Apparently I'm writing a novel, so here's chapter 3... Three seems to be a very common number in patterns and other predictable things. Three's company, 3rd time's the charm, bad things come in 3's. To be honest, after Griffin's second surgery I was sure there had to be a #3 bad thing, but also sure it wasn't going to be him again! I have felt uneasy about Griffin's health since the 2nd hospital stay, but was just starting to move past that a couple of weeks ago as his incision finally closed up and he was looking really healthy. Two weeks ago tonight, we were getting everyone ready for bed and Griffin started complaining that his tummy hurt. I got him dressed and was a little nervous, but sure it was nothing because it would make no sense to have another issue this long after the last time. I watched him get up after saying prayers as he whispered "ohhh" in an agonizing but trying to be tough kind of way. Then I watched him walk to his bed like a little old man walking with a cane- bent over to one side and kind of limping. I looked at Adam with that look of "are you thinking what I'm thinking?" and he just shook his head and gave me a half smile. We both knew what was coming even though we didn't want to admit that's what we were thinking. That night he woke up crying and had a temperature of just 100. I wondered if maybe he was just really hot from being bundled in his blankets, but still gave him some Ibuprophen just in case. The next morning his fever was gone, but he was in pain. I had talked with a friend the night before and asked if she could watch my kids if I needed to take him in again and she of course said sure, but also reminded me that surgery scars can hurt long after surgery and maybe it's just a little irritated. I needed that to help me sleep because I was a little paranoid before! So, knowing I had a babysitter on call, I called the surgeon's office the minute they opened at 8:00 and talked to the nurse. The Dr. was out of town for a week, but she said it sounded like he was probably fine, but to call back if his fever spikes. She also suggested maybe calling our pediatrician if I became concerned. I thought about it for a minute and decided to call the pediatrician's office. Griff had a well child appointment scheduled for the next day anyway, so the nurse suggested just bringing him in to be checked in case and maybe they could get the well child check in if he was otherwise fine. Our pediatrician is an hour south of us because we just love her so much we haven't been able to find anyone local to replace her. It usually works out ok because when we need to go to her office, I can have my mom or Adam's watch the other kids since they live close. They got us scheduled in for 10:30, and I figured worst case scenario, we'd need to stay the night for whatever treatments needed, best case, we'd stay the night so he could have his well child check the next day. So, I hurried super fast and packed one night's worth of stuff for everyone, including Adam, and headed to Ogden. I called my Mother-in-law on the way and asked if she'd meet me and pick up the other boys. We got there right at 10:30 and by then Griffin was hurting pretty bad. He wouldn't let anyone near his belly, and based on his symptoms and history, the Dr. suggested getting a CAT scan done to look for infection. This being the 3rd time around, she suggested we skip the local hospital and go straight to Primary Children's Hospital in Salt Lake to get any testing needed and take care of whatever the problem may be. Adam was unreachable and I needed moral support if Griffin was going to be getting poked and prodded more, so I asked my mom to come with me. I picked her up, dropped a couple things off for the other boys and headed off to the hospital. Luckily, I got a hold of Adam just in time for him to get there at about the same time as I did. We went into the ER and got check in right away and by then Griffin's fever was up to 102 and he was pretty miserable again. We spent the next 11 hours in the ER running tests and waiting, waiting, waiting.
Every medical person to come in our room suggested that this had to be some other thing causing his problems since he's felt good for 4-5 weeks. They checked for a bladder infection, they checked for a regular virus, they check all kinds of things and then decided to do a CAT scan. It was miserable trying to get him to be still for the CT. I told them they'd need to sedate him, but they really wanted to try "other calming techniques" first. It took an hour and a ton of different medications pumped through his IV to finally calm him down enough to be distractible.
At PCMC they have "Child Life Specialists" that come and visit with the patients and explain what is happening and play a little bit to help comfort them. One of the specialists brought in an iPad with games to keep him busy. They'd work for a minute, then he'd remember he was strapped up in the air to a moving machine and freak out. We finally found one that he liked called "Talking Tom". It's a cat that repeats what you say in a funny voice and you can punch him and knock him over. G thought it was hilarious to punch him, so about 4 of us stood around the machine cheering "get him! punch him! Harder!" to keep him occupied. After the CT scan the surgeon came in and showed us the image of his belly. There was a huge pocket of infection right behind his incision that apparently had been "brewing" in there for over a month! From the reports he read, the surgeon concluded that his appendix actually HAD ruptured initially and was never fully taken care of.
