Life with One (1) Medically Complicated Infant: The Tricky Bits

In my last post on this subject., I gave a rundown of what an easy day with my son was like when he first came home from the NICU.  Those days were pretty straightforward if exhausting - but I managed to get between 8-10 hours of sleep a day (although none of it was in chunks longer than 4-5 hours), eat three meals, and generally get a chore or two done around the house.

If it was a tricky day, I got 8 hours of sleep, a meal eaten while doing something else, and prayed that my back wouldn't be permanently damaged from any of the gymnastics.  These days also meant that I generally had no downtime between two feeds or I did a tube-feed with Jack in the backseat of the car while one of my parents were driving us to or from the doctor's office.

Here's what I remember from three tricky items: bathing Jack, medical appointments, and in-home therapy visits.

Bathing the Baby:
We bathed Jack about once every 7-10 days.  I'd wipe him down with wet-wipes every two-three days, but eventually he'd get grungy enough that he needed immersion in water.  The tricky bit was that Jack had a feeding tube and nasal cannula taped to his face - well, actually there was a base layer between his face and the tape, but you get the idea.  Removing the wires, feeding tube and nasal cannula was simple especially since we only removed it when the base layer was coming loose on its own.   The exhausting bit was replacing everything after the bath. 

Expanded for details.  The beige layer visible on his cheek is duoderm which had a sticky bottom layer that wouldn't remove skin and a textured top layer that we stuck surgical tape and tegaderm on.  The white layer is surgical tape; it was the adhesive layer that held everything in place.  On top of the surgical tape was a layer of tegaderm which is like a sticky saran wrap to make it harder for Jack to pull anything free.  He's got his orange NG feeding tube in his right nostril.  The small black and white cords are attached to his chest.  The thick white cord is attached to the oxygen monitor on his big toe.

Here's how I'd bathe Jack:

Pre-bath prep:

1. Turn off monitor.
2. Remove taped layers from Jack's face.
3.  Cut the feeding tube and nasal cannula free of the layers of adhesive.
4. When Jack was on 24 hours a day of oxygen, replace the cannula using the slider on the tube to hold it in place.  If he was being bathed during a oxygen wean, hang the nasal cannula on the flow meter or throw out if it needed to be replaced.
5. If the NG tube was >14 days old, throw it out.  If under 14 days, take the NG tube over to the kitchen sink.  Use 10mL syringe to force 5-10mL of whatever pop we had on the counter through the feeding tube to dissolve any proteins that had coagulated in the tube.  Drop the tube into about 1/4 of a cup of pop to clean the outside.  
6. Take off Jack's clothing.  Remove the chest leads and stick them to the diaper wipes container.  Remove the toe lead and lay it in the box of assorted medical items. 
7. Swaddle the baby in a bath towel and lay him in his bassinet.
8. Put the baby bath on the sink and fill it.  Get soap and washcloths ready.
9. Remove Jack's diaper.  Put Jack in bath.

Bathing him was pretty standard; if he was attached to the nasal cannula, that would trail up and out of the bath tub.  I'll skip those steps and start back up with Jack laying on the dinning room table we converted into a changing/medical station wearing a diaper with a large receiving blanket or dry bath towel under him.

Post-bath work:

1) Fish the feeding tube out of the pop and rinse it in water.  Carry it back to the baby.

2) Cut a length of surgical tape about 4 inches long.  Rip in half.  Attach the pieces to the flow meter so I won't lose them.  Tear 3 one inch pieces and attach to the flow meter.

3)Use the towel or receiving blanket to straight-jacket Jack's arms.

4) Measure the depth that the feeding tube needs to be inserted by placing the tip at the nostril that it will be inserted in, run the tube to the earlobe on that side of the head, then to a point halfway between the xiphoid process (bottom of the sternum) and his belly button.  (Jack traditionally thrashed his head around during this part which made it insanely complicated.) Twist one of the pieces of surgical tape all the way around the NG tube leaving two sticky ends free.  Lay the NG tube out of the way where neither the baby nor I will get the tape stuck on us.

4) Take out a sheet of duoderm, a roll of tegaderm, and scissors.  Cut the duoderm into a barbell-shape where the thin bit fits on the skin between Jack's upper lip and nose without touching his upper lip.  Remove the backing.  Pin Jack's head in place while placing the duoderm on his face without stretching it.   (Angry growls from the baby should be ignored.)

5) Lubricate the tip of the NG tube with saliva.  Insert the NG tube by pointing Jack's chin upward and aiming the tube for the dark space in his nostril.  Quickly and smoothly push the tube inward until the tape is reached.  Attach the tape to the duoderm under his nose.  (Counter-intuitively, Jack never put up much of a fuss during the actual insertion - probably because from his point of view I wasn't messing around with his face.)

