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.....