A huge change...

I know it's been forever since I last blogged, but this year has already been so crazy. It all started this past fall when it seemed like Zion just would've eat anything. I would make him what he asked for and he wouldn't eat. We'd offer to go out for dinner and he wouldn't be hungry. So when we went to Cincinnati the beginning of Oct the dietician said that if he didn't improve within 2 weeks to call her and we'd discuss our options. I asked what those options were and she said pretty much just a g-tube. I think my heart might've stopped for a split second. I knew he would need this someday, but it just seemed like this was all happening too fast. Way faster than we thought it would. Within a few weeks he seemed to get a little better. For about a week and then he went downhill again. He got sick over Christmas and he lost 2lbs in less than a week. We knew we needed to do something. Trying to get him to eat just wasn't doing enough anymore. I called Cincinnati.....and called Cincinnati.....and called!! No one would return my phone calls. Very frustrating. I FINALLY got ahold of a nurse that could get me the nurse of the dr I needed to talk to. Voicemail....left a message....2 days later and still no call. I was getting really mad now. Zion was to the point where he wasn't functioning. And when I say that I am not exaggerating at all. He could no longer crawl and wasn't even able to sit up unassisted anymore. I left voicemail after voicemail on anyone I could think of's phone and finally a nurse called me back. She said she will email the dr and get back to me. Omg...She actually got back to me the same day and said she wants us to get there asap so we can assess him and then we'll come back home, 3 1/2 hrs back, and then talk about what we need to do. Uh...no. We aren't doing that. We wanted something done now before he loses more abilities. They obviously weren't doing what needed to be done so I got ahold of our pediatrician and asked her if she could get us into Riley Children's Hospital, only 1 hr away. She called me within minutes and said the dr said to take him to the ER and be prepared to be there til at least Tuesday (this was a Friday). We packed our bags and said bye to Zoe :( My grandma is amazing and always keeps her when we have hospital stays/drs appts. We got to Riley's ER and we're there for a few hours before they told us we were ready to go to a room. Loooooong story short (kind of..haha) they admitted him for chronic respiratory failure and failure to thrive. They immediately put him on fluids and started getting surgery involved because g-tube was definitely getting put in this stay. Saturday they told us that the surgery was scheduled for Monday morning at 7:30am. I knew this was going to happen this stay, but once I heard surgery was scheduled my heart sank. I didn't want to go through this....I didn't want my baby to go through this! What other choice did we have?? None. It was this or he would continue to go downhill. So of course, we agreed. The surgery went smooth and quick. Way quicker than I thought it would be. The recovery was another thing. It hurt me so bad to see how much pain he was in. He couldn't sit up, he couldn't cough, just touching his stomach made him scream in pain. :'( 2 days after surgery Zion wouldn't go to the bathroom. Nothing. No pee, no poop. Great...something is not right. They put him back on fluids and more miralax and nothing was happening. Anyway! They did an ultrasound, another ultrasound, catheter, and finally he started to go, but was in a lot of pain. Then they did a urine sample and discovered that he had a urinary tract infection. :( Poor thing. They started medicating him for that along with other things, like his eye that just started breaking out into hives the day after we got there. So weird. We saw the eye dr for that and they couldn't figure out what was wrong. So anyway, we finally busted out of there on Friday! It seemed like we were there a whole lot longer than one week! BUT he is doing great. Other than a little pain still. He's tolerating the feeds and is even wanting to help during them. :) He's such a trooper and I'm such a proud mama! Even though I would rather none of this had to happen, I'm glad we did it because he seems to be getting back to himself. :)