It has been a very emotional and tiring two days. We started Oliver on feeds through his tummy and with in about 10 hours he had very bad diarrhea more than once. After talking with the hospice group they felt that it was a sign Oliver just can't handle foods and it was maybe time to just enjoy what is left. John and I cried and Adina cried. She said, "quick mommy, get Oli in the car and we will get him a room at Gillette and the doctors there can fix it!"
After a few hours we decided that we have to try just one more time! We ran Oli's feeds at 3 ml's per hour. A very tiny amount but he did okay. Today we bumped him up to 5 mls. No tummy pain, no diarrhea, no bloating, he is looking good. We bumped him to 7 and then 10. 10 is where he was at in the hospital and we could see very quickly that he would not tolerate that amount a week ago. We will see how the night goes, we are holding our breath. His normal feeding rate is 55 mls/hr so 10 is still a very small amount but huge for our dude. We want so badly for this to work! Oliver is having his big boy haircut tomorrow and then professional family pics as well. Oliver's day nurse had connections for both services and they are coming right to our house. She is the best! There are so many great people in this world that have so much love. We are amazed at how wonderful everybody has been through all of this. Oliver has the very best nurses who shower him with love and the very best care. Time to go crawl in bed with my little dude. Oli's bed has become a family hang out where we sit and cry, laugh, and cheer him on! Go Oli!!
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6 comments:
Go Oli! We love you.
Sending you lots of love and hugs from New Zealand. xoxo
I love that you decided to buy a big boy bed for Ollie and spend time snuggling, kissing, holding and studying his little face! I strongly believe this was one of the best decisions ever!!!
Taryn, I wish there was something that I could say to help to make you feel better! I wish there was more that you or anybody could do to help ease the pain- yours and especially Ollie's! But I do have to say, from all that I am reading, it is VERY clear that you are doing everything and beyond for Ollie! I am SO happy and relieved your family receives so much help and support from all these great nurses! God is helping and reaching out to you by sending those nurses and doctors your way. By providing you and John with all the love and power and energy to care for Ollie through this emotional and tough journey.
I don't know what else to say than I sincerely hope your prayers will be answered!!!!
Love and hugs and strength your way!
If there is anything that we can do to help, please, let us know!!!!!
Cathleen.
PS: acting and deciding in Ollie's interest like you are doing, does not mean your are giving up but you are having tremendous love and respect for him! <3 Everybody who knows and loves you knows that, so no need for appologizing for your decisions <3 <3 <3
Hi John and Taryn....Miss Susan gave me your blog address....my heart is so heavy for you....Bill and i pray for all of you every day...we are sooooo glad that you have so many family, friends and and church family surrounding all of you through this journey. You guys are special and i am glad you are reaching out and touching your little boy. He is a very special kid and God has His hand on Oli's life. None of us know how long we have, but it is how we live it today that counts. Your situation makes me more thankful and grateful for my family. Hang in there Taryn, God is giving you strength for each day that comes and His wisdom to deal with it! When you think you have no more...look to Him and He will give you His strength. Every time i am at this place i look up and say, i can't do it God, i need your help to make it through this day and some how He gives me strength that i do not have to do what i need to do. God has used the hardships in my life to grow me and to touch and help heal other people's lives...He will use you as well. Taryn, you have a very tender, loving heart and God is using you right now to touch your little boy and your girls. God has given you wisdom beyond your years and you are bringing healing to your family...keep seeking God and He will answer you!!! His will is better than our own...I pray He gives you both peace and comfort through this unsure time. I pray God heals your silly, strong,Laugh out loud precious little boy!!!!
With all His love, Nicole Evanson
The May Family is holding their breath with you!!
You are in our thoughts! We are sending strength and patience you way, as well as maaaany many hugs and lots of love!!!
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