6) Check the tube for placement in the stomach by attaching a 10mL syringe and suctioning.  When it is in place, stomach fluid or formula will appear in the tube.  (Honestly, you'll know if it goes in the trachea LONG before this point.  It happened once.  Jack's face turned bright red, he started frantically waving his arms and thrashing his head.  We pulled the tube out in less than a second and he was fine.)

7) Lay the NG tube along the tegaderm on his cheek.  Use the 1 inch pieces diagonally across the tube to secure in place. 

8) Lasso the nasal cannula around his head.  Tighten the slider in the back.   

9) Cut a length of tegaderm.  Remove backing and place over the NG tube and nasal cannula on one cheek.  Cut another length.   Use to secure the nasal cannula on the far cheek.

10) Replace the toe electrode.  

11) Replace the chest electrodes.  Cut two short lengths of tegaderm and place over chest leads to secure.

12) Turn on monitor.  Redo toe electrode as needed.  

13) Dress baby.  Look at clock.  Start feeding routine.

Medical appointments:

7-10 days before:

•  Get one of my parents to come to help wrangle Jack's equipment.

Night before:

• Check his medical go-bag to see that it contains an entire NG replacement set (NG tube, duoderm, surgical tape, tegaderm, scissors, 10mL syringe), a replacement nasal cannula, a 2oz syringe for feeds and an unopened bottle water.
• Make sure the diaper bag has diapers, wipes, Vaseline, a spare outfit, a burp cloth, a pacifier and toys (once he got old enough to be interested in toys.)
• Check that the travel tank in the shoulder bag has enough oxygen for the trip.  Replace if needed.

After the last feed before the appointment:

• Put car keys and wallet in pockets.
• Mark bottles with feed times that will occur during the appointment plus one extra. Place medications in the correct bottle.  Place bottles into diaper bag (which is an insulated lunch bag.)
• Place diaper bag into the giant bag.  Bring giant bag into dinning room.
• Put baby on changing table.  
• Detach monitor from electrical outlet.  Verify that the battery is working.  Put monitor in giant bag.
• Use regulator on the travel tank to set the oxygen flow to 0.5L. Detach nasal cannula from oxygen concetrator.  Attach to travel tank.  Place travel tank in giant bag.
• One adult picks up baby.  Second adult secures cords onto the first adult (so that the first adult doesn't trip on them) and picks up giant bag.  Walk out of the house, down the steps and to the car.
• Put the giant bag on the floor behind the car seat.  Secure Jack.  One adult drives; other adult sits in back with Jack and is in charge with dealing with the monitor if it goes off during the trip.

Upon arrival at the doctor's office:

• Adult who is not driving removes stroller from the trunk, arranges the oxygen tank, monitor and diaper bag into storage under the stroller, removes Jack from the car seat, and secures him in the stroller.  Driver watches for anyone who might not see the adult running around the outside of the car and parks the car after Jack's brought inside.

The actual appointments are pretty standard. 

After the appointment, all of the previous steps are reversed.  Tube-feeding in the car was the same as tube-feeding at home except that the adult had to hold the 2oz syringe over Jack's head to allow gravity to feed him so you have really tired arms at the end.

Therapist Visits:
Ok - truth in blogging time.  I like home-visits by therapists.  I get time to talk with an adult besides my parents or spouse plus the therapist is someone who was totally used to babies attached to medical equipment so I didn't have to explain anything to them.  Since I did home-bound tutoring when I taught, I know that therapists aren't mentally judging my housekeeping or organizational standards; it's not part of their job description.

The down-side: Babies can smell a therapist coming from a mile away and work at thwarting their evil aims.

• Jack behaved like his physical therapist was trying to kill him when she placed him on an exercise ball or laid him on the floor on a heap of mats and blankets.  
• He'd go completely limp and pretend that he didn't know how to support his head.  
• Jack had an entire act where he'd slump over while being held in a sitting position and cough dramatically 3-4 times.  Using his last bit of strength, he'd slowly raise his head up and bravely make eye-contact with the PT or OT before giving a weak, deathly ill baby cough.   I would burst out laughing and "verbalize" Jack's performance as "Lisa, I really want to work with you today - I really do.  But PT is making my multy-dwug wesistant tuburkuosis (multi-drug resistant tuberculosis) worse...so I just....can't.  I'm so weak...."  That would make Jack swivel his head towards me and glare at me because for siding with the PT.    

His antics were hilarious - but it's exhausting to have a baby acting like he's being killed for the better part of an hour even if you know he's fine.

Plus, no matter when we scheduled an appointment, Jack would be hungry and cranky by the end and I'd have no downtime between two feed cycles.

 For the first two months after he was discharged from the NICU, Jack averaged 0.5 doctor's appointments between his "normal" well-baby visits and specialists visits to the pulmonologist, cardiologist, neuro-developmental pediatrician, and optometrist  plus two therapy visits per week.

