**BIG Disclaimer** This is going to be an incredibly long post and include some pictures that aren’t easy to look at. But I’ve been remembering a quote from a recent sermon, ”The enemy of faith is forgetfulness.” So I won’t apologize too much as this is to record and to remember the goodness of God.
On Monday, Wade had the day off work, and we all spent the day catching up from a fun and busy 4th of July weekend. For most of the day, Will seemed completely himself…a happy, easy-going, smiley baby. I remember when I gave him a bath that night that I noticed his neck area had just a little bit of chafing. But the poor guy has reflux, so I just assumed that was the cause. After I put him to bed, he woke up less than two hours later, which was unlike him. He fell asleep again and woke up after two more hours again crying. That continued throughout the night. I was frustrated thinking this was the result of a busy weekend. He must be over stimulated, used to being held, and didn’t want to sleep (boy was I wrong!).
By Tuesday morning, he just didn’t seem right. He never had a temperature and didn’t show any visible signs of something being wrong. The only odd thing was that when I picked him up while he was crying, he would tense up his body and scream.
So I decided to call the pediatrician. When I got there, I explained that I felt kind of silly for bringing him in just because he was fussy. She was nice about it and understanding. After looking in his ears, she said that it looked like the start of an ear infection. I was sad that he had an ear infection at 12 weeks old but was also relieved to know there was something going on and I wasn’t crazy. While at the pediatrician’s office, I noticed what looked to be two small scratches on his face but assumed it was from him scratching himself when he was so fussy the night before. Didn’t think twice about it. That afternoon he started taken an antibiotic and Tylenol.
Throughout that afternoon, the Tylenol barely seemed to dull the fussiness, He still wasn’t himself. And then after he woke up from a long nap, I notice a few more scratches and some peeling on his ear. So strange. I immediately called the pediatrician’s office, but they were closing in five minutes. We were pretty sure it wasn’t from the medicine since it had started before, so she said it sounded like the hand, foot, mouth virus and to watch him through the night and call in the morning if it’s worse. He was fussy through the night again and during a diaper change, we became quite alarmed at the peeling/blistering in his diaper area and within a few hours there were more on his face.
Wednesday morning:
So first thing Wednesday morning, I called to get another appointment. Wade left for work and saw the new blisters that appeared around his mouth but neither of us were too worried yet. We both assumed it was the hand/foot/mouth virus and they’d probably just send him home for the virus to work its way out. But then I started looking up the symptoms online and noticed that it just didn’t seem