The last couple of weeks have been a seesaw battle. Doing well one day and not so well the next, but it seems I’ve crossed the hump from professional to recreational convalescent.
They sent me packin’.
It’s been a long road, gettin’ from there to here. But here we are indeed, giving up our “apartment” in the city for our house on the lake. Time to 5,000 it and unlax on the dock.
My heart looks pretty good, okay enough that I should be able to grow and thrive. That’s the thinking, anyway. Here’s hoping all the cow valves, duct tape, WD-40, and a little luck keep my wonky ticker together for long enough that I can gain weight and get some semi-permanent fixes.
The majority of my recent problems have to do with my long history of drug use. I used to be a heroine addict, now I’m a methadone addict. I’m also an Ativan and Clonidine addict, with most of the trouble coming from my unsuccessful attempt to wean off of Ativan.
When I need my hit, my taste, my sugar, I get very very upset. Take upset, turbo charge it, power it with dilithium crystals, spin up the FTL drives, give it a flux capacitor, and mix it all up in a blender and you get Ativan withdrawal. Screaming for hours and hours. Shakes. Vomiting. Diarrhea. Tachycardia. Loss of appetite. Pain all over. Inability to sleep.
It’s a joy.
When I finally get my regular dose, or an early “rescue dose,” I settle out and get back to flashing the usual smiles. The weans are going to take a long, long time.
Meanwhile, I’ve had some normal baby problems too, like oral thrush, which makes my throat hurt and pushes me even further off the bottle. So most of the food has been going through the tube. The hope is that when we get over the withdrawal humps and my throat clears up that I’ll eat more from the bottle.
Until then, the tube stays.
Assuming things are smooth and I get the “all clear,” in a few weeks or so we’ll have an open house here in Stow when you can all come and visit. Will keep you posted on any gatherings here on the blog, and will update periodically on general progress as well.
Before we call it a day, however, here’s some fun with me, by the numbers.
90: Days this hospital admission
126: Total days admitted since birth
166: My age in days
76%: Percent of my life living in the hospital
2: Heart catheter procedures this admission
4: Heart catheter procedures since birth
6: Heart catheter procedures since conception
2: Open heart surgeries this admission
90%: Percent of my left ventricle initially covered in scar tissue, now mostly removed
3 of 4: Valves in my heart moved or replaced
1: Replacement valve from cadaver
1: Replacement valve from cow
Unknown: How long they will last (some measure of months to years)
Unknown: Number of times these valves will need to be replaced over my life
50% or greater: “Percent systemic” blood pressure that would indicate I’d have problems with pulmonary hypertension
100%: My percent systemic when admitted
45%: My percent systemic now
9 lbs. 5.21 oz.: My weight when admitted 3 months ago
8 lbs. 5 oz.: My lowest weight this admission after surgery #2
10 lbs. 0.5 oz.: My weight now
320 grams: Total weight gain during admission
3.5 grams: Average weight gain per day during admission
20 to 30 grams: Average weight gain per day healthy baby
Does not compute: Where I fall on typical baby growth chart
82: Nurses assigned to cover me in 8 East and 8 South not including surgeries, clinic, x ray, cath lab, resource nurses, clinical assistants, etc.
29: Medications given to me this admission not including cath and surgery procedures
13: Medications I’m coming home with
1: Medications my cardiologist would like to see me on in a year or two (Aspirin)
4,145: Current Facebook Likes for my guest post on Children’s Hospital Blog
7: Hours it took my post to become the most popular piece of online content ever published by Children’s Hospital
12: Hours the Children’s blog was down after it crashed due to heavy traffic
49,658: Page views on www.echoofhope.org since October 2011
52: Countries of origin of www.echoofhope.org visitors in the last 90 days
467: Likes on my Facebook fan page www.facebook.com/dangerschultz since setting it up earlier this month
$1,303,593.62: Current medical bill since birth, not including fetal interventions and last three weeks of hospital stay.
Most of it: Medical bill paid by insurance
Countless: Words of support, encouragement, and love sent to the ‘rents and me in the last year
Immeasurable: Our gratitude
4 to 6 months: Plan to re-admit to Children’s to balloon my Melody valve
15: Minutes home so far…