Tube day kicked off on a Friday April 13th. We weren't scheduled until Saturday, but Friday brought the arrival of a month's worth of supplies. It was so overwhelming to see all of the things it will now take to keep my baby fed.
- 30 enteral feeding bags (one per day, to be washed between feedings)
- 4 pieces of Duoderm
- 4 pieces of Tegaderm
- 4 pouches of water-soluble lubricant
- 2 60ml Syringes
- 1 5ml syringe
- 2 rolls medical tape
- 1 roll pH paper
- 1 box no-sting barrier
- 1 Infinity pump
- 1 Pump backpack
- 2 NG Tubes
It was a long evening. We stressed and wondered how it would go. Would we be able to do it? Would we be overwhelmed? There was only one way to go - forward. Morning came, as mornings tend to do.
Megan arrived, and Katie arrived, and suddenly it was time to go. We piled into the car and headed down to CHOP. There was some "where is this building anyway?!" stress, followed by some "where is this room anyway!?" stress, but we made it. Katie and Aidan left safely in the family center to play, Tom and I headed into the training room with Megan (to whom I owe every single one of the following photos) and the instructor. There, we met our baby. I'll call her Tubella.
Tubella had a family with her - older brother Tubissimo, twin brother Tubello, and infant brother Tubito. The Brothers T were merely bystanders - we had all of our fun with Tubella.
After much discussion, many questions, and a fair number of "That's What She Said" jokes, we found ourselves ready to intubate Tubella. She was very good about it - such a doll, really.
Step 1: Apply Duoderm to the face in nose-to-ear direction:
This step includes trimming the duoderm to a workable size, applying no-sting barrier, and being as soothing as possible while lying through your teeth about how this is almost over.
Step 2: Check The Tube
Flush the tube with a syringe-full of water to check for leaks. Wiggle the stylet to ensure that it will be removed when needed after intubation.
Step 3: Measure and Mark the Tube
Measure from the tip of the nose to the earlobe, and from the earlobe down to the belly button. The "right" spot to mark is halfway between the belly button and the bottom of the ribcage. Measure twice, mark once (with a sharpie, all the way around the tube). You'll need an easy visual later on.
Step 4: Intubate
Lubricate the end of the tube and insert into the nostril. Feed the tubing down the esophagus until you reach the line you marked. It may help to offer Mr. Baby his wubbanub (Tubella was sadly uninterested) - older kids may prefer to drink water from a straw while being intubated.
Step 5: Secure the Tube, Make it Comfortable
Use Tegaderm (we use another piece of duoderm instead) to secure the tube to the face. Pull out the stylet, and check to confirm placement (withdraw a small amount of stomach contents. Check coloring and pH to be sure it's in the stomach!). If placement is good, tape that tube down and continue assuring your screaming patient that you love him dearly and you're ever-so-sorry.
That's really about all there is to it. Shockingly quickly, it was time to bring Aidan in for his tube placement. We decided that I'd be the one to perform it, so after a quick break, we got down to business.
First, we wrapped him tightly in blankets. He was not a happy boy.
The process itself is very quick - it was no time at all before I found myself actually doing it.
And then it was over. Done. Aidan looked suitably sad, and actually tore the tube out only moments after this picture was taken.
Once we got home, things calmed down quite a bit. Aidan snuggled up with Tom for a bit:
From there, it was only a few short hours before our silly monkey returned to us.
That's our story. We're proud of ourselves, proud of him, and ready for whatever comes next.
I am honored, as always, to have been a part of the process and to be available for "That's what she said" jokes. You and Tom were fantastic, Aidan is an incredibly little boy, and Katie and I make a pretty awesome entourage.
ReplyDeleteI'm mostly glad someone else knows how to do the feedin' (see what I did there?)
DeleteI love the last 2 pictures of him!!
ReplyDeleteThanks, me too. He's so dainty...
DeleteYou should be a nurse too.
ReplyDeleteoh gosh, definitely not my calling!
DeleteYou are so strong. I can't imagine how difficult this is but it sounds like a positive step for you guys!
ReplyDeleteIt definitely is!
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