Could you please pray for our family?
Misfortunate has just been unrelenting for a very long time now. We surpassed "one thing after another" a long time ago and I am so worn out.
There are random small things this week - the dog has an allergic reaction, a random food poisoning episode... and then the rest of the summer...
We have had just about every major appliance break. The fridge, the washer, lawn mower, and computer have all given out in the past couple of months. Along with expensive car repairs.
Danley has had random severe back pain that comes and goes and recently, strange heart burn.
I continue to fight a sinus infection that has been through 3 rounds of antibiotics and will. not. give up. The Dr. recommends surgery to correct my deviated septum which I can not even think about right now.
My mom is still struggling with immense amounts of back and leg pain that are preventing her from walking, getting around or basically living life. She is mostly confined to bed and continues to undergo unpleasant procedures and take large quantities of painkillers just to make it through the day.
And then there's Kiersyn.
Kiersyn is 6 months old now. Still spends the vast majority of her time crying, unless she is on one specific medication - Carafate - which is not safe to keep her on long-term. She can not have solid foods without absolute shrieking, screaming and tearing at her stomach all night and spending the next day crying all day. Her reflux seems worse not better and as her Doctor told us at the last appointment "This is a long, hard road." It may get better, it may not. It may go away, it may not. She may be medicated long into her childhood and the hope there is at least she will be able to explain when she is hurting.
Tomorrow morning Kiersyn has an endoscopy to look at the inside of her esophagus, stomach and small intestine - they will also take biopsies of the lining of the esophagus and stomach to check for infection, GI disease and syndromes, see how much damage reflux has caused so far etc.
I am avoiding thinking about exactly what is happening tomorrow but I know it will be very difficult to send my child off with a doctor to be put under.
The hardest part about Kiersyn has been trying to explain to people what we're dealing with. Other reflux moms, who know exactly what it is like and understand the "reflux roller coaster" of good days/weeks vs. bad, terrible days have suggested sharing a diary of a bad day with friends and family to help them know what it is like since most people see her only at her best. I did that today until right before Danley came home from work. This is not a fun read, but if you want to know what a typical day with reflux looks like, here it is:
6:17am
Kiersyn awakens screaming. She is thrashing. It’s time for her Prevacid. I stay with her and rub her belly, though it does nothing to comfort her. We can not take her out of bed. Picking her up makes her angrier. Danley brings her pill and gives it to her with some water. In a few minutes she settles and falls back asleep. We go back to bed.
7:25am
Kiersyn is awake again. She is stirring and whining but not screaming. Danley gives her a bottle and brings her to me - it is time for him to get ready for work. Sometimes she will sleep a little longer in bed with me, but not today, she is tossing and turning. I take her to her room and change her diaper. It takes several minutes because she is arching and trying to turn her body to the left in an attempt to straighten her esophagus and clear her throat of acid.
8:15am
Since she seems relatively ok, I put her on the floor to play. Within ten minutes she is fussy and then crying. She pushes her face into the ground and screams, throwing her legs against the ground repeatedly. She is not interested in toys, being rocked or bounced.
8:30am
I take her outside to the swing. This is the only thing that calms her when she is having a minor episode. As soon as we begin to swing she begins to calm down. Despite the fact that it is already over 90 degrees and we are both dripping with sweat, she allows me to swing for nearly an hour. During this time her eyes drift open and close several times and when they open, she grimaces.
9:22am
Kiersyn has been completely calm for about 10 minutes so I decide to try and get a shower in. We go inside and I put her in her exersaucer and I jump in the shower. She is quietly playing for about 4 minutes when she lets out a piercing scream. I am out of the shower in 30 seconds, and grab her from the exersaucer where she is throwing her head back and forth and flailing.
9:30am
I try bouncing, back to the swing outside, swaying with her, talking, walking… she will not be comforted. So we sit in the rocking chair and she screams and cries, arches, throws herself back and forth and writhes in pain. Every once in a while she chokes and swallows her reflux. This continues for over an hour. When she is this physical, I struggle to hold her and keep her from hurting one of us – she weighs 20 lbs and is very strong. She grabs and claws at anything within reach. She takes her pacifier for about ten seconds and her eyes roll back in her head in absolute exhaustion. But just as she begins to relax her face contorts, her eyes well up and she shrieks again. This happens 5 more times. I rub her belly, pat her back, sing to her and rock her while she struggles.
10:32am
She suddenly falls very still and takes her pacifier. I lay her down in the crib and she begins to stir – tossing and arching. I press both arms against her chest and stomach. For some reason this pressure helps and she settles. She is asleep.
10:58am
She awakes screaming. I bounce her and swing her until she calms.
11:10am
I sit her on the floor to play. She immediately rolls onto her face and screams into the floor. I get out some books and read to her, she moans, whines and slaps her legs and the book as we read. At least she is distracted enough not to scream.
11:30am
It is time for a bottle – she takes 3 oz and refuses the rest. She has had only 12 oz in 19 hours. Her Dr. says this is because she is smart – she knows drinking more will cause her to reflux.
11:45am – 12:45pm
Danley is home for lunch and turns the TV on. She is distracted by the TV enough to let us eat and take turns keeping her happy.
12:50pm
Danley goes back to work and 5 minutes later Kiersyn refluxes audibly, chokes, gulps for air, swallows repeatedly and bursts into tears. She arches and cries while I try to calm her.
1:20pm
I strap Kiersyn into her harness, still screaming, and Velcro her down in her crib. She is still struggling, tossing, turning, arching and screaming but she is clearly exhausted and her eyes roll back as she tries to sleep but is kept awake by the pain. I put pressure on her chest and offer her pacifier until she finally falls limp and sleeps.
2:30pm
Kiersyn wakes up screaming and arching, I go in and give her the pacifier – she arches a few more times, falls limp and drifts back to sleep for 30 minutes more.
6 months of this is too much. 6 months more might make me lose my mind. It seems so unfair for such a little girl. It seems like enough is enough. Could you pray that prayer for us?
Kiersyn is scheduled for 10:15 in the morning.
Pray for rain.
