rotten day

So Tate's Upper GI with small bowel follow-through was today. As far as I was concerned, this seemed like it would be the easiest test so far. Well, let me just say, I was so wrong. 


I look back at the beginning of all this junk with the random vomiting and terrible upset tummy issues for Tate, and it makes me sad for him. Just when he was getting used to his prosthetic eye, and I've said many times that he's happier than he's ever been since he had his eye removed, this mess starts. Sorry, I'm having a total pity party today, and it's probably a party you didn't want to be invited to. But yet, here you are. So anyway, we started with the CT scan... after being up vomiting since 4am that morning, then driving an hour to spend 4 hours at an appointment getting his prosthetic eye adjusted (in other words, getting poked and prodded), he had to come home just to head straight to the hospital and have an IV put in to have his CT scan done. He was tired, cranky, and didn't feel well, and it was the last thing he wanted to do, and he showed that by having a complete meltdown the minute he saw the IV needle. But we made it through. Then came the gastric emptying study... on that day, he woke up at 5am, vomited for 4 hours (dry heaving at the end since there was nothing left in his stomach), then was at the hospital for 5 hours for the study. The toughest part about that day was having to make him eat the radioactive eggs, and feeling bad for him cause he was, again, tired, cranky, and not feeling well. So when I didn't wake up til my alarm went off this morning, instead of waking up to Tate vomiting on my bed or in the hallway, I thought we were off to a good start. We got ready, headed to the hospital, but not before I put a request on my facebook page that my friends pray that I didn't have trouble getting him to drink the barium, because I knew how stubborn he could be. (He's my kid). 


We got to the hospital for our 915am appointment. We entertained ourselves with my Galaxy Tablet while we waited for an hour to be called back. The doctors were confirming with our Pediatric GI doctor that the plan would include the small bowel follow-through, because apparently, that takes a lot longer, and they don't usually do that unless there's a specific reason. So after it was confirmed that we needed the whole thing, they gave me the cup of barium and got Tate up on the table. They offered him a flavor, and he, of course, chose the chocolate over the strawberry. (He really is my kid). 


That's when the tough part started. He was hungry since he had been fasting since last night, so he was anxious to drink the "shake". As soon as he tasted it, he made a face and pulled away. I know how stubborn he can be (again, totally my kid), so I reminded him about our earlier conversation that he would have to drink the stuff so they could do his test, then I would buy him a cool prize. Bribery usually works really well for him (once again, definitely my kid). So he agreed to try again to drink it... he took a good sip, then the face came back. The doctor then told me he had to drink the whole cup... it's the typical styrofoam cup, I'm guessing 8 ounces or so. I knew then that it would never happen at this rate. So the doctor starts telling him that he has to drink it or they're going to have to put a tube down his throat to get the barium in his belly. I encouraged him to try to drink big sips to avoid this, held his nose for him, and away he went. He took a big drink, then proceeded to gag and vomit. I wiped his face, gave him a break for a minute and just talked to him, then had him try again. Big drink, gag, vomit. This happened 4 times in a row before the doctor talked to Tate about putting a tube in, explaining that then he wouldn't have to drink anymore. He agreed, then the doctor talked me off the ledge explained it to me. I wasn't excited about this, but she assured me that they did tubes often and he would be fine. She asked me a couple of times if I was comfortable with it, and I told her I trusted her instincts. 


So before they can do the tube, she gets a lidocaine gel and puts it in a syringe, shoots some in his nose, and has him sniff to numb his nose and passageways. He wasn't a big fan of this, and the doctor said it does sting quite a bit, but he did great. That's when she tried to start the tube. I say tried, because as soon as he realized what she was doing, he started struggling. I held his arms and spoke to him softly, attempting to calm him, bribe him more, whatever it took. He was screaming that it hurt and burned. I noticed that the tube didn't seem like it had gone very far in... that's when she said the tube got caught up and "hadn't made the turn" and that it was probably pretty painful. They finally pulled that one out, and I felt terrible when I saw blood on it. It didn't really surprise me, considering where it had been, and that it got stuck, but it made me so sad for him. At this point, he was crying and screaming that he just wanted to be done and go home. So did I. 