We were lucky.  Jack "graduated" from weekly PT at the end of the first two months and out of SLP at the end of four month into a single monthly appointment with a PT/OT early childhood specialist through Early On.  Our SLP acted as a medical liasion guru who got Jack into specialists earlier so that his care would be transitioned faster.  The optometrist found no signs of damage to his eyes so we just need a single yearly appointment until he's verbal enough to be checked at school.  His lung issues and persistent PDA didn't lead to pulmonary hypertension so his next cardiology appointment is when he's three.  We see the pulmonologist twice a year.

For kids with more substantial delays like Verity and Katie Musser or Lina, Olyvia, Rachele and Avi Carpenter, they could be entitled to three therapy visits a week each until they were enrolled in school (Speech, occupational therapy, and physical therapy) on top of well-child checks, any visits to the doctor for illnesses and quarterly/yearly appointments with medical specialists.  Additionally, if the kids are eligible for Medicare and receive specialist visits, the kids are often eligible for home care aides to help with daily hygiene function which adds an entire different layer of scheduling to the calendar.

Just writing this out is exhausting - so that's why I am extremely skeptical that families with multiple children with complicated disabilities are able to cope with a single stay-at-home mom and whatever resources they can cobble together - especially if they refuse governmental services as many CP/QF families do.....

Ting Ministries: Special Needs Adoption as Child Hoarding - Background

I feel sick. 

I've been covering the Musser Family (two parents, 15 kids total; one adopted special need child who drowned in 2013 [Tommy], two living adopted special needs children [Katie age 15, Josie age 15], two biological children with special needs [Verity age 7, John Michael age 12], and 10 biological children: [Not available for 24-7 care-taking: Daniel age 22, Joshua age 20, Laura age 18; current full-time caretaker: Jane age 16; everyone else: Stephen age 9, Peter age 11,  James age 11, Ben age 4; Nathaniel 2] since a year after Tommy died.

Good on Laura for getting free of the last four years of full-time care-taking for Verity and assisting with Katie.  I'm sorry to say that Jane's now not being home-schooled as far as I can tell and has been co-opted into Laura's full-time caregiver position now that Laura has a job.    According to the previous pattern, Susanna's adoption itch should be getting pretty bad soon.  Expect a new kid to appear by first quarter of 2019 at the latest.

Through their craziness, I learned about another family - Brian and Stephanie Carpenter - who have no biological children and are working on adopting as many special needs kids as they can. 

Let's take a look at their current family in order of adoption:

1) Sasha - 20 years old.

• Adopted from Ukraine at age 17 months with cerebral palsy (CP); in-country specialists stated that she had severe CP and would never be able to walk.
• Medical outlook: She has mild CP which means she's fully mobile on her own; she's an excellent student at a local college.
• Ministry Purpose: She has been told by her family since day one that "God saved you for a purpose."  Sounds sweet on the outside - but she's the main social media guru for her family's efforts to batch adopt kids on a yearly basis.  The family leads off with her story all_the_time which serves to minimize concerns that people have about medical reports on complicated special needs orphans - e.g., "Ukraine was so wrong about Sasha; I bet they're wrong about (insert name of orphan-du-jour)

3) Ellianna - around 13 years old

• Adopted: from Taiwan in 2007 at age three with moderate CP and profound deafness.
• Medical outlook: The Mussers blog implies that she's nonverbal, deaf and has severe CP (e.g., she cannot walk even with mobility aids).  Based on Ting Ministry's information and photos, a more realistic description is moderate CP, profoundly deaf with little intelligible speech- but fluent in ASL.  
• Ministry Purpose: She's photogenic and capable of age-appropriate interaction with other human beings.  She serves as a handy model for what the family can accomplish.  

3)Avi (Avigayl)  - around 12 years old; functions at infant level.

• Adopted: from the Philippines in 2009 at age 4.  Known diagnosis of severe cerebral palsy.
• Medical outlook: Added diagnosis of scoliosis.  Has severe developmental lags so that she functions at the level of an infant; I don't know if that is from a preexisting genetic condition or she was so malnourished prior to adoption that her body had to metabolize her brain to stay alive.  Until now, I had assumed it was from malnutrition - but in the summer of 2017, Avi and her family got a Make-a-Wish trip.  Make-a-Wish only funds "progressive, degenerative,  or malignant disorders that are currently placing a child's life in jeopardy".   Severe scoliosis can be life-threatening (the treatment is some rough surgeries) - but I am very worried that Avi has an additional degenerative disorder.   She's still a tiny little thing compared to the growth of her other adopted sisters - even ones with similarly severe disabilities.
• Ministry Purpose: She's lovely - and they don't update about her much.

