I spent a good deal of time with our new doctor today. She sat with me for a while, outlining her plan for the upcoming weeks. Her MO-- slow and steady. She doesn't believe in pushing babies faster than they're ready to go, only to have them backslide. She's a mom, and made several mentions today about how she tries to think of how her Mom-self and Doctor-self can work together for the good of the patient AND parents. To that end, she wants to get us out of the hospital ASAP, but not until Parker is good and ready. That means slow weaning of his oxygen, plenty of time for adjustments, and administering treatments that will make P-nut's jobs (eating and breathing) easiest. It's not going to happen next week. Or the week after. Or likely, this month.
As deflated as I felt to hear that we very well could be here another 6 weeks depending on how Parker does, I was nonetheless grateful to be having discussions of home at all. Not too long ago, we weren't sure we were making it out of there alive. In the grand scheme of things, another month or so isn't that long to wait. Still, I am just so very ready to have my chickens all under the same roof.
It hits in the strangest of times-- we went to a 4th of July themed birthday party Saturday night (happy birthday to sweet Lyla!), and Jeremiah was of course suitably attired in his red, white, and blue. Mike was at the hospital that day, and got Parker dressed. He sent me this picture and text message:
"All ready for the party, Mom!"
I just fell apart, which is most definitely not the reaction Mike thought he would get. I would have moved heaven and earth to take my little P-nut to that party, and I got hit full in the face with the heartache of leaving him in the hospital to go about life as usual. It's not a daily struggle like I thought it would be-- I am able to walk out of there everyday and get some degree of restful sleep because I know down deep in my bones he is being very well cared for when we are not there. I know that Mike and I are doing the best we can to spend time with him. Still, it sneaks up on me and causes inconvenient emotional breakdowns in the middle of the Magic Kroger.
Hurry hurry hurry.
In other news, Parker's methadone has been weaned further (only once a day now). He still gets diuretics to keep fluid from accumulating in his lungs, and that hopefully will allow some weaning of his oxygen flow this week. He's currently on 3L at about 25% oxygen. When he gets down to 2L, we can start attempting some oral feeding. When he gets down to 1L, he can move to low-flow oxygen. THEN we can start talking about getting out of there, even if it means oxygen support at home.
All in God's time.
He knows what Parker needs, and He blessed Parker with a very strong ability to let everyone around him know what he needs.
Parker DID get his first tub bath today, which he enjoyed greatly. So much so that he fell slap asleep in there. I did a terrible job of taking pictures.
**What's up, PS, with the light colored hair??? Whose baby is this?**
And... Happy Six Week Birthday (from Friday)! Love the sleepy smile.
Sweet Gidge, love you to pieces and am praying for time to move right along so you will have all of your babies snuggled in your arms at home. Next time you fall apart in the Magic Kroger, you better call me sister. I would be there with coffee drinks and Krystal chiks and cheese dip and a great big hug to help soothe your soul. Love, love, love you and admire your grace and strength daily.
ReplyDeleteDear Abby, this is a tough road, the waiting to come home. In Sam's early weeks, I remember just wanting them to save him. Home seemed so out of the picture at that point. But you are in the stretch where you can see and taste some kind of normal life with your family all together. And it is coming. But yes, one day at a time. Slow.
ReplyDeleteWe came home one year ago and I am stunned by how much Sam's beginning has faded. You will get here too.
Love the sound of your new doc and her Mom-Doctor integration. And love that you are still writing with humour and honesty. Blessings on your head, CDH mama.
Corinne
Mama to Samuel, lcdh, Feb1/11
www.samuelslight.blogspot.com
Abby you are untitled to a melt down when ever you deem fit. In the middle of magic kroger or starbucks it is your choice. You are a wonderful mother don't ever forget it.
ReplyDeleteOh boy. It breaks my heart to hear the undertones of frustration and eagerness in your tone. Because I remember what you're feeling so well. For us Type-A teacher types who like to have a lesson plan, accomplish said plans and put neat little check marks as each goal is met (and do it efficiently, thankyouverymuch), this part is downright infuriating. It's hard to not have total control over the details ("Can't we try weaning this oxygen a little today? Who turned this flow back up while I was gone?") and to want to push them, maybe just a little harder, because we know they're made of the stuff we're made of and that just maybe they can handle it. These days are excruciating. But someday soon you'll look behind you and say, "Wow. We really did accomplish a lot. Look at where he is." And then you'll load him up and take him home. :) Patience is not my thing. Nope, not at all. But I've certainly been stretched that way the past 15 months. Praying for you all. Much love!
ReplyDeleteSoon this will all be a memory with a happy ever-after ending. Life takes time and your P-nut knows his own clock. He will be home when he's strong enough and ALL of you can PARTY!!!!!! Hang in there, sweet family!
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