Then came the new tube. It looked like it was the same size, but what do I know? I was talking to Tate, and the doctors were trying to take a look at his insides with the big machine to see if they could see anything from what he had swallowed by mouth. It wasn't near enough, and during this time, I had gotten Tate to calm down quite a bit. He was still crying, but much quieter at this point. He had actually folded his hands behind his head. The doctor motioned for me to hold his hands where they were so she could try again with the tube. So I held his hands, then he saw the tube coming toward his face. At this point, he started screaming and crying again. He began to roll his head back and forth as fast and fiercely as he could to try to avoid the tube. I had to hold his hands with one hand and try to pin his head still with my other hand and arm. He looked so distraught. It was awful. I finally got his head still enough that she was able to get the tube started, and thankfully, this one went right down. They taped it to his face, and began to pump the barium through with a syringe. That's when I pretty much lost it. He was crying the whole time they were pumping in the barium... he just kept saying "Please take it out, please take it out!" It really broke my heart. I started crying with him (but I was kind enough to leave out the screaming). I pretty much cried with him til they were done. I usually hold it together pretty well for his tests, procedures... heck, I even did better than that for his eye removal surgery. But for all of you who have kids who have had health issues, you know how emotionally draining (and emotionally devastating) it can be to see them suffering. I just hope that today was the last test for a long time. It just sucks. 


Overall, our appointment that I was originally told would be 45 minutes turned into almost 4 hours. (After all, it took an hour just to be called in). As far as the test results, the only new news is that he also has reflux. Reflux is rotten enough, but apparently when the gastroparesis set in, it made the reflux a lot worse. She gave me some tips to help relieve the discomfort from the reflux, and I expect they'll put him back on the Nexium and maybe try the erythromycin again to see if the rash comes back. 


Tate ended up with a green Nano bug (his original prize request) and a Jack Russell Webkinz (the extra prize I offered him because I felt guilty). He's back to being himself, and this morning already feels like more of a memory than one of the toughest days we've had yet. 


So after my sob story pity party post, if you want to laugh, check out Patrice's newest post. The boys think they're famous now. :) 

busted

So last night, Todd and I had a much-anticipated, kid-free free evening with our Sunday school class from our church. It was SO much fun. I enjoy our Sunday school classes (partly due to having the best teacher ever), but we have such a fun group that we really enjoy doing things with them all outside of church also. I seriously wish we could do outings like that every weekend. Well, maybe minus the "getting our group activity shut down by the cops" part.... 


Ok, it wasn't really the cops, more like mall security. But we sound much cooler if you're not picturing us getting lectured by a little guy in a hat bigger than he is. So our evening began when we all met at the church and headed to dinner. We had a great time... I haven't laughed that much in a long time! My face literally hurt for most of the evening. After dinner, our fearless leaders told us the plan for the group activity. We were to meet at the mall, split into groups, and have a good old-fashioned scavenger hunt! 


So we headed to the mall, and gathered our nearly 20 people in a group right in front of a few cops. There were some jokes about one of us getting busted for a traffic violation. (Not that one of us committed a traffic violation, of course. Especially not on the way from the restaurant to the mall during our Sunday school class outing. Nope, that would never happen.) So we divided into teams, handed out the checklists, and my team left the other teams in the dust. We sent the guys on our team after an employment application and a disposable toilet seat cover, while we girls headed straight to a favorite store to see if we could score a shopping bag, one of the many items on our list. Well, we hit the jackpot. The manager asked what other items we needed... and she apparently really wanted us to win. After impatiently waiting for our team leader, Mitzi, to read random items off the list, she asked, "Got a minute?" and when we said yes, she took the list from Mitzi, and headed into the stockroom. We scored something in the neighborhood of 15 items from that super awesome lady, and we knew we had the win in the bag. I was disappointed to hear there's no trophy for the winners, but bragging rights go a long way in our class! 


