Monday, May 10th, 2021

Day 10 - Round One, DONE

But the battle has only just begun...

Declan had quite the afternoon yesterday, while he enjoyed his Mother's Day with his momma, he decided it would be a great time to pull out his NG tube, one final time. The challenging part was, now it was daddy's turn to thread the needle. 

Part of our NG tube training at Children's Hospital, was to have either Jennifer or myself place Declan's tube. This late night escapade at least gave us a good reason to give it a go.

While Jennifer played defense, I was at the helm. 

There is nothing natural about sticking a tube so long into your child's nose that it reaches their stomach. Resistance was felt. I panicked! Pulled the tube out to notice blood at the tip... more panicking ensued. But eventually, I got the tube down Declan's throat... at least we think...

You see, when you place an NG tube, the hospital taught us that we need to pull stomach contents out and test it on a PH strip. As long as we got a PH of 5 or less, we were pretty sure we were in the stomach. 

We were ready for this test, so we tried to draw from the NG tube... aaaand.... nothing... 

I may need to preface this story with another brief one...

While in the hospital, we were given a high chair and some baby food puree for Declan (he LOVES watching us eat, and was always very interested in food, so we've been introducing him to some prior to this hospital visit). One of these foods was banana puree, YUM. Declan couldn't get enough of them.

Anyways... after his banana bath (as I swear more got ON him than IN him), he removed his NG tube, and it was up to us to replace it... 

Have you ever tried to suck up pureed banana through a very thin straw? Because that's what were were attempting to do. 

So while it was frightening to not draw ANY stomach contents for a while, when we finally did draw some... we were 100% certain it was in his stomach. The PH strip confirmed it, but what we drew out of his NG tube... was... banana puree... and unless his meal took a nasty turn somewhere, we were very certain we didn't miss the mark on his tube placement.

Declan started his 3rd day of chemotherapy today and we were getting ready to be discharged from the hospital. 

FINALLY!

After all this time spent sleeping on uncomfortable beds, in an overly warm room, we could go home and get Declan back to a place that he actually likes to stay.

The process of leaving the hospital with a cancer patient is no small feat. While we were met with countless doctors, pharmacists, and nurses, part of our discharge involved copious amounts of calendars and dosing regimens. 

How to properly fortify his milk so he'll continue to gain weight (per the nutritionist).

How to protect Declan and ourselves from the perils of chemotherapy (per the nurses and oncologists).

How to dose and administer shots for Declan's time at home (per the pharmacis... WHAT?

What do you mean shots? I need to poke my son when we get home?! Oh... not once... BUT EVERY DAY! FOR AT LEAST A WEEK!!!

This was a memo that didn't reach us until our care team did rounds the day of our discharge. 

Part of Declan's treatment is to receive a dose of medicine to help boost his production of cells for his immune system. Usually, this dose is administered ONCE, by a nurse or physician 24 to 72 hours after the last dose of chemotherapy. 

However, because Declan is the most special boy in the whole wide world and we love him so much... he is too tiny to receive this single dose of G-CSF. So instead, he gets several - tiny doses - over the course of a week (or longer until his ANC starts to rise).

No problem though, the nursing staff inserted a catheter into Declan's leg so it would be a bit easier than stabbing his precious skin every time we needed to dose him. 

Soon after that, Declan had his port de-accessed for travel back to home, and had one less thing protruding from his body. 

We arrived back at the house, drained, tired, and overwhelmed with the amount of information and medical supplies to unpack. At least there was one silver-lining to this day, we were finally home.

PS: Declan was wiped out from the entire experience, and started to sleep like a bear -