleeping baby...) when one of the nurses called in the reserves.  Nurse Dave came in with Coke.  I watched skeptically, while thinking, "You are giving my child what?  Caffeine AND Sugar?  At 11:00 p.m.?  Who's going to stay up all night with this kid!?!"  After watching him pump the syringe attached to the tube with all his might (fingers going white) all of a sudden - it worked!  Then he turned to me and said, "It's ok, he only got 5 mls of Coke..."  Last thing I was thinking about at that point!  I have since learned that this method can work due to the carbonation and that it would be wise to keep club soda on hand (don't want to have to put something more potent in the tube!  I can only imagine how he would do on Mountain Dew...).
They let us out Monday and we have been trying to figure out how to balance life for the last couple days.  Obviously, due to the delay in this post, there hasn't been much time for anything other than survival!  I have to admit, I'm not sure how I am going to do this without another person here with me to help during the day.  Mom has been here this week and she is a lifesaver.  I feel like I go from meds to NG to pumping to cleaning supplies to trying to get Drew to eat and then back to the beginning again all day long!  And then there's a very busy 3 1/2 year old!  I have likened myself to Dory from Finding Nemo alot lately - "Just keep going, just keep going, just keep going."  Don't stop to think, just keep going!
I have to thank Roberta and God the most though for the thing that's really keeping me going right now - from the verse in Matthew 6 that talks about not worrying about tomorrow for today has enough troubles of its own.  Roberta mentioned that perhaps that's because God has only prepared me for today and not tomorrow - he will prepare me for tomorrow later so I ought not to try to deal with it until I'm there.  That makes today a little easier.

Prayer updates:
Thankfulness for Drew attempting to use his left arm and leg occasionally - please continue on this one!
Thankfulness for the success of his biopsy and prayers for those working with his little liver pieces.
Prayer for the new anti-seizure med we have started that it might actually work.
Prayer that God will increase our faith in the way He can work in Drew's life!
Thankfulness for the support we have been shown in so many ways.

10 comments:

John and Angie said...

Thanks again for the update Kari. You are surrounded by much love so don't ever feel bad for drawing on it constantly. We'd love to get together with you guys but only when the time is right for you. Please let us know and we'll be there.

The Pakosz Crew said...

I am speechless. Your faith and perseverence are unbelievable. We wish so much we could be there to physically lend a hand to you guys. Keep hanging on to Roberta's wisdom, maybe tomorrow won't be so worrisome! We love you so much,
Ronni and Mart

The Pakosz Crew said...

Hang in there Peyton!! You are a great big brother. Just make lots of funny faces at him, to make him laugh.
From, Ben

John and Angie said...

Wow- Kari! You are amazing and so are the boys!
I'm so glad your Mom is here with you, but please let me know when I can take Peyton for a day! Now that we're back I'd love to help in any way you need.
Love you guys!
Angie

the Clarke 6 said...

Hi guys I know we don`t see you much anymore but we are thinking about you. Youe are in our prayers every day. If there is any thing you need let us know.

Love Curtis & Mandy

Gay Hoover said...

Sending love and prayers from Gay and Stacy.
We are trusting that baby Drew will be completely healed soon, as the doctors assess the available options.
And, we are praying for strength for YOU.
Fondly,
The Hoovers

Jan H said...

Hi Kari, Jordan and Peyton,
Just want you to know that you are in our prayers as you care for little Drew and each other. God will hold you up and give you strength that you do not know you have. Meanwhile please know that a multitude of saints are pleading with God on your behalf. We love you! Hang in there! Jan H

Mel, Scott & Cadence said...

Thanks for the update, Kari. As always, your strength and words are unbelievable. You're in our thoughts and prayers always.

Kevin and Laura said...

We love reading the detailed updates, it helps us feel not so far away:) Love you all so much.

Texas Staples said...

Kari,

Woman, you totally amaze me! I wish Texas wasn't so far away so I could give you a big 'ole sweaty hug. Sorry, but it is so HOT down here and you can't help but sweat.

I want you to be encouraged in knowing that there are hundreds of fellow believers standing in the gap for your sweet family, especially Drew. That's just here in Texas, so I'm sure there's probably thousands all over by now. Do you think Jesus' ears are ringing from all the prayers?? :-)

The scripture that comes to my mind is "In this world you WILL have tribulations, but take heart, for I have overcome the world." I can just picture Jesus sitting beside you patting your shoulder as you pat Drew's and whispering, "it's gonna be alright, my child."

You are HIS vessel of Light in a fallen world. His love is being made known to every doctor, nurse and staff member that you've come in contact with. Can you just imagine the ripple affect this will have on the Kingdom of Heaven. Go God...Go God!!!

We love you,
Randy, Mary, Ethan & Jeremiah