Traveling with Special Needs and other ramblings

I am not sure if I will ever get the version of vacation I dream of. Honestly, that’s one of those, as long as My Angel is earth side, vacation will look “hard” to the naked eye, and often to my eyes. But a hard vacation is better than no vacation, and a vacation with your baby is better than your baby not being here at all. I long for Heaven, what rest that will be! No need for vacation, we will be in the arms of the King.

This week while traveling to see family… which of course isn’t gonna be easy, we needed a simple procedure. Simple, but… only interventions radiology can do it. The whole procedure takes about 10 minutes, but to make it through the ER and paperwork, and to get what we needed, even on a weekday, is EXHAUSTING. Chris and I joke d, “we been needing a date night, so here we are!” See the photo of us eating vending machine snacks at 9pm after four hours in the ER.

A Day In the Life: Travel Version

5:45am: started waking up my groggy little body after a late night of packing, checking, rechecking for suction bulbs, CPAP, feed bags and syringes

6:35am: pulled out of the driveway, Adventure on!

7:30am: midway through security check, Rynnie pukes a hard, sad, gut-deep puke.. is immediately covered in puke. Security line drama trying to make it through TSA (despite pre-calling TSA Cares.. which I do recommend if traveling with Special Family).

8:30am: board flight to see family and spend a week of glorious PTO on a beach with family but realize her Gastric tube is malfunctioning after all the retching,

8:40am: most people’s work days are just getting started, I am calling a hospital I am unfamiliar with to try to get in with Interventional Radiology for an easier procedure without a hospital admission for a tube replacement. I also post to my Physician Assistant moms and Philly Area PA moms group who were actually super hopeful. PAs do rock.

9am: flight out to Philly, not turning back now

11:30am: make it to Philly, stop at a BELOVED Wawa for long-awaited pretzels. Our son loses his first tooth on a soft pretzel. Memory made.

11:45: PAs from Penn, CHOP and Nemours are reaching out to me trying to help. Paperwork and procedures are still hard to navigate but easier than they could be. After flushing her tube, it seems that it’s working! Decide not to go to ER immediately and try to baby this one.

1pm: took a much needed dive in the deep end of Nana and Papa’s pool with my freshly swimming swimmer of a 5 year old. Rynnie naps

4pm: pick up Rynnie to get her to the car to go to beach and her G tube pours milk, a clear malfunction.

4:30pm: call CHOP and Nemours and learn that “Nemours will call on call IR team to come in for replacement, and “assured that they will” by ER triage team. CHOP says it’s a hospital admission and they will likely have to order her size tube (1-2 day admission)

6pm: arrive at Nemours Children’s hospital. Resident evaluates, takes long history. Orders x-ray. Xray is without contrast and shows not a thing. Other kids are with Nana and Papa, and of course we are worried about them. First night of vacation and without mommy and daddy at age 1 and 5.

7pm: still waiting

8pm: Attending comes in and says we can’t see anything, need imaging with contrast and then will call IR

9pm: xray with contrast complete, still can’t see anything bc imaging needs to be in the J tube and done by Interventional Radiology who still hasn’t been called

10pm: GI and Interventional Radiology are finally consulted.

10:30: they aren’t coming in. Admission recommended. IV line attempted and missed. Chris heads to beach with other littles. Rynnie begins to scream. Cry. Wail. Withdrawing from Gabapentin which I cannot give bc no functioning GJ tube.

11:30pm: Chris makes it to other kids. Rynnie still screams. I nicely requested nursing again… IV needs to be placed, baby girl is screaming and hyperventilating. Hospitalist agrees to order Intranasal Ativan.

… it never comes

12:30am: IV demanded, and placed. Rynnie has now been HOURS with no IV, no fluids. Lips getting dry and cracked, one diaper in the last 12 hours. She finally settled to sleep(ish). (The whole reason we are told we have to stay is for fluids and sugar regulation, tube malfunction).

1:30am: make it upstairs to a room

2:30am: settled, oh wait, just kidding, the respiratory therapist will be here soon…

3:15am: respiratory makes it and puts Rynnie on CPAP (breathing machine for sleep at night)

3:30am: Mommy gets a tiny drop of sleep

5:30am: vitals and nursing, Mommy is woken up

6am: nurse promises Rynnie will be seen by Interventional Radiology at 9am (a full 24 hours after tube was dislodged)

9am: Radiology PA (Kristen, shout out to you and all the PAs who encouraged and helped get this far) places new tube

10:30am: still awaiting discharge, Rynnie still without morning meds. Mommy missing her other kiddos morning snuggles.

And now, more than 24 hours later.. maybe vacation can begin.

This is the Special Needs life.

This is hard. Long. Exhausting.

This requires a skill in me that I hate, and does NOT come naturally. Demanding that people (the ER nurses who let my baby wail for hours while they were chatting and laughing) care about my sweet, innocent precious baby and giver her the care she deserves.

People should be OVER policy. IR should be called immediately (anyone on call is more likely to come in at 5:30 and not 9:30 or beyond). I should have went straight to the hospital on landing. You live and learn. You cry, you advocate, you miss time with your kids.. you long for Heaven. You ask for peace and strength in the here and now.

^{Romans 8:19-23}

¹⁹ For the creation waits with eager longing for the revealing of the children of God, ²⁰ for the creation was subjected to futility, not of its own will, but by the will of the one who subjected it, in hope ²¹ that the creation itself will be set free from its enslavement to decay and will obtain the freedom of the glory of the children of God. ²² We know that the whole creation has been groaning together as it suffers together the pains of labor, ²³ and not only the creation, but we ourselves, who have the first fruits of the Spirit, groan inwardly while we wait for adoption, the redemption of our bodies.