"Me just scared mommy."
Two phrases that broke my heart into even smaller pieces this episode.
It seems like with each episode, he gets more symptoms. This time he had a runny nose, cough and started throwing up... A LOT. My poor baby. He still gets the sores in his mouth, red painful throat, huge lymph nodes in his neck and possibly groin, tummy pain, joint pain, rash and high fevers.
Because it is the beginning of flu/virus season, and because of all of these scary viruses (Ebola and EV-D68), I decided to take him to the Dr the first day he started running fever. He also had the runny nose, coughing and sneezing, so I wanted to make sure it wasn't something else. It wasn't.
I know in the last post, I said that we would try Tagamet/Cimetidine, but after running it by our pediatrician and speaking with a very trusted pharmacist, we felt like the possible side effects didn't seem worth it. It seems like Rowan may have his mommy's crazy neurological system, which causes him to get EVERY side effect, and then some, from medications. I did find out that Tagamet is the pill form, but if you want the liquid form, you have to have a Rx. I even had the pill crushed up and in apple sauce, then decided not to give it to him. I believe there is only a 20% chance it will help anyway.
Again, day 3 was the worst. He was really in a lot of pain this time- or maybe he always has been, but couldn't voice it as well as he could this time. He didn't eat much this episode, and on day 3 he stopped drinking and eating all together. Around dinner time he asked for a "happy dinner"- which is a happy meal (no judgement, please! ;) ). Of course I would get him anything, if he was willing to eat it. I started giving him meds every 3 hours instead of 4 this time. His fevers have started spiking after 3 now. I knew we had 30 minutes to get to McDonalds and back before I could give him some more medicine. I took his temp before we left, and it was around the 102.5 mark. That's kind of where it hangs out on day 3 until it gets close to the 3 hour mark. So, we packed up and drove to get a "happy dinner." He asked if he could have the apple juice to drink on the way back. OF COURSE!!! I was thrilled! He wanted food and drink!! Thats where it took a turn. About half way back home, he started throwing up- over and over and over. I pulled the car over on the side of the road, because he couldn't catch his breath. He was strapped down in his carseat, and couldn't lean forward. I was afraid he would choke. Here I am, running like a mad woman around to the other side of the car, still in my "sweats and flip flops," with all of this work traffic passing. My daughter got really upset, because she knew something was wrong with her brother, (she just started that this episode- I love how close they are now!) and lost it! So she is screaming and crying, and he is throwing up all of himself and the car and I am trying not to panic. I loosened the straps so he could lean forward, and of course I had NOTHING in the car that he could throw up into. Once he stopped, I wiped him off the best I could, calmed him down the best I could, and had to tighten the straps up again to drive the rest of the way home. NEVER again will I go get a "happy dinner" on day 3! I thought that would be the worst part.....
Once we got home and I got both kids out of the car, (the carseat, and car were just going to have to wait to be cleaned) I rushed Rowan to the shower to wash him off. He was crying and shaking. I knew his fever was starting to spike. His feet, hands and lips turned blue and he was shaking so badly. I rushed to get him dressed and warm, then get the meds. I know it sounds like it doesn't make sense to get him warm, but his body was chilled from sitting in the wet throw up and was trying to "warm itself up," which cause his fever to go even higher. Even after giving him the meds, it was still creeping up. We got to almost 105. I called my wonderful neighbor to help me because my daughter was still upset, Rowan was telling me how scared he was, and I was trying not to show how terrified I was. So thankful to have such wonderful neighbors and live in such a great place.
Rowan had so much heat coming off of this little torso and head that while I was holding him, I was sweating. He couldn't stop shaking, and I promised him I wouldn't put him down until he wanted me to. My poor, poor baby. About 30 minutes after giving him the medicine, he threw it up. Now what do I do????? I didn't want to over medicate him, and I had no idea how much had actually gotten into his system. I knew that his fever was continuing to go up, so I gave him more. Thankfully that extra dose made it start coming down, and by 8:30, it broke! I checked him every hour. His little body was so very exhausted. I was terrified that he would start throwing up in his sleep- so I watched him- all night. At 2:30 am, it spiked again, and he started throwing up in his bed. I was just walking into his room when he started. So thankful that The Lord directed me into the room at that moment. My little guy needed me, and I was right there. He kept saying. "I'm awake mommy, I'm awake!" (I don't think he really was all that awake- and that really scares me). He actually finished throwing up- in his bed, because why move him when its already all over the place, and then laid back down in it!!!! How terrifying is that??? If I had been asleep or not heard him....I don't even want to go there....
His fever broke 3 times before this episode ended. Yesterday was a day of recovery. He took an almost 4 hour nap, and today he is back to himself and at MDO! It is amazing how quickly it starts and stops. I called and scheduled an appointment with a pediatric ENT for Monday morning. I am ready to start being proactive and push for this surgery. I don't think medication is an option for Rowan. If the surgery doesn't stop it, we will look at other options, but with each episode being worse than the one before it, I can't not push for it.
I did find a new mommy friend that has gone through the same thing with her son. Small world- my husband just happened to find a company out of Atlanta to do some work with the company he works for, and the VP of that company has a son who was diagnosed with PFAPA about 12 years ago. I don't know how they started talking about it, but I am so thankful they did. He gave us his wife's number, and I called her today. It was so nice to talk to someone who knows EXACTLY what we are going through. AND.... her son had the surgery and has been fever free since!!!! She said that immediately after the surgery, he turned into a different child! Praise The Lord!!! I pray the same thing happens for our little guy.
Until Monday.......
I just love him so. I am so blessed with two amazing babies!!!
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