I’m not going to lie. I was really happy when the Glenn procedure was over. We talked about it for six long months. We planned for it and looked forward to it and I got really nervous for the week before it. And then it happened. And it was successful (successful in that the shunt could be closed off and both superior vena cavas connected properly and he had good blood flow and Ryan didn’t die on the table – sorry, but we moms think about these possibilities). And then a week later they closed up Ryan’s chest and it too was successful (again, successful in that there was enough skin, that there were no gut issues, that the heart tolerated it’s new environment and Ryan stayed stable through the whole thing).
All I could think about after that was home. And the goal of getting there. And perhaps having it happen within a month or so. You know, four times the amount of time it takes a normal Glenn to get home (normal = 7-10 days), but we are talking about Ryan so I wanted to give him some room to be his unique self. I fantasized about having Ryan home for Natalie’s birthday and thought about having him dressed up like a hospital patient with an IV pole hooked to his stroller for Halloween. And Thanksgiving. And family pictures. And Christmas. It was going to be grand.
And now the honest part – the part I am struggling with, the part I put off on a daily basis so I don’t lose it. The part I am coming to grips with and psyching myself up with so I can reset my expectations and get back to living my life.
The Glenn wasn’t the magic bullet.
There I said it. It’s out in the open. I was hoping, no more than hoping, thinking… thinking the Glenn was our ticket out of there. And it wasn’t. Here we sit in the CICU eight weeks post chest closure (nine since the Glenn) and we’re back to square one… Ryan is vented, has so many lines coming out of him they are clipped in neat little groups to his bed, is on IV meds and oral meds around the clock and some PRN (as needed). He’s on slight sedation to keep him comfortable on the vent. His arms are restrained so he doesn’t itch or pull his ET tube out. And he lays in his bed smiling at nurses who are now familiar faces for more hours of the day than I care to count.
Yes, bring out the violins and the pints of chocolate ice cream (although I prefer mint chocolate chip or cherry vanilla) and the box of tissues because it’s about time we all sat down and had a really good Marquiss family pity party.
Oh dear… I really wish I didn’t just look up and see a (muted) Head and Shoulders commercial with Troy Palomalu and literally laugh out loud. I was on a roll there. You’re not supposed to laugh out loud at your own pity party. (If you don’t know who Palomalu is, trust me, it’s funny he’s in a shampoo commercial.)
And, shoot! That means the pity party is over. Here I am chuckling at Palomalu feeling better already. And honestly, you guys know that by now if I’m actually telling you how I feel, then well, I’m basically over it anyway and moving on. I am moving on, but I’m giving myself until Monday to get back into the organized, ultra-scheduled, exercising-mama routine of things. I’m off for the rest of the week, people. I’m not exercising (gasp!), I’m eating junk food (gasp!), and I might even take a nap on Saturday (I know, unbelievable). So sit back and relax, eat the rest of the ice cream if you must, and know our family will be okay.
(c) 2016 Leighann Marquiss
Comments (10)
That’s exactly how I would take the rest of the week off, also! I will be praying for you to get your precious baby home and for God to sustain you all. Ryan is so sweet, I wish I could hug him.
I think you deserve to have a pity party sweet Leighann, but I am glad it was a short one, cuz it is better to hold on to hope.
I wish I could give you a hug and be there to encourage you, but since I can’t, I will give you a cyber {{HUG}} and just remind you how many people are praying for you and Henry and the girls,…and especially for Ryan!
We all want to see Ryan go home! We are anxiously awaiting that day, and praying it will happen soon.
Love, Linda @ Truthful Tidbits
You so deserve a pity party after all you have been through and continue to go through. God has given you an amazing amount of strength, although it’s hard to believe that sometimes when you feel like crying, but he obviously gave Ryan to the right parents. Laughter as you know is always good for the soul, and one day you WILL all be laughing together and the day your hear you sweet precious children laugh together will bring tears of absolute joy to your eyes.
I would love to hear that Ryan can be home with you soon!! I’m going to keep praying that it happens. In the mean time, you deserve time off and you deserve junk food!! BEST WISHES AND GOD BLESS!!!
http://www.ryanschd.blogspot.com
I believe that sometimes the only way to laugh is to allow the pity, grief and sorrow to come out. This is when there is, if only for a moment, space for joy, hope and maybe even laughter.
Praying for your Ryan and family.
Leighann! I agree that you deserve to have your time to shed tears, eat all the junk food you want, laugh like crazy, take naps, have a pity party make the best of it and most of it. It’s human nature that we all go through those ups and downs and in the end you’re right your family will be okay. Because God is so good, good all the time, His will, it’s almost like a test of faith to see how much faith/trust we put in God to pull us through and He will. Continuing to pray for Ryan & your family. 🙂
Life in the ICU is 2 steps fwd, 2 steps back… You know the speech -I am sure you have gotten it a number of times, but it’s true. Little guy is so strong, he’ll pull thru. It won’t happen over night but one by one those lines will be pulled.
Sleep in, take a bath, eat lots of fattening food and watch a movie – the other speech I am sure you have heard is you can’t take care of him if you don’t take care of yourself. Embrace that one!
Kirsten
Bless you! I’ve actually been thinking about this quite a bit and even though I don’t know you I suspected you were struggling based on what you were and were not posting in the blog. You are always in my thoughts and prayers!
Oh, and since it’s your party you can laugh and cry at will! I love it when God provides comedic relief!
This is your mom. You remember what God told you from the beginning and don’t give up on Him. Man, it is hard sometimes when we are in the midst of the storm, isn’t it? I hate it. Imagine yourself in a big strong ship with the winds and waves threatening around you. Christ is the ship. Hang on tightly to the sides and don’t let go. Everything is gonna be alright. Remember?
We (that of course that includes your PaPa) are in constant prayer for you and Henry and your sweet little family. Luv ya
Leighann- I just want to thank you for being human and putting it all in perspective! As the lone CICU RN posting…take Kristen’s advance and meet your needs and Ryan’s by taking care of yourself! I am sure that it is easier said than done, but sometimes, we just have to take life minute by minute. Take a minute to look back over Ryan’s life and look at what obstacles he has surpassed already. It will all work out…just not on your time table:)