This morning Josiah's sats dropped just as rounds were happening. They pumped oxygen into his nose prongs and gave him additional oxygen via mask, but it didn't seem to improve his readings. Eventually he did pull through, but it wasn't a good start to the day. They ended up ordering an x-ray. X-ray finally called to say he could come well after his 12:00 PM feed, which had been put on hold as they wanted the x-ray done before he ate. Anyway, the fun news in all of this was that we took him to the x-ray room on the main floor, so Josiah got to take a stroller ride off the 4th floor! However, the not-so-fun part was that they had to strap him into the Pigg-O-Stat (http://www.piggostat.com/AboutOurProduct.html - apparently named after Mr. Pigg, the inventor) to get the correct body position. After that drama we returned Josiah to his room and he slept for much of the afternoon.
In the morning, while we waited for x-ray to get us in, we were able to take him for another spin in the stroller. We also squeezed in a stroller ride in early evening. For most of the day he has needed quite a bit of oxygen to keep his sats up. Typically we haven't had to keep him on oxygen during stroller rides, but today we did. We have been using a small tank of oxygen that Graham straps over his shoulder which makes things much more manageable than the large tanks.
This morning's episode, and Josiah's general malaise today, reminds us that one of these days, barring a miracle, we will need to make a decision about what to do when he experiences a serious decline and is not getting any better. We look forward to talking through some scenarios with palliative care in the next day or so, so that we can get our thoughts on paper and make clear decisions before being in the heat of the moment. Ultimately we want to listen to God's leading in all this, but we are also thankful for the trained professionals he provides to help us think through these issues.
Josiah is a beautiful boy and a gift from God. We are thankful for our seven months with him and will treasure each moment we still have with him. We really want to get home so that he can spend time surrounded by family and friends who love him.
In the midst of our anxious thoughts, we are reminded again of "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6,7 (NIV)
Thanks again for all your prayers and support. It means so much.
Blessings,
Graham and Elizabeth
Hi! My name is Evelyn Fawcett, and I was told about your family and Josiah through Jean and Allistair Lucas (friends of my family). My son Cam was born with HLHS, has an extremely rough history, and so they wanted me to touch base with you all. I just wanted to encourage you with the home care stuff! Cam too went home on full NG feeds, oxygen, with 18 medications and injections. Our cardio. called it a "mini ICU unit," but it became manageable very quickly- within weeks. We just don't like the word "normal" in our house- there's no such thing. You won't get a lot of sleep, it's true, but catch naps when you can, accept all the help you're offered, and God will strengthen in our weakness. I am a testimony of that. Your little Isaac will learn such compassion and love through this, as my Maggie has. Much love to your family from ours. It's a hard course to walk, but we are never alone. *heart hugs*
ReplyDeleteHello Elizabeth and Graham,
ReplyDeleteFrom the rising of the sun unto the going down of the same, the Lord’s name is to be praised. Psalm 113 v 3.
Praise God, from whom all blessings flow; praise him, all creatures here below; praise him above, ye heavenly host; praise Father, Son, and Holy Ghost. Amen.
I pray to our Heavenly Father, in Jesus’ name and in the power of the Holy Spirit, that Josiah’s oxygen saturation levels stay at his ideal of around 80. He and you will experience the touch of God’s healing hands upon you daily. Thank you God.
Thou shalt keep him in perfect peace, whose mind is stayed on Thee: because he trusteth in Thee.
Trust ye in the Lord for ever: for in the Lord Jehovah is everlasting strength. Isaiah 26 verses 3 & 4.
And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee: fear not, neither be dismayed. Deuteronomy 31 v 8.
I'm following Jesus,
One step at a time;
I live for the moment,
In His Love divine.
Why think of tomorrow,
Just live for today;
I'm following Jesus,
Each step of the way.
The pathway seems narrow,
But He leads me on;
I walk in His shadow,
My fears are all gone.
My spirit grows stronger,
Each moment, each day,
For Jesus is leading
Each step of the way.
Love from your auntie Julia.
Elizabeth and Graham, My heart is with you today and has been on this journey. We've made it a daily routine of reading your blog and praying for you. We have been praying for you regularly in Heiress. You are a true testament of living out your faith and trust in God. Praying God's peace and presence for you today. Love, Janice Farhood
ReplyDeleteThere is one seated on the throne,
ReplyDeleteHe is the King of Kings,
The Lord of Lords,
Only He is in control.
Graham and Elizabeth: You write the blog one statement after another, but to the ones who are reading it in its entirety, I never leave the daily blog without thanking God and thinking how awesome amd amazing He truly is - all in the moments of only one day. Your days are full of miracles, as He is right there in your presence when the unexpected happens or when times seem even worse. He is incomprehensible and so beyond our earthly ways.
ReplyDeleteHe knows what the levels will be and when they will change and He has Josiah in the palm of His hand. He knows how to direct and guide you when the yoyo goes frequently goes up and down.
Just a reminder that your verse is the one which Pastor John repeated every day. We don't know what tonight or tomorrow will hold, but it is more important to know the one who does and He holds your hearts, minds and hands in His.
Praying each day, even when you do not hear from us. Love, J.E.
Isaac was at church this eve with Grandma and Grandpa and he looked so loved. I wonder how many prayers God stored up for you today??????Love, J.E.
ReplyDelete