I hung up and my heart sank a little, I knew the plan, the doctor had been commenting about it all week, but kept saying that she didn't feel like it was necessary, "It's just going to be a few more days," is what she had been saying all week. Today, she didn't need to call me and tell me, I knew what she was going to say. I even talked to Scott at 12:53 pm and told him what she was going to say.
Evelyn is coming home...on oxygen with a pulse ox monitor :)
Finally, after waiting impatiently at home in my rocking chair at 1:50 pm she called. I was right, we have a new care plan.
Evelyn is coming home...on oxygen with a pulse ox monitor
She told me that Evelyn is doing very well and that she just needs a tiny amount of oxygen 0.02L of flow. Mathematically (not taking into account the % of oxygen), this is 100 times less than what she started out with. They can't even set the machine to give her a smaller amount of flow of oxygen. However, this small amount is still necessary and the doctor feels like Evelyn should come home, be in her natural enviornment and get into a routine. We will follow up with a pediatrician at the hospital and then transfer to our pediatrician after Evelyn is weined off of the oxygen completely. If the equipment comes in today (which it probably will), we will be trained tomorrow at the hospital, stay overnight at the hospital, and come home Sunday. If the equipment doesn't come in today, she will come home on Tuesday.
I hung up immediately called Scott, crying, of course. Once again, he was my rock :) Reassuring me that it will be ok and that we can do this together.
My mind is racing:
- am I going to be tied to her room?
- is it portable?
- how big are the machines and oxygen?
- do I need a family member to come and stay with us or is it better to be on our own?
- where are these darn ants in my house coming from? gotta get rid of them...
- We are both CPR certified (as of last night)
- At least she is coming home on a pulse ox monitor so we will know when her pulse ox goes down and we will be able to help her
- Our Sunday School and other friends have graciously been providing meals and time to help us out
- We have prayer warriors all over the country!
- I think I have everything we need...think!
"Give thanks in everything,
for this is God's will for you in Christ Jesus."
for this is God's will for you in Christ Jesus."
1 Thessalonians 5:18
When I am afraid,
I will trust in You.
I will trust in You.
In God, whose word I praise,
in God I trust;
I will not fear.
What can man do to me?
Psalm 56:3-4
You might want to plan to put a crib, cradle, or co-sleeper in your bedroom with you. That way you don't have to always be running into the other room. You'll also sleep better knowing she is near.
ReplyDeleteYou can do this.
No doubt in my mind that you and Scott together can handle this! You two are awesome together sharing strength from one another! We will continue to pray for your strength as well as little Evie's! We love you all!
ReplyDeleteHey Cassandra,
ReplyDeleteI know we haven't talked in like 10 years (!), but I have been following your story and am so blessed by your love for your daughter and the Lord. Thanks for sharing.
Stacie (Sparks) Saenz
You will do great. She needs your love the most. Everything else will fall into place - you have a great team of doctors for the doctor stuff. They need you for the mom-care. You can't make that in an oxygen tank- and it's probably more vital. Take her home and cuddle with that cutie- finally you get this sweet moment. Cherish it and don't worry too much. My prayers are with you. -suzy
ReplyDelete