What’s Going On?

Back in October Stephen and I took the kids to spend the weekend with grandma and grandpa while we went to Boise to spend some much needed alone time together. It was kind of meant to be a surprise for Stephen for his birthday because he had been working such long hours at work and it was going to be a last hurrah before his big trial started and he wouldn’t have any more time off.

Anyway, on the way to Twin Falls I had noticed that Hannah’s face was looking kind of fat as she slept in her car seat. I made mention of it to Stephen but thought it was just the angle and way her head was laying on her lap as she slept, so I didn’t give it much more attention. As we made it to Twin we unloaded our bags from the car and sat down to dinner. After dinner grandma asked me if I had noticed Hannah’s face and how swollen it looked. I hadn’t, so we checked it out and, holy cow, was it swollen on one side! So we immediately put her in the car and drove to an urgent care to see what was going on with her face. She was immediately admitted and taken back for some tests. They took two swabs to test for strep and mono and they also did a CBC to check her blood for any abnormalities. They thought maybe it was a swollen thyroid or lymph node, but didn’t know why it was swollen. We were then sent home with some antibiotics for her to start.

Stephen and I left for Boise the next morning to start our “vacation” we literally did nothing that whole weekend, and it was glorious! We did some early Christmas shopping, took naps, went to a boring movie, and bought a car. We also got a phone call that all Hannah’s tests came back negative, so we didn’t really know what to do from there. When we got home to Utah that weekend I took Hannah into her pediatrician to see what he had to say. He kinda said the same thing, that it looked like a swollen gland of some sort and to keep her on the antibiotics for another week. If it didn’t get any better then we’d have to take her in to an ENT. A week passed and nothing had really changed, so I took her to see an ENT who told me the same thing as the other two doctors with no new information. Keep her on antibiotics for another week and see if it changes. I kept her on the medication for another week and had noticed that from two weeks earlier it did look a little smaller, but not much, so I called the ENT who then ordered for  a CT scan to be done at primary children’s hospital down town.

Hannah had been on antibiotics for 3 weeks before her scan was done. I took her off of them for two and a half days and noticed that her jaw had swollen all the way back up to where it was before an beyond, so I couldn’t wait to get the CT scan done. The day finally came and we took our two year old to the hospital to get her scan done. It was horrible! As a pregnant mom it was so hard for me to have to hold her down kicking and screaming and crying for it to stop as the nurses tried to get her IV line in. It took them two tries to get it in after a 10 minute struggle. Then we headed to the scan room where I couldn’t stay due to being pregnant. So dad stayed in there with her and tried to get her lay down and hold still and calm her down. As we were getting ready to leave the radiologist quickly mentioned that it was looking like a cyst of some kind. So that kind of eased my mind a little bit because this whole time I’ve had tumor on my mind. The mass was huge and came out of nowhere and was hard, so it had all the classic signs and symptoms of it being a tumor.

I called the ENT a few hours later to see if he had any news. He then told me that it looked like she had something called an 'A typical  myco bacterium' infection in a couple of her lymph nodes, and that it was really rare because he had only seen three of these cases in his 10+ years of practice. We had never heard of that before so Stephen and I did a little research and found that this particular type of bacteria is related to tuberculosis and leprosy. It can be found in contaminated water or soil, so we were trying to think back and figure out where she could have possibly picked it up, but nothing really came to mind. We hadn't gone anywhere or done anything out of the ordinary, so it was hard to pinpoint a source. Anyway, the ENT then referred us to an infectious disease specialist who is supposedly the best ID doctor around.

After the news from the scan the next step was to see a new ENT at Primary's who would assess Hannah's condition and see if she would need surgery to remove the infected lymph nodes. So that's what we did at the end of that week. We met with Dr. Park who after explaining her condition and gave us our options made us feel a lot better about what was happening to Hannah. He told us that it actually isn't that rare to contract the bacteria. He told us he saw a few of these cases every month in young children around Hannah's age, and that he had performed the surgery between 70-100 times so he was very confident that things would go well. He also said that the bacteria is all over in the air as well as water and soil, and that her condition was benign--if left untreated it would eventually go away on it's own, but it wouldn't be pretty. The infection would get bigger and  make a dark red/purple spot or spots on the infected lymph nodes and seep through the skin for about 12 months before getting any better, and the spots could become permanent, so we felt that surgery was our best option for Hannah.

The morning of surgery finally came on December 5th and Hannah was taken back first thing in the morning. The surgery lasted for about 4 hours. The doctor came out to let us know how it all went and let us know that there were, in fact, three infected lymph nodes that were about the size of oranges. The goal was to totally remove all the infected lymph nodes, but that wasn't possible in Hannah's case. She had two masses in her neck that went really deep into the neck and had surrounded themselves around her jugular vein and carotid artery, so they had to take extra time to maneuver around those to get all the infection out. The third mass, which was the one on her jaw that was ginormous, was only partially removed because the nerve that controls the bottom right side of her lip was running right through the middle of the mass. The mass had grown right around it like they had her other veins in her neck and was so big that it had caused that nerve to stretch and flatten out. And because they had to try and maneuver around the nerve to get out as much infection as possible, that caused her right lip to stop working for a little while, but at least the nerve wasn't severed causing permanent damage. All in all, the surgery was a success and we are so grateful for such great doctors and nurses who have helped us through this ordeal.

Because there is still some infection left in her jaw Hannah will continue to stay on specialized antibiotics for at least the next three to six months. Her recovery following surgery was difficult for the first few days because she refused to eat, drink, and take any medication whatsoever. It was a real struggle, but she soon  came around and slowly started eating and drinking and taking her meds all on her own again. She is back to being her goofy self running around and playing with her brothers.

I can't say thank you enough to all my neighbors, friends, and family who helped us get through this from prayers, fasting, and taking Hannah's name to the temple, and watching the boys for me during all her many doctors visits, and especially my mom who came down for a weekend to watch the boys for us so Stephen and I could be with Hannah during her surgery.

My mom is truly an angel on earth. She always goes above and beyond when she comes to visit or help us when we need it. She doesn't just stay and watch the kids. She cooks, cleans, plays with the kids, takes them out on outings, mends, does laundry, etc... the list goes on. I mean, she even cleaned my washer! AND left cookie dough in the freezer for us to use later. We got to go shopping together and have lunch for a few hours before she left for home.