The first year that Sophia was born, a friend was at my house. She noticed that I had started writing a list on the window. All the extra things I needed to remember, on top of having a new baby at home. She sighed and exclaimed sadly "Oh, Jennie". She saw me 💗. Fast forward 7 years and that list would look like child's play to me now.
Then after Sophia was a couple years old I had met a few adult children like her and their parents. It seemed like they never got out of the house and I was determined that would not be us.
It's kind of us.
Sophie's nurse said something the other day that really changed my paradigm. She noticed that having a baby is hard, but the good part is the older they get, the more independent they get, therefore the easier it gets. But with Sophe it's the opposite. The bigger she gets, the infinitely more complicated she gets plus the harder she is to move around.
I felt seen again by my nurse. When it feels really hard, well that's because it really is.
This is Sophie's schedule today. It can vary a little, there's a couple nebs we could add or take away depending on how she is. But this is pretty much it from now on.
Typed up and put in a binder titled "How to take care of Sophia.":
Sophia's Daily Meds and Interventions
*Goal volume is 800mls. Rate is running at 45mls/hr. When she gets to 800 (and not before, over is better than under) switch to water and increase the rate to 60mls/hr. Switch to milk and clear the timer at 8am
*Flush each syringe after each med to get all those flakes in!
*Change site gauze every diaper change. If there's a rash put on a mix of triamcinolone and nystatin with a qtip.
*Vent g tube every hour and move any stomach content into the j tube. If more than 15mls hold feed for 10 mins.
*Every time I give meds, rinse syringes and cut and start new ones soaking.
**whenever I have time in between all of this, try to do as many "fun things" for Sophia as I can. Like...putting her in the living room; painting her nails; take a bath; blow bubbles; read her a book; snuggle; watch a show; play with toys; give her a massage. BARE minimum is one fun thing, plus going outside once a day (sit on the porch, lay on the grass, go for a walk; swing in the hammock)**
Upon Waking (don't let her sleep in past 8am)
Take bi-pap off and put nasal cannula on
Soak rinse and dry neb cups
Switch back to milk, change the feed rate to 45mls/hr
Change her diaper and site guaze
Weigh her
Work on constipation
Put her leg brace on left leg and move pulse ox to the right
shaker vest and cough assist treatment
stimulate a cough and suction
8am
levetiracetam (1/2 tab)
topiramate (1/2 tab)
hold feed for 10 mins
a bolus of miralax: mix 30mls of water with 1 cap miralax. attach to her med port and push in 10mls every 10 minutes, once empty wait 10 minutes and resume feed
9am
Move leg brace to the right leg and pulse ox to the left
2 puffs pro-air
Take nasal cannula off and hook oxygen to bipap
Put chinstrap on
put bipap on
1 vial sodium chloride at the same time as a shaker vest treatment
take bipap and chinstrap off
cough assist treatment
put nasal cannula on
suction nose with saline and bbg
11:00am
clonazepam (1.75 tabs)
baclofen (1/4 tab)
levetiracetam (1/2 tab)
another tab of senna if she hasn't pooped yet
hold feed for 30 minutes
move leg brace to left leg and pulse ox to right
take nasal cannula off, hook oxygen to bipap
change diaper and site guaze
put chinstrap and bipap on
wrap her up to go to sleep
1 vial of budesonide
2:00pm (wake her if asleep)
Brush her teeth
move leg brace to right leg and pulse ox to left
change diaper and site guaze
a bolus of miralax if she hasn't pooped yet
2puffs pro-air
1 vial of sodium chloride WITH a shaker vest treatment
take bipap and chinstrap off
cough assist treatment
put nasal cannula on
stimulate a cough
3:30 pm
levetiracetam (1/2 tab)
glycopyrrolate (1tab)
topiramate (1/2 tab)
hold feed for 10 minutes
4:30 pm
omeprazole (1 tablet) IN THE G-TUBE (this is the only med that goes in the g). Use 20mls of flush with this one only because the g-tube isn't used for feedings.
hold feed for 30 minutes
move leg brace to left leg and pulse ox to right
6:00pm
move leg brace to right leg and pulse ox to left
2puffs pro-air
take nasal cannula off and hook oxygen to bipap
put chinstrap and bipap on
1 vial of sodium chloride WITH a shaker vest
take chinstrap and bipap off
cough assist
put nasal cannula on
suction nose with bbg
7:30 pm
take leg brace off and put hand braces on. Move pulse ox to left.
change diaper and site guaze
pheno (1.5 tabs)
clonazepam (1.75 tabs)
baclofen (1/4 tab)
cyproheptadine (1/4 tab)
levetiracetam (1/2 tab)
take nasal cannula off and hook oxygen to bipap, put chinstrap and bipap on (don't use chinstrap if I don't have a nurse)
pulmozyme (1 vial)
hold feed for 30 minutes
9:30pm
pheno (1 tab)
topiramate (1/2 tab)
hold feed for 10 minutes
12am
pheno (1 tab)
levetiracetam (1/2 tab)
hold feed for 10 minutes
3:30 am
clonazepam (1.75 tabs)
glycopyrrolate (1 tab)
baclofen (1/4 tab)
4:30am
levetiracetam (1/2 tab)
topiramate (1/2 tab)
hold feed for 10 minutes
1 vial pulmozyme
5am
cyproheptadine (1/4 tab)
senna (1 tab)
hold feed for 10 minutes
1 vial of albuterol
1 vial of sodium chloride
So, this is just what I (or Jason, or the nurses) have to do to keep her alive/healthy. This daily schedule does not of course mention washing SO much laundry with multiple outfit and bedding changes from blowouts and reflux; sometimes constant suctioning; unscheduled meds for additional problems that arise; bathing; researching and proposing treatment options; addressing medical emergencies (which are becoming more frequent); finding my own supplies for things insurance won't cover; checking my support group for ideas (and to help others where I can); taking her to school occasionally and all that that entails (school has procedures too); keeping her room organized; unpacking boxes of supplies that show up; cleaning her equipment (suction canister.....barf!); swapping tubing and filters; researching equipment on my own when my options are limited by insurance; AND scheduling follow up appointments up north, making and executing travel plans, TRAVELING with Sophia and all of her machines and equipment!