We were given 3 treatment options, which the surgeon considered to all be pretty good options. 1. Treat with just antibiotics for as long as needed- possibly a few months. 2. have a radiologist stick a needle in and "suck" the infection out, which could possibly result in needing surgery to finish cleaning it out. 3. Open the incision back up and clean it out and place a couple of drains in there to help it keep draining for a while. To me, the one that sounded most likely to work the best was surgery, and we wanted this to be our last hospital visit for this, so whatever's going to work best is what we wanted! They decided to wait until morning to decide what to do, so they admitted us to the surgical unit. In the morning we told them that we wanted to do the surgery, so off he went, again, to surgery. My brother had mentioned stopping in for a visit since he worked right by us, so I asked if he'd come and help Adam give Griffin a blessing before the surgery. He got there just in time and I was so grateful for the Priesthood at that moment. The surgeon said he was originally leaning to option #2, but that he really felt like surgery was the answer. It never gets easier sending your baby off to an unknown place with strangers. Before the surgery, the anesthesiologist was telling us the risks and how they have such a low occurrence rate and I just rolled my eyes because so far just about everything we've been through with this has had a low occurrence rate! I told him thanks for the comforting words, but I was still skeptical. It was a long long long hour waiting, but the surgeon came out and showed us pictures of the incision and said it went really well. We were supposed to stay that night and head home on Saturday. They placed a PICC line (internal IV basically that goes up his arm and ends right next to his heart) while he was in surgery so that he can have IV antibiotics at home and any blood draws would come from there as well. On Saturday, we were told that they needed to keep up another day while they run a test on the bacteria to find out if it was the same bacteria and which antibiotics were best. So we stayed another day.
Saturday night they were filming their annual telethon, so they had a big party for everyone at the hospital. Griffin was doing much better and had been up running the halls and talking everyone's ears off, so they came and asked if he'd talk on the TV about being at the hospital. Being that I had only packed 1 day's worth of things for Adam and I and we were kind of grungy looking, we weren't exactly in the mood to be on TV, so we said no thanks! The party was fun, there was tons of food, people dressed as SpongeBob, a mermaid and pirates, there was a fishing game, crafts and face painting. While Griffin was decorating a "wish fish" to put on the wishing wall, they asked if he'd put it on the wall while they did a live shot of the hosts in front of him. It was fun for Deegan to get to see him on TV. Griff got to eat all the treats he wanted- cupcakes, candy, soda! He was in heaven for a little bit! Sunday morning the nurses told us that the bacteria needed another 24 hours to finish the test, so we had to wait until Monday to go home. We were SO ready to go home by Monday! Monday morning they told us that they had set the bacteria up with the "normal set up" of antibiotics to test and they didn't get the results they'd expected so they were going to do it again with a customized set up. Luckily, they sent us home and were going to maybe change his antibiotics after a couple days. They set up a home health nurse to come to our house and show us how to administer his IV meds and help with dressing changes, etc. We've been home a week and 2 days and are starting to adjust. He gets his antibiotics 3 times a day for an hour through a little "water balloon" type thing (and one 5 minute one through a syringe). It's kind of weird playing "nurse", but it's going well. We're still not sure when this will all end, but hoping for sooner rather than later, and really hoping this is the end of the complications- although my optimism is a little damaged this time around. Whatever, as they say, "what doesn't kill you makes you stronger". I think Griffin will be a tough kid growing up!
Being silly, killing time while he was hooked up for antibiotics
Walking the halls- too anxious to wait for mom and dad!
I think they hand picked this room just for Griffin to be able to watch tower cranes and construction workers all day!
Ready to go HOME!!
We've been watching WAY more movies than we should be, but when he has to sit with tubes hanging out his arm at 1 in the afternoon, what better way to do it than in front of the TV? Plus, he has a dose at 9 pm and 5 am which means not a lot of sleep for me, so I need a little down time in the middle of the day!
"Take a picture of my band aid mom"
Chillin'