4) Lina (Angelina) - around 10 years old; functions somewhere in the infant to toddler level.

• Adopted: from the Plevin Orphanage in Bulgaria in 2012 at age 5.5.  No notes on any of the blogs about diagnoses prior to adoption - but she was critically malnourished and weighed 12 pound at 5 years of age.  (For reference, my 9 month old adjusted son weighs 18 pounds and is on the skinny side.)
• Medical outlook: It all depends on how damaged her brain is from malnutrition.   She started walking this summer which is good for her body and makes care much easier.  Based on the amount of posts about the fact she's walking, I don't think she's had any other major breakthroughs in terms of cognitive development.
• Ministry Purposes: Did you notice she's walking!  She's walking now!  She looks like a healthy kid in a few carefully chosen pictures prominently displayed!  Now, when you dig around on the site, the candid pictures show that she's easily distracted during family photos - like the fact she's pulling Ellianna's hair in this year's Christmas photo - but did I mention she's walking!  Everyone knows that physical development mirrors cognitive development perfectly......  

5) Olyvia - around 14 years old; probably functions at mobile infant level - but the blog doesn't mention her much..

• Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 9 with her sister Rachele. Known diagnoses of spina bifida, cerebral palsy, autism, and severe, long-term malnutrition. 
• Medical outlook:  Same outlook as Lina.  She learned to sit and hold her head up within two months of coming home from Plevin -  which is great! There have been no new updates on steps forward for her since then - which is sad, but shouldn't be unexpected.  
• Ministry Purposes: They need one decent picture of her a year as an individual and one in the family Christmas picture.  Outside of that, she needs to stay under the  potential donors radar of how much work a nonverbal child who cannot walk takes on a day-to-day basis.  She can do this by looking in the general direction the camera and sitting independently in some photos.....

Have I mentioned I feel physically ill from writing about these poor kids?

6) Rachele - around 11 years old;  her functional age is of a newborn or less.

• Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 6 with her sister Olyvia. Known diagnoses of cerebral palsy, epilepsy and long-term critical malnutrition.
• Medical outlook:  Poor.  She grew 15 inches in her first year with the Carpenter family; that's the only update about Rachele so I am assuming she has severe cognitive impairments as well as physical impairments.  She will need extensive medical and daily living support for the rest of her life - which may be shortened by her inability to describe pain or discomfort to doctors.
• Ministry Purposes:  She needs to look good in the family Christmas photo - and not do anything to draw people's attention to the fact that she's severely disabled.

7) Hannah (Annie) - around 15 years old.  

• Adopted from China in 2016 at the age of nearly-14 with moderate cerebral palsy.  Any questions about how fair being placed in a home with four severely disabled sisters and one sister with disabilities who uses a form of sign language Annie's never seen were swept under the rug with "If she's not adopted by 14, she will NEVER be adopted!"  I really hoped the adoption fund-raising would fail for Annie's sake; it succeeded.
• Medical outlook:  Pretty solid.  Based on photos, she's still wheelchair-dependent for long outings - but she may be using crutches or a walker for shorter distances at home.  Educationally, she graduated from 8th grade.  Assuming she's acquired English at an average rate, she's probably comfortable with conversational English by now.  The main educational issue is trying to make up any content area deficits with a teen who is still between 1.5-3 years away from developing  academic English while she receives intensive physical therapy (hopefully, she doesn't need any surgeries) AND before she reaches 21 years of age.  That's a lot to do in six years - and her family has 4 children who need full-time care plus her slightly younger sister who needs a lot of care now.

Once the Carpenters got Annie home, Sasha spear-headed a media blitz to raise $20,000 to refit their family home so that the girls could get around using their adaptive equipment.  Nothing says "good planning" like remembering that the kids can't move around the house until after you've adopted 6 kids who have major mobility issues; Susanna's always a bit more forth-right than the Carpenters......  (Added bonus in the linked Musser post: Susanna decides that she needs to explain to Josie - who has moderate CP herself - that Annie's moderate CP means that she can't get her body and mouth to do what her brain wants them to do - but Annie's still really smart.  Josie replied, "I get it."  I'm really curious what Josie was thinking during that interchange....and what she thinks of her adoptive mother.)

The fundraising bonanza failed; they raised around $7,000.

On a totally unrelated note, the Carpenter Family remembered in April of 2017 that there are two girls with some unspecified disabilities living in China the Carpenters want to adopt - if they can raise $45,000. 

After all, at some magic number of children, people will cough up the dough to get a house that the kids can live in comfortably - so let's keep racking up the kid count.

It's not like the Carpenters - and the Mussers if they wanted to - could fund-raise to help disabled kids in China instead of bringing them to the US into their overextended family.   No....that's too much disinterested generosity and too little praise for the Carpenters.

I feel sick.