AND THIS IS ALL WHEN SHE IS HEALTHY
And IF we keep this schedule up really really good, OCCASIONALLY we can take a couple days off (meaning just meds, food and nebulizers) for a (close) vacation, w/o her health sliding back.
NOW. I do have help. Thank goodness. I'm convinced w/o it she would have to be institutionalized😓. I am very lucky to have nursing. Not all families like us do. It is hard to fill the hours because nurses are sometimes hard to find. But atm I'm getting a few days a week of daytime and several nights a week of nighttime.
And then of course there's my amazing husband who works full time, plus a couple side gigs in the evenings. Who finds time to make dinner, do dishes and laundry, and takes over Sophia's care when I am needed elsewhere.
Of course I cannot relax during that time. Oh no, there is still so much to do. During nursing/husband hours. I need to:
-manage other kids' lives and take care of them (sports, extra curriculars, friends, school projects, birthday parties etc)
-meal planning and shopping
-cleaning
-TRY to take care of the yard 😅
-general to do list
-and of course more Sophie stuff that I can't do while I'm caring for her ... like communicating with ...
Durable medical equipment suppliers for her 7 machines; disposable medical equipment supplier; incontinent supplier; oxygen supplier (yup these are all different entities); drivers for these suppliers; technicians who come to the house to update/change/or train me on equipment; insurance (oh joy); that wonderful waiver we're on needs a yearly application, monthly report on Sophia, and a bi-monthly in home visit; her individual nurses; home health scheduling; the pharmacy; occupational, physical and speech therapists; her school; hospital discharge teams wanting to follow up; and of course I can't forget the most important...communicating with her 9 doctors offices about intermittent changes to her meds, machines and interventions. Also I cannot forget to relay those changes to home health because the nurses can't administer tylenol or even supplements without a doctors order!
*Currently (post hospital which is always an uptick) I am averaging 6-12 phone calls, emails, or appointments a day with the above list.*
-not to mention things like working out, showering, eating. I almost never get to do the budget, clothes shop for the kids or keep my electronics/emails/pictures organized. Read scriptures? Go to the temple? Pray? I try. I do get to take a nap almost every day. I'll usually pass out mid afternoon for a little while. My favorite part of the day is when the littles (Sophia and Max) are in bed and I get to watch TV with Jason and the teenagers (Michael and Sarah).
THANK GOODNESS FOR:
💘A husband who has literally never told me no when I need a break. Even though when she's choking (which is all the time) it reminds him of losing his daughter. I honestly don't know how he does that. I love him so much.
💘A plethora of humans who help me keep her alive. From her neurologist, to her nurses, to the pencil pushers, to the maids who sanitize her room in the hospital. I'm so grateful for all of these people.
💘Good family and friends who "see me" and let me lean on them. Who talk to me and get to know my inner thoughts. People who graciously accept that any plans we have (even big ones) could be cancelled last minute. Or that only one of us will show up 😉 Who are understanding when I forget to check on them and give me grace when I look scattered, or drift off into my own thoughts. And of course, there's our perfect little Southern Utah town, where the neighbors are always willing to help us in a pinch 😺
I will end with a portion of a quote from Elder Holland that a dear friend recently sent to me:
"A true Christian cannot follow the Master only in those matters with which he or she agrees. We follow Him everywhere, including, if necessary, into arenas filled with tears and trouble, where sometimes we may stand very much alone. I know people, in and out of the Church, who are following Christ just that faithfully. I know children with severe physical disabilities, and I know the parents who care for them. I see all of them working sometimes to the point of total exhaustion, seeking strength, safety, and a few moments of joy that come no other way" (he goes on to talk about other types of severe trials)
That last part really hits my heart. "seeking ... a few moments of joy that come no other way". It's like Holland really sees me. It's so true. If we didn't do ALL of this (with all of this help), we would miss out on her smiles, her coo's, that face she makes during therapy when she's really concentrating and so proud of herself, her sweet snuggles, and her belly laugh. Oh how I LOVE her belly laugh. One belly laugh could get me through a month of all this 💞 There is so much joy in this hard work.
And lastly a link to an amazing talk from a father, with a similar family situation. Sent to me by a friend, in a similar situation (except she has TWO Sophie's!):
What Happens When Life Gets One Degree Colder? - BYU Speeches
Anyways, if I don't see you for a few more years, now you all know why. Highlights from her most recent Primary Children's stay...
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p.s. and this is very important: some may read this and want to do more for us. I know it's counter-intuitive but having people over to help can actually mess up Sophie's treatments (b/c I'm social and I'll end up talking to you). So if you're wondering what else you can do, you're already doing it 😉 Just pray for us, and we'll reach out when we need you. In the meantime, THANK YOU to everyone, for just being there 💗💗💗 I'll write again when I can ;-)
