This week feels like the week that will never end. On Monday, the FIRST day back at home, daddy had the gall to take me over to the hospital to get blood drawn. I mean, REALLY? Can't a guy get one day of rest? I guess my GI doctor needed to see the results before my appointment with him so we had to do it first thing in the week. They just poked my heel luckily so I guess it could have been worse.
On Tuesday mommy and I had to go see my neurologist in the afternoon and I was hoping to get off this darn seizure medicine.... however, my doctor had other plans. The results from that crazy eight hour EEG mommy and I did way back in September came back saying I had "abnormalities." No seizure activity, thankfully, but I had some weird spikes and "slowing," probably because of my brain bleed, she said. Unfortunately I'll probably always have those abnormalities since I did have a brain bleed, so no one knows if or when I'll be able to get off the medicine.... just to be on the safe side they're keeping me on it to prevent me from having any seizures (good idea) :( The doctor did say I was doing pretty good otherwise though.... she thinks my left ankle is a little stiff?? Mommy isn't so sure she agrees... and I'm a little weak in my upper trunk area (hey I'm working on it, a guy can only concentrate on so many exercises and therapies at once), but overall she said she would never have known by looking at me that I have a grade three and four brain bleed. I'll take that as a big compliment! :)
Now I know they say Wednesday is hump day, but this week it felt like more of a mountain than a hump. I started the day off on a bad foot with mommy by peeing all over her and my bed as soon as she opened my diaper up (I couldn't help it). Then mommy and I had to go to the pulmonologist to get my nasty RSV shot. I wasn't feeling so hot in the car and decided to just get it all out of my system.... literally. When mommy went to get me out of the car I was soaked up my back, through my clothes and all OVER my car seat. The nurses gave us a room right away (haha) and mommy went to work changing my stinkiness.... the funny thing was, once she got me naked the nurse suggested they go ahead and weigh me, but it was cold in that room and it made me have to pee again.... so I did. All over the scale and right onto the floor. Needless to say, that room was no longer suitable to conduct an examination in, so across the hall we went.
Unfortunately my tummy still wasn't feeling right so even though mommy had JUST changed and clothed me, I dirtied myself up again... except this time mommy was all out of wipes (yes my first mess was THAT bad!). Back to the drawing board mommy went, changing and reclothing me once again. After the doctor we had to go over to pick up a prescription from my GI doctor for an ultrasound on my liver and galbladder. My blood work showed my bilirubin numbers are a little high so.... again, where I thought I would be coming off my liver medicine, it seems my doctor has other plans. Now I have to get up SUPER early tomorrow morning, and not eat for four straight hours, to get this ultrasound and make sure everything is working ok.
Back to my dramatic Wednesday, though.... mommy and I, after seeing the GI doctor, went down to get my prescriptions and wouldn't you know, my tummy started rumbling again. At this point I had pooped five times in just a couple of hours and mommy knew something must be off. Once we got home I hung out with my nurse and things settled down a little but before mommy got back home from work I had pooped two more times :( At this point mommy took me OFF her milk and put me on a strict pedialite diet. THANKFULLY I don't have to drink that stuff, yuck! I was a little cranky and agitated last night but once I finally settled down I passed out :)
Today started a little bit better than yesterday... I had speech therapy in the morning then I hung out with my other nurse and had a pretty relaxing day. Mommy talked to my pediatrician a couple of times today and she started me on some rice water with my pedialite and mommy just started putting a tiny bit of milk back into my pump for me. The bad thing about having a G-tube is I can't tell mommy and daddy that I don't feel good or hungry and I can't drink as much or as little water/juice as I want. This makes it pretty hard for them to figure out what to feed me and how much... even the pediatrician wasn't so sure! The good thing, however, is I CAN stay hydrated and get my food without having to do any work or fight with mommy and daddy to get it down. Hopefully I'll start feeling more like myself by morning and back to good again soon! The good thing is I haven't had any fever or really even felt sick, just can't keep anything in my tummy for long.
Friday looks to be my best day of the week.... my daddy is coming back from Ohio, HOORAY, and I get to hang out with my favorite Auntie Emma for most of the day!!!! I did get to see some of my favorite NICU nurses and RTs for a few minutes on Wednesday (which was the highlight of that day) and I gave them lots of hugs and smiles :) I'm glad the weekend is just around the corner... I'm looking forward to a relaxing, quiet few days with my favorite two people!!
On one final note, please say a little prayer for my friend baby Gianna. She passed away on Monday morning... she was born in July at 25 weeks and her twin sister Zoey stayed in her mommy until 26 weeks. Zoey got to go home last month, but baby Gianna lungs just weren't strong enough and even though she was at the BEST hospital for babies they couldn't help her :( We are very sad for her and her family but we know Gianna is in a good place now!! Her and Jackson will BOTH be watching over Zoey and me forever now!! Please pray for her sister and mommy and daddy :)