Wednesday
It’squite a change, moving from the ICU to the step down unit. On one hand, it’s SO much quieter and less chaotic. On the other hand, we miss the one-on-one security of having a nurse available just for us and having that nurse know everything about Nathan.
Case in point. At 2:30 a.m. our nurse waltzed in, flipped on the lights, began loudly asking Nathan for his name and date of birth, tried to poke his finger before he woke up enough to stop her, and then saw me in the corner on the cot.
Oh hi.
She simmered down a little when she saw me, but hey “since he’s up” why don’t I do a full set of vitals while I’m here!?
This has not happened in any of the nights Brian has been here so I just wasn’t expecting it! Seriously, how rude.
Our nurse TODAY is wonderful (Courtney) and helped get Nathan to his procedure this morning. She even tidied up his room and made his bed while we were gone. I mentioned last night’s fiasco to her and she said every nurse has come in to do a blood sugar check, but Nathan’s on sleep enhancement (not to be disturbed between 10 p.m. and 6 a.m.) so no one wakes him up. She said she’d mention it to tonight’s nurse.
Nathan was the first procedure up today. Yay! They came and got him at 7:00 a.m., bright and early. After a quick round of meds and some vitals, he was able to walk to the transport bed out in the hall. That was cool to see him up and about. We got down to the patient area around 7:30 a.m. for the 8:00 a.m. procedure. That was new. Usually, they just take him right to the procedure room. But alas, since we aren’t special ICU patients anymore, we have to wait nearby until they’re ready for us. A small price to pay!
Around 8:15, one of the nurses stopped by and said, “Oh hey, we’re going to drain Nathan’s stomach first so we get a better cath reading. But the team that does that isn’t available until 9:30 a.m. so we’ll have to have you wait.”
*sigh* If there’s one thing Nathan has gotten really good at is waiting and the look he gave me was priceless.
So me, still in pajamas and no makeup since I thought I’d be coming right back to Nathan’s regular room after dropping him off, hung out in the patient area, distracting him for an hour so he wouldn’t be anxious or worried. Then he finally got to go to the procedure room and I left him in good hands.
A nurse told me later they took another 1.5 liters off of his stomach, so hopefully that will make him much more comfortable.
While I was waiting for Nathan back in his regular room, I was able to get ready for the day and do a little work. Then, the endocrinologist doctor stopped by and she is quite a talker. They’re going to give Nathan more insulin as they started pretty light to make sure he was okay. She also said he has to wait two hours between a snack and a meal for accurate blood sugar checks. If you have been following Nathan, you know this is not going to be easy. Food is the one thing that brings this kid joy…he likes snacks and grazing! Finally she said we have to move to finger pokes because that’s more accurate than the picc line, and even after he gets the DexCom, he’ll still need finger pokes to calibrate it. She was a big ol’ ray of sunshine.
Mom vent: It’s like, we’ve asked Nathan to do SO FREAKING MUCH. The weight he’s carrying around (literally and figuratively) is more than anyone could expect him to do, let alone as a teenager. I don’t think I could do what he’s doing right now. At what point is it too much? I know everyone is fighting to make him better, HE’S fighting, but it absolutely crushes me as a mom to see a new hurdle being thrown his way almost every day. Mom vent over.
The rest of the day we chilled out, counted carbs, and took insulin like a champ. We found out his heart pressure numbers had decreased a little bit which is great news. Looks like time is the magical healer!
Thank you for all the prayers, gifts, and many blessings you are pouring on to our family. We are grateful to all of you.
Thank you!!! M, B, E, N
To learn about upcoming fundraising events and/or to donate to COTA to assist with transplant-related expenses, visit https://cota.org/campaigns/COTAforBraveheartNathan