As we waited for our favorite mall employee to gather a few more items from our list, Todd came in and said everyone was waiting outside for us... I told him we were kicking butt in the game, and they can keep waiting. That's when he said those words.... "We've been stopped by mall security. Scavenger hunts aren't allowed in the mall without permission." What??? So I responded the only way I could. "Whatever, they didn't say that. We'll be out in a couple minutes." He told me he was serious, and repeated that everyone was waiting in the hallway for us. "Yeah, right. I don't believe that. Scavenger hunts not allowed without permission? Ha! You're funny. Now go tell them we'll be out in a few minutes. We're busy winning!" Todd reiterated that he was dead serious. Scavenger hunts are not allowed in the mall. I recalled having scavenger hunts in the mall with my church youth group when I lived in California. They were so much fun! Party poopers. 


So we headed back to the group claiming our win as we approached them. We learned that one of the teams were stopped in their tracks before they ever made it out of the gate. We then decided to send our fearless leaders to the information desk to see if they could get said permission to continue our scavenger hunt. When they approached the desk and explained the situation, the information lady asked, "So, how many kids do you have with you?" Ha! But even as a group of mature (ok, so that's debatable) adults, the information lady didn't have the necessary authority to grant us permission to continue. Bummer. We were happy to have the win, and headed back to the church for ice cream social part of the evening. We enjoyed socializing, joking, and getting to know the group better. I really can't wait for the next event! 

drew carey, anyone?

Pardon the wonky eye, it was in upside down! And pardon the weird haze... it's so humid outside that my lens fogged up!!! The first two photos show the pair that Tate picked out... his new nickname is Drew Carey :) 

Ok, fixed the eye for this one. :) 

This is the pair that Mommy picked out... we went with one plastic frame and one metal frame. Handsome in both! 

Had to get that sweet smile. :) 

random

I'll start with an update on Tate's condition... he is off all 4 meds for now... not because he doesn't need them, but because he broke out in a rash all over his face and limbs on Sunday after church. I called the pediatrician's weekend clinic to see if they just wanted me to discontinue Tate's newest medicine, the erythromycin, assuming it was an allergic reaction. They asked me to go ahead and come in, they wanted to make sure Tate was in fact having an allergic reaction and not something different. Because his rash wasn't raised like hives/welts, and it wasn't itchy, the pediatrician didn't think it was an allergic reaction to his medication. He actually thought it was Fifth Disease, since they have seen some of that lately. The rash wasn't on his cheeks at that time, and that's usually one of the prominent places to see it, so he wasn't positive that's what it was either. So his instructions were to discontinue the erythromycin just in case, until we could talk to the pediatric GI doctor. Tate's rash was supposed to last 1 to 3 weeks if it was Fifth, but it's all but gone already. I'm supposed to call the GI nurse back when it's completely gone... we may give him another dose of erythromycin and see if the rash comes back. Seems like it's been one thing after another lately! We go in for an upper GI barium swallow on Tuesday morning... hopefully it'll be the last test for a while. The GI nurse told us to discontinue all meds for now. 


So yesterday, I took Tate to look for new glasses. His surgeon requested that we get a sturdier frame, and his pediatric opthamologist gave him a prescription for his left lens.... it's a minus lens (-3.00) that will make his left eye appear the same size as his right. The size is a lot closer since we got his eye adjusted, but it's still a little bigger, and if Mr Boyd takes off anymore, Tate's eyelid may start to droop. His right eye is still doing well and doesn't need a prescription.    


We've had some pretty warm weather around here lately, so the boys and I have been staying inside. So we're leaving yesterday to go get Tate's glasses, and as we step outside for the first time, Tate says "What is this? A desert?" We're super thankful for air conditioning these days, that's for sure. 


After a mere 2 and a half hours and a few potty breaks, we finally decided on 2 pairs of glasses for Tate... I picked one and he picked one. That's about the best compromise I seem to get with my stubborn sweet 5-year-old. I'll post some photos soon. We pick them up tonight!


Noah started a summer hip hop dance class at a local dance studio this week. He LOVED it. I've been telling him for a while now that I wanted him to take one to see if he liked it. He's always dancing around, making up moves, making up songs... I thought this would be a perfect fit for him. It's also cool to see him doing something that's just for him. It's not like church activities, camp, or soccer that all our boys do... it's something only for Noah. It's amazing to see how different the three boys are. And he's already told me that he wants to sign up for the class that runs through the school year, and I can't wait to see what he does with it. 

