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| Relaxing in his comfy chair |
Four members of our Kitchener CCAC team came to meet with our team here. As I previously said, our liaison here said she hasn't seen this happen. We weren't in the meeting but after the meeting our SickKids OT came to our room and told us that the team was great and that we were in good hands. When the team came to meet us and Josiah, they said they would take great care of us. Our case manager said she'd hand pick the best OT and PT for Josiah. They were able to arrange for 4-hour shift nursing starting next Monday but starting this Thursday we'll have a nurse drop in a couple of times a day. We can even have the shift nursing whenever we want it so we may decide to have it during the day to enable us to have more time with Isaac. What a tremendous blessing this will be! Thanks be to God and to the Community Care Access Centre of Waterloo Wellington.
So, we expect to arrive home on Thursday. We'll come in a transfer ambulance so Josiah won't need to be in a car seat. He is currently sleeping in his car seat while I write this as he is doing a test to make sure his sats don't drop too low while in there.
Family helped receive the oxygen that arrived at our home this morning and later they set up Josiah's new room which used to be our guest room. Tonight, my dad and brother came to take back our car and some luggage.
Josiah has been very sleepy these last couple of days. We gave Josiah three doses of morphine today at 5:50 and 7:50 AM and then at 7:00 PM tonight. We decided to try oral morphine tonight and Josiah was taken off the pump. It was really nice to just have a button to push but Josiah is a lot less mobile when he is hooked up to the pump. Anyway, the morphine didn't seem to have an immediate effect. It could be because he is not "morphine naive" as they say. If we stay on the oral dose then it will just take a day before we can get a pump if we need it in Kitchener. He is getting the negative effects of the morphine. In addition to his lack of bowel movements, he is always rubbing his eyes so he may start on benadryl to counteract the itching sensation.
The casts of Josiah's hand and foot turned out very well. There are also two of his hand in mine.
We are finding it quite challenging to know what to give Josiah when he is fussy. Is he teething, hungry, in pain from his medications, trying to have a BM, trying to fall asleep, or air hungry? If we decide he is air hungry then it still takes twenty minutes for the morphine to kick in (if this dose is working on him).
I wondered today what would be harder if God takes him home: for me to walk out and leave him in a hospital room or have someone take him from our home. God will be with us and give us the strength whatever happens. Actually, I thought I might lose him last Friday so this all seems like bonus. These days are a gift. Thank you Jesus!
It is time to go to sleep. Thanks for your support and prayers. We love your comments and emails!
Blessings,
Elizabeth and Graham
It's almost 4 am. And I'm looking at the sweet pictures you have posted and am praying for you. I think one of the great lessons of life is resting in "the timing of God" It is a life long struggle for most of us. I'm both encouraged and challenged by your sweet surrender to the plans and timing of God for Josiah and your family. Tonight I'm praying that the Wonderful Counselor will personally advise you as you try and determine exactly what medication Josiah needs and that the Prince of Peace will surround you during these hours. You are loved. xoxo M
ReplyDeleteIve been looking fwd to reading all the great things that have been happening. Hes a handsome lil boy and hes a trooper. Much love Lisa & Ed Hayman
ReplyDeleteElizabeth, I sometimes read your blog first thing in the morning at work if you haven't posted something before I go to sleep at night so it's become quite normal for me to be a little teary-eyed at times. Thankfully when you work at a church that's ok, especially when I'm not the only one! Our hearts and prayers are with you and I hope you can feel that. I'm amazed and inspired by your honesty and your surrender to God's ultimate plan. I pray that God will guide your every step and that you will have an even greater sense of Josiah's needs. The girls have been praying in Heiress and they miss you. I was telling them on Sunday how you guys are a perfect example of what it means to trust in God's sovereignty and mercy. Praying God's peace and love for you today. Janice
ReplyDeleteElizabeth (and Graham) your blogs are a gift. They are so inspiring and full of strength for the tomorrows. Although, we as readers have to deal with this as reality (when we never thought of you as coming home this way either), God's plans are so much bigger than any of ours and His ways are perfect. We stand with you, as you walk in His plans. I have been praying often about not having those nurses on call and God is in charge of that too. He is such a great King on the throne and you get to follow Him in these days at home with your sons. May you see His miracles each day. We cover you in all of these changes with Isaac at home and all of your helpers, family and otherwise. God has blessed you with wonderful family members. May your patient transfer have been a good one. God bless all. love, J.E.
ReplyDeleteElizabeth,
ReplyDeleteYour blog has been passed onto me and reading it has brought me to remember you daily in prayer even though I do not know your family. You boys are blessed to have a Mom who displays such grace, patience, love and displays such unconditional love. May Jesus give you all you need daily as you walk this journey with your sweet baby boy. I am so thankful that Jesus promises to be your sons healer! I am praying His perfect peace over all of you as you trust completely in Him. Hugs. Rebecca
Hi, I feel like sharing that I've followed your blog over the past few years, here and there, and sometimes look back on your journey. The picture of Josiah in his chair has made me cry as well as when he's a bit older smiling in the bath. How beautiful. His beautiful big eyes, chubby cheeks and heartwarming smile are similar to my son's features so it makes me cry all the more. I tend to cry trying to imagine the loss certain families have had to go through. Only God knows why some children have a more challenging path. I can only relate in the very small way of raising a child with medical needs. I came across your blog as I heard about it from my mom, I used to attend WPA as a child. You are inspiring and I'm glad you have this wonderful blog to keep memories alive. When I've come back to the blog over the years I have specifically prayed for you and Graham to have dreams of Josiah and how wonderful that would be, as I've seen you write of hoping for dreams. You have beautiful children and thank you for humbly sharing as life unfolds. Have a wonderful day!
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