Colorado weather very adequately expresses how our life has been at home lately. Just when you think the weather’s gonna stay warm, you pull out your short sleeves, get a pedi, and flip on the baseball — the clouds roll in and it starts hailing! The rain and sleet stay for a few days, then out comes the sun again. With great weather, the Rockies make up the postponed games, we start making plans to build our front yard fence and get some slider windows installed downstairs. Then BAM! Thunder out of nowhere! And more snow……. This is the snowstorm I captured from Easter Sunday as an example.
This household has been much the same. Many good days… lots of really hard days. Our poor honey had way too much to contend with after her arrival home. First off, it was weaning from the methadone. When we finally made it through that, teething began! Just on the heels of teething came a nasty cold that hit all four of us. Each day is filled with therapies, doctors appointments, oral feeding attempts, restless nights full of crying, along with the normal life obligations, the important ones we try to maintain. Ear infections plagued Micah, and the terrible two’s decided to show up as well. Then we’ll have one really good day… kids are happy and giggly, Mom is alert and enjoying the calm, Dad is home his one night that week, laughing and wrastling around with the kiddos… all is right in the world. Then BAM! Another ear infection, tooth popping, and stressful day. I know you all don’t mind hearing about the chaos… but I wanted to wait until I was at a place where I could offer some really good news as well. I’ll do my best…
Well here’s some good news: Kaelyn has been very stable with her heart function. That hasn’t changed. She does have a small left pulmonary artery (LPA), but that’s something we’ve always known. Her diaphragm is still paralyzed on the left, however her need for oxygen actually has decreased over time. She’s been weaning herself, despite the sickness, altitude, diaphragm, etc. At least until recently… Let me back up and sum up our time at home since the beginning of March.
Micah joined a soccer program which he absolutely loves, Tony flew out to CA for his Dad & Pat’s wedding, our insurance agreed to pay for some in-home nursing during part of the day to help with the critical stuff, I kinda learned how to paint, we went to a Rockies/Dodgers game (of course the Rockies won!), had a filmmaker come interview us and record Kaelyn while we met one of the oldest living HLHS patients, I attended the birth of the newest Corbett addition, we celebrated babies & birthdays, had a trip to the ED for a yanked gtube and nearly closed hole, continued speech therapy, occupational therapy, and a barrage of weekly appointments. All of this in a month and a half! These are just the extras – in addition to Tony’s 2 jobs and fire department service, my taking care of a hilarious yet energetic 2-yr old while studying for a condensed CNA class, trying to keep up as a wife, mother, daughter, friend, and of course… Kaelyn. A full time job in and of herself.
So what’s the latest, you ask? Kaelyn held onto that cold longer than the rest of us, as we expected she may. She was handling it pretty well for a while, but this past weekend, she declined fast. As of today, the cardiologist diagnosed her current issue as Superior Vena Cava Syndrome (SVC Syndrome). Not a surprise, because it’s just a more serious version of what she’s faced since the Glenn surgery. Increased Glenn pressures in her upper body, plus a paralyzed left diaphragm, plus a small left pulmonary artery, plus some kind of cold equals fluid leakage in her lungs, poor blood flow, lower sats, a painful headache, cough, and a risk to be hospitalized. What she really needs is her diaphragm to start working!! This alone could possibly take care of the issue. If that’s not in the near future, then she needs a cath procedure to open up her pulmonary artery branches. They don’t want to cath her (especially because of the sedation risks) until she’s over this cold. Remember when she came out of her 2nd and 3rd heart surgeries with sats in the 40’s and 50’s?? Well one possible explanation for that was because she had rhinovirus at the time. Yeeeahhh we don’t want to go through that again. So she needs to get well!! In the mean time (while trying to get her well), the main goal is to stay out of the hospital. As long as we can keep her nose suctioned, increase her diuretics to help with the fluid, keep infections at bay, and make sure her sats stay above 70, then we may be able to sidestep the hospital for now. I’ll have help. We’re trying to increase nursing hours here at the house, at least temporarily, in an effort to keep her far from the hospital.
Right now, we’re so soooo tired. As I type this, Kaelyn has been crying (while Tony and I take turns trying to comfort her) for the last 4 hours straight… all day really… and hasn’t taken a nap or slept since lunch time. It’s 10:30pm. I was up doing this same thing with her at 5:30 this morning. This day is just an example of the many just like it in the months prior. These are rough times. Please pray for STRENGTH and patience for us all. In addition of course to the HEALING that we would like to see happen – the time is NOW that we need that healing. The doc said the next 24-48 hours are critical for her. She will either get better or get much worse in the next couple days. And we all know the possibility of getting better is there! The chance of spring amidst our cold dark winter. I was SO ready for the winter to be over when we got home from the Glenn. It’s hard not to be disappointed that we are still facing such critical possibilites and struggles this far out of surgery. I guess this is one of those times we’re reminded that all we can do is trust in Christ alone to pull us through this. To carry us into the SPRING we’ve been longing for. I’ve been reminded of that hymn from a couple different places recently — that, I think is no coincidence.
In Christ Alone
by Keith Getty & Stuart Townend
IN CHRIST ALONE my hope is found,
He is my light, my strength, my song;
This Cornerstone, this solid Ground,
Firm through the fiercest drought and storm.
What heights of love, what depths of peace,
When fears are stilled, when strivings cease!
My Comforter, my All in All,
Here in the love of Christ I stand.
In Christ alone! – who took on flesh,
Fullness of God in helpless babe!
This gift of love and righteousness,
Scorned by the ones He came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied –
For every sin on Him was laid;
Here in the death of Christ I live.
There in the ground His body lay,
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave He rose again!
And as He stands in victory
Sin’s curse has lost its grip on me,
For I am His and He is mine –
Bought with the precious blood of Christ.
No guilt in life, no fear in death,
This is the power of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I’ll stand!
