We continue to just get through the day, sometimes hour. Oliver is having a hard time tolerating his TPN (food in IV form). He is retaining fluid and getting overloaded and it is making breathing hard and painful. Our option was to stop TPN and see how his tummy does. We are not ready for that option yet. They will lower the fluid volume in the TPN and keep the calories the same and see if that makes it any easier for Oliver. He wakes up for a few minutes but is usually in a lot of pain. We have a couple minutes where he will smile a little bit and we suck that time in as much as possible and hold on to it for the rest of the day. We are so lucky to have the best nurses in the world. Our hospice nurses have been great and are there to do all the extra work and make the calls so we don't have to. They are honest with us and help us make decisions that are really hard. Gillette has also been in close contact to offer support and resources. We are really blessed to have so many resources available, great nurses, and the best family, friends, and church community ever! Como Park Lutheran members have been bringing a meal every night. It has been SO helpful, THANK YOU!!
John and I asked the hospice nurse today for her honest opinion about what she was seeing with Oliver. She said that everyday we have been home we continue to make a lot of changes from increasing the morphine and ativan and decreasing fluids and giving meds to try and take the fluid away from the lungs. She said so far Oliver has not hit the plateau that they hope to see kids take for a while when going through this process. We are not giving up hope. John and I know and see the changes but we just can't seem to fully comprehend that it is actually happening. He is our little stud muffin and this just seems so unfair that he has to struggle like this. The nurse said that some kids still plateau for a while, some continue to decline fast, and few get any better. We so want Oli to get better, I think we both beg God to just give us more time with our happy boy. We have no control and we are going to snuggle and love and kiss Oli and follow his lead. As I said last night, this just all really sucks.
Adding on to tonights post........................................
Oliver just woke up and is having great difficulty breathing and is in a lot of pain. Please pray for Oliver. We are so scared.
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6 comments:
There truly are no words to express how anguished we are for each of you. We continue to pray for Oliver and for you. May God's grace continue to envelop you and provide you moments of peace.
Marc, Dawn, and Juliette Al
We are carrying your family and Oliver in our hearts and prayers. May God provide strength for you and healing for Oli. Carol and Don Kelsey
There is nothing more painful than not being able to help your child when they are suffering. Your assessment is spot on - it all sucks.
Taryn and John,
My thoughts are with you, Oliver, Adina, and Cora. Thanks for writing your updates; I hope it helps you to write them as much as it helps me to be able to follow along with your life. You are an amazing family and I am blessed to be a part of it. I will keep all of you in my heart,always.
Susan
Dear Klawiter Family-This is Ginni Carley (Barb and George Carley's daughter). I just got the link to your blog and read about Oliver. I can't tell you how brave you all are through this whole ordeal. I cried as I watched the beautifully sweet video clips of Oli. You are all in my thoughts and prayers every minute.
Ginni Carley
I'm so thankful that we can help you by bringing meals - such a small and simple thing to do for you.
As always - please let me know if there is more you need.
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