the almost tantrum

I called and left a message for the nurse at our Ped GI's office on Friday, just before lunch. I hadn't heard the results yet from Tate's gastric emptying study from Wednesday, and I don't like waiting over weekends. Well, let's be honest here. I don't like waiting at all. I've been waiting for test results more often lately, with Tate's CT scan, then 2 rounds of bloodwork, and now his gastric study. I was always half-panicked, but half-relieved when I didn't hear something right away. After all, no news is good news, right? And I was getting used to the standard call from a nurse saying "Just wanted to call and let you know that all the test results were normal". So when Dr G's nurse called me back on Friday, I was expecting just that. I knew they had the information by Thursday, so I figured they would have called right away if there were a problem. So she said "Just wanted to call and let you know that Tate's gastric study results came back abnormal." Wait... what? Abnormal? She proceeded to tell me that's all she could tell me at the moment, until they heard further from the doctor. She didn't want me to have to wait over the weekend to hear about the results. She said the doctor would likely put him on a new medication. I asked her if we need to keep him on his current medications or discontinue immediately. She said keep him on them until we hear otherwise from the doctor. Then she told me that she'd hopefully call me back that day, but if not, she is on vacation on Monday and Tuesday, so I'd hear from her on Wednesday. I explained that I really hoped to hear from her that day, because I'm not so great at waiting. She promised me that she would ask the doctor to have one of the other nurses call me on Monday if we had to wait through the weekend. 


Tate had his checkup with his Pediatric Opthamologist just a couple of hours later at the hospital, and for a moment, I panicked that I might miss the call back from the nurse.... then I realized I'd be in the same hospital, and I was really interested in getting more information on Tate's condition right away. So I decided a little ambush might be in order. All I needed was a little encouragement from Todd and a couple of friends that it was a good plan, and soon enough I decided I would just go for it. All they could do was turn me away, right? So after a good checkup from the eye doctor, then ordering Tate a new pair of glasses (more on that later!), I decided to head up to the pediatric floor. I let the girl at the desk know that I had been waiting on a call back from the nurse, but found myself in the hospital most of the afternoon, so instead of taking a chance of missing her call by the time I got home, I thought I'd just stop by and see if she had a minute. I apologized for being a bit unorthodox, and thanked her. So the nurse came out to see me, and after a couple of minutes of chit chat, I asked her to explain what was going on with Tate. She said that his stomach isn't digesting food like it's supposed to. The muscles don't contract like they should. After a little researching at home, I learned this is called Gastroparesis (in layman's terms, it's "lazy stomach"). It's not an unusual condition, but there's no "fix" for it. It can vary in severity, from mild problems with upset stomach to a need for a feeding tube in more unusual cases. They started him on erythromycin, which is basically an old-timey antibiotic. (The pharmacy I use didn't have it, which I didn't know until I got there, and the pharmacist called about 15 pharmacies before finding it, which ended up being the pharmacy back at the hospital!). I've since read that erythromycin doesn't really help this condition. I'm hoping that's not the case for Tate. The nurse gave me some generic diet information to guide us, but after reading it, we realized it doesn't all apply to Tate (one of the steps was a completely liquid diet), so we don't really know which part we're supposed to do. Google and I have become BFFs lately, so from what we've read about Gastroparesis, we will be feeding Tate smaller, more frequent meals (what we all should be doing anyway!) and try to stick with things that are easier to digest. If anyone has any recommendations on a juicer (that won't break the bank), that's something we're considering as well to make sure we can still get veggies in. 


So it's been a stressful week, and I've been in the hospital with Tate 3 out of 4 days this week, so I was a bit down last night. I was feeling sorry for Tate, feeling sorry for myself, and wondering why the kid who just had to have his eye removed now has to deal with stomach issues that make him vomit all the time. I am very aware that it could be worse, and I definitely know that in the grand scheme of things, this just isn't a big deal, but at this point, I just felt like he's dealt with enough. And been a super brave kid the whole way through! I was on the verge of throwing a tantrum, a kicking, screaming "it-really-sucks-and-it's-not-fair!" type tantrum. But then today, I got something from a friend. I got perspective. My dear friend Patrice has a sweet little boy named Jonah. Jonah has EB. I've talked about them before, and her blog is linked on mine, so you may have read their story. She posted about Tripp, another little boy who has EB. Tripp's condition has been worsening over time, and his mom, Courtney, wrote a tear-jerking poem about Tripp. You can read it here, but have your tissues ready. (Consider yourself warned.) I realized when I read it (not that I've never realized before, but sometimes you just need a reminder, you know?) that God has given us so much when he gave us Tate. He has given us happiness, laughter, hope and a renewed faith in Him. Tate's journey has brought me closer to God than I've ever been. And it really could be so much worse. So just as we developed a "new normal" with Tate's PHPV, we'll develop a "new normal" with his Gastroparesis. He'll be ok. We'll be ok. And I'm thankful. 


Thank you for all of your prayers for Tate. Please be in prayer for Tripp and his sweet mom, Courtney.