Yes, I should be in bed. I'm on my way.
Crisis has a way of seriously messing up one's biological clock. Never mind the constant flow of caffeine: anxiety, odd eating patterns, poor sleep, and plain ol' fear can thrash any attempt at a sleeping routine. None the less, I'm certain I'll fall asleep after I post!
OK, so here's what's new: Josiah will probably have his 'trache' surgery in the AM on Monday. On Sunday we'll be given a more specific time, and his pre-op schedule begins @ 4 AM Monday.
Further, Josiah's G-Tube is scheduled for May 8-9th (can't remember the specific date). This is kinda sucky since it means Josiah will only get 1-2 days of alertness after being paralyzed post-trache-op before he goes under again for his second surgery. BUT, God is good and will make good out of it. It would be nice if the surgeries were closer together, but maybe it just means that Josiah needs a little more time to heal from his trache surgery, or that it could be dangerous operating while paralyzed.
After an episode yesterday, Josiah has been put on continuous feeds. Yesterday he aspirated (stomach reflux after a feeding) which sent him into a nasty brady moment. It may be that his muscles at the top of his stomach are getting tired/irritated/etc and that he can no longer contain a full feed in his stomach without potentially harming himself. So Josiah's food now trickles into his stomach slowly throughout the day by a pump that applies pressure to the syringe containing the milk. Nope, we don't like it - com'on, wouldn't it just bother an infant more if he can't experience a full tummy?! - but if it's for his best we just have to do it.
I was able to hold Josiah for an hour tonight. He was groggy awake for most of the time (the nurses are continuing with his chloral as he needs it so that he's relaxed for Monday), but it was really good.
Marie has made a spontaneous trip to Calgary. She'll be flying out tomorrow morning. Her brother is graduating this weekend and it is an opportunity to be with family and be distracted from all the pain, questions, and confusion in life. You can really be praying for her, that she'll come back with vigor, faith, hope, and a clear and truthful understanding of who God is, as well as general safety and a healing peace upon her as she is away. For myself, I'm exhausted - more emotionally than anything - frazzled, strong in God but stuck in some serious fog. It ain't easy balancing work and a child in intensive care, and of course my mind is filled also with concern for Marie. You can pray that God will protect our mind and hearts from lies, and that we can fully trust God with our hearts and our Josiah at this time. I can totally see how so many marriages are dissolved after times of crisis like this; thankfully we have Christ, but that doesn't exempt us from the trials and the tension.
I've got a wedding to attend tomorrow in Richmond: I'll probably still go.
Aaaaaaaaaaaaaaaaaaaaaaand, it's time to sleep.
May God be near, real, and trustworthy to you.
- Andrew, Marie & Josiah
9 comments:
my name's roxi--a high school friend of Pauline and Chris. your story is heartbreaking and inspirational...thanks for sharing. may the prayers of the church give you strength emotionally and physically...may the molecules of your world shift according to the purposes of God
I love you man, I really love you. I hope you get some rest today, and know that there are tons of people praying for you, marie, and Josiah!, Hope to see ya today. If not I understand, So really take care. Hang in, God is good, all the time!
Andrew,
When does Marie get back from Calgary?? And I hope everything is going well at the hospital.
Kelly
Marie:
Good for you! I absolutly know that you need a break even for a few days. I am praying God will truly give you HIS REST AND PEACE and that He gives you a fun time and allows you to be able to regroup and come back restored and ready to face the next steps in this incredibly trying journey that you are on.
May God bless you and keep you
May He make His face to shine upon you
And give you His peace!!
Love Sue
Hello from Calgary,
I have been wanting to email for a long time...I have been reading your blog and thinking alot about Josiah and am consistantly excited that he is in our family because he has been perfectly created...everyday I go to work with children with special needs I am grateful that they have been perfectly created and feel so blessed to have them in my life...my students are equally challenging and brilliant, disabled and able, yet perfect just the way the are...I know many parents who have walked the path you are on and I know that I have no comprehension of what you are going through but I am sure if you ever need fellow parents to chat with they would be willing...
I know that the process of grief is so overwhelming and taxing but it is my hope that you allow yourself to fully feel what you are feeling and do things to take care of yourselves daily...you have only been given this task because you are capable of undertaking it...
I am excited to hear that Marie is coming to Calgary and wanted to offer a coffee date (with no expectations or pressure to take me up on the offer though as I know she probably has a tight schedual and lots of people who want to see her)...403 923 4948...
Please take care of yourselves and eachother...
~ Laurel Eckhoff McPherson
Hi Andrew!
We prayed for you last night...well actually it was more like 1 am...I prayed that God would protect Josiah...I prayed that the dream he gave me before of Josiah dieing would not happen...and I prayed that you all would be comforted by His peace!!!
I'm sorry it's so hard on your marriage and sleeping regime...I understand...sort of. I've seen alot of pain in marriages...to stay married in the midst of it IS hard work...but you're right...with Christ in both your hearts and on your minds you can do all things...even overcome this small hiccup to God.
Hang in there...this too shall come to pass...right? The fog will soon clear and the sun will shine through those heavy clouds...just look at the weather...pouring rain one night and the next day Hot and SUNNY??? What's up with that hey?
K hope your still kind of sleeping...Peace cuz'n
Kevin / Laurel:
Good words. You are absolutley right. God only gives us what we can handle so He must think alot of Andrew and Marie. You are right too when you say that we can not know the true extent of what Andrew and Marie are going through. We can only get a very small idea of what it must be like for them.
Therefore we all comit to continuing to hold every need up in prayer for them! Every day! As long as it takes!
Love Sue
I hope Marie enjoys her time in Calgary, but I know she will be missing you both like crazy. I hope that you got the sleep that you needed last night to have the energy to be with Josiah today. Marie and I talked about me coming out again on the 1st, cause Kennedy has a dr appt in Vancouver, but I think I will do it another time after Josiah has all of his surgeries. You all need time to be together and to rest. But so you know, I am still thinking and praying for you everyday.
Lots of Love,
Christina and Kennedy
HI Andrew! Just wanted to let you know that I saw your beautiful wife here today in Calgary. It was so wonderful to see her. Thanks for sharing her with us! It was so nice for us all to pour out our love on her. I hope you are having a fun evening with your boy! Boys night!!
Heather
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