Unless Parker is on a combination of pretty high doses of Morphine, Loratab, Verset, and Ativan he is exceptionally agitated, thrashing all over the crib, and showing signs of great pain. Twice today he threw both of his legs over the sides of his crib, stretching the cpap hose to it’s capacity.
This causes his heart rate to sky rocket and his O2 levels to plummet. They tried to wean him off the vent/cpap thing he was on today and were unable to. The extra work of breathing with only the trach mask and his usual O2 requirements sets him off all over again and we wind up putting him back on the cpap to help make breathing through this trach easier.
While he is calm his sats are beautiful. Unfortunately the meds only work for a very short period of time, and Parker is right back to showing us how miserable he is.
Anytime a child with PH undergoes surgery it is very, very hard for them to return to their baseline. Each time Parker gets so upset as to significantly raise his heart rate and blood pressure we know he is also raising his PH levels. A dangerous cycle of events for our guy.
We are scared to death that Parker is going to pull out this newly placed trach even though he has the armpit high No No! boards on.
ALL of the doctors are confident that once we can get Parker back home that this trach will play a major role in helping with his PH issues. My heart tells me the same thing. But we really could use some help to get Parker comfortable, less angry and able to require only the trach mask to keep his sats up.
I just called to talk with Reed but was told that Parker is struggling so much now that I would need to call back after he could be calmed down.
Please keep those prayers coming.
Specifically:
That Parker’s pain could significantly decrease.
That Parker could have spiritual help in the major transition of breathing through his nose to learning to breathe through his trach.
That Parker’s heart could be filled with peace and the knowledge that this can and will get easier and better. That he can feel his family’s love and our devotion to his care.
That Parker’s sats would return to his baseline and he can be weaned from needing extra help from the CPAP to being able to maintain his baseline with only the trach mask.
That the doctors and nurses working with him can come up with a successful and spiritually inspired treatment plan to help him achieve his medical goals.
That Parker can return home to begin an amazing journey to becoming a healthy little kid.
Again – praying.
Poor Parker. I am sorry he’s having such a rough time of it.
Saying some prayers from him tonight.
He must be so very frightened when he is awake. Praying for peace and healing.
sweet Parker is in our prayers! Thanks for keeping us updated Tammy. HUGS to you!
Katrina
Thank you for the prayer list. It helps to know what he needs, and what we need to be praying for. You know that we love you guys. Hang in there. It will get better.
Pam and Rhett
I’ve been praying for Parker all week. Thanks for giving specifics on what he needs prayer for. I’ll be praying for you also, as this can’t be easy on you either.
I stumbled across your blog today through an interesting series of events. Parker has attached himself to my heart and you can be assured of my prayers. We’ve done many hours of hospital time with our daughter, now 12, who has spina bifida (among other things). Not fun times. Very stressful in fact. I, too, had residants and nurses with lists of reasons why they wished I’d fall off the face of the earth.
Hang in. You all have been added to our prayer list and I’ll be passing Parkers story along to friends.
Poor little guy! Hes in my prayers today for sure.
Praying for Parker. And praying for you as you watch your child battle.
Praying, praying praying.
Love, Kei
Thank you for the specifics – he is in my prayers. It sounds like such a scary time for him (and you!)
Prayers… lots of em… coming your way.
Poor little guy.
You know I’m praying.
WOW what a strong mama you are, and what a strong little man you have there!
He’s in my prayers, he’s in my constant thoughts – and his carriers on the way – I hope it helps in some small little way!
Oh man, my heart aches for him.
Lifting him up!
Poor little man. He must be so angry and confused. He’s in my prayers. You are too, Tammy.
Hugs, Tammy. I don’t know if I ever told you, but Nana needed 3x more versed than a normal kid her age pre-op for her T&A. Maybe they could try more?? Or a drip?? Hugs, hugs, and more hugs.
::::::::::::::PRAYING, PRAYING, PRAYING::::::::::::::
Lifting up little Parker in my prayers!
I will be praying for Parker (and for you as well)!
I hope this trach gets him on the road to recovery so this can all be a distant memory. God Bless!
Oh, my heart aches for him and you all.
When one of my little girls was struggling after birth one of the nurses allowed me to sing.
I softly sang the songs I sang when they were still in me, and my little girls seemed to calm a bit.
So the nurse recorded my songs and played them for her.
Just nearly whispered baby songs…
Oh little Parker!
Bless him ~ I hope and pray that all this will help him start feeling better. Poor lil guy.
Will keep praying and send out healing thoughts for him and for you and all of your family.
((((((((((((HUGS)))))))))))))
Oh, that brings tears to my eyes. I am so sorry that you and Parker are going through such rough times. YOu are in my prayers.
Praying for healing and peace for you all. I am so sorry he is so upset. He must be just terrified when he is awake. I am praying hard.
peace be with you
Kim and Miss T
Keeping Parker in our prayers! I hope tonight goes better! You tell those residents – afterall – they really are just learning and they SHOULD learn from their mistakes!!! Hoping Parker can make the adjustment and come home soon!!!!
my heart breaks for him and his pain. i’ll be praying.
My “Mama’s Heart” is aching for you, and Parker. I am praying very hard for you, and will raise Parker up in prayer in our church this Sunday. Our entire cogragation will be praying for you and Parker and your family.
I was wondering if Parker has a specail stuffed animal he likes to love on. I was thinking that it might be a comfort to him. I find that being calm but assertive works in many situations dealing with medical people.
Prayers as always, I even posted an entry on my blog asking for everyone to pray for Parker. Keep us updated. HUGS!
I am praying so hard for precious little Parker, and you and your wonderful family.
I will be lifting you all up constantly today and in the weeks to come.
Much Love from South Georgia!
Debbie
Praying Parker through to that keyword–normal. I cannot anticipate the joy of someday reading Parkers blog and having it be all about common, everyday childhood events.
Praying, praying, praying without ceasing.