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. 

updating...

It's been crazy as ever around here (um, weren't things supposed to calm down after I quit my full-time job???) so I will try to catch you up once again! We saw Dr G, a pediatric GI doctor at Brenner's Children's Hospital (part of Baptist). He asked a lot of questions (some of them twice) about Tate's tummy issues. He has tentatively diagnosed Tate with Cyclic Vomiting Syndrome. That basically means that he'll randomly and frequently throw up until he's a teenager, at which time he'll grow out of CVS and it will become migraines. There is family history of migraines (I've had them pretty severely since I was a teenager), and it's all related. I'll tell you what I don't like about the CVS diagnosis... there's no way to know for sure that's what it is. It's basically a "Well, we've ruled everything else out, so it must be Cyclic Vomiting Syndrome" sort of diagnosis. I am not a fan. Isn't there a test they can run to confirm? Nope. So he gave us some meds (3 to be exact.... one for nausea, one for acid, and one to directly treat the CVS), and he said this (meaning the med for the CVS) will fix it if it's CVS. I am the type of girl who won't take Tylenol unless I feel like I'm gonna die, so I'm not super happy about my 5 year old being on 3 meds indefinitely. But we figured we'd try it and see if it even worked before we make any big decisions. They also sent Tate for yet more bloodwork... I'm afraid he's going to start having track marks at the rate he's going. Good times. 


Did I mention that the appointment with the Ped GI was on the last day of my insurance with US Airways? Boy, did I find a great time to quit my job or what? I wouldn't be surprised if the folks at the pharmacy are still confused. We went ahead and filled 2 of the 3 prescriptions that day, but the insurance was giving us a hard time about the Nexium. I hear it's expensive. So I was like, "No worries, our insurance changes tomorrow, so we'll have to start over anyway." We were able to finally able to get the Nexium filled, and even the co-pay was high... we're thankful for insurance! 


Dr G set Tate up for a gastric study to make sure that what he has isn't "lazy stomach" (that's obviously not the technical term, however, it is the one that I can remember). I'm about to get detailed, so if you have a weak stomach, I suggest you skip to the next paragraph. Apparently, it's not normal that he's vomiting undigested food (aka chunks) several hours (like 8 or more) after eating. He said that the food should be digested at that point (within 4 hours of eating it), and that we shouldn't be able to recognize what his last meal was. (Ahem. I warned you). So that's what the study is for.... to give him food with dye in it, then track it for 4 hours to make sure it's going where it's supposed to go. 


Tate started taking the meds and hadn't thrown up in 2 1/2 weeks. Until today. Incidentally, today was also the day of his gastric study. We woke up to him getting sick in the hallway (blech!) at 5am, and he kept it up periodically until our drive to the hospital at 9am. I'm glad I had thought to bring a towel in the car. Although at that point, he was pretty much just dry-heaving. It's so heartbreaking to be watching your little boy in the rearview mirror as he dry-heaves, and his face turns so red because he can't get a breath. I nearly pulled over on the side of the road, but by the time I had a chance, the tough part had passed. We got to the hospital at 930am, and they let us know that they would feed him a scrambled egg with radioactive stuff in it (again, not a fan), then they would take pictures of his tummy after he ate, then after 30 minutes, then an hour, then every hour after that until 210pm. I began texting and requesting on facebook that everyone would pray that he would keep the radioactive eggs down, because if he threw up again, the study would be over and we'd have to reschedule. He was tired, cranky, and not feeling well, but we made it through the whole thing (a little bribery goes a long way) and he did great overall. We'll get results hopefully by Friday. I'm anxious to hear it, as I'm a little skeptical to the CVS diagnosis, not only because they can't absolutely confirm it, but because the meds may not be working as well as we thought. Please pray that we get definitive answers. I really want my boy to feel good. He's been through enough already. 

As always, thank you for all the prayers! We really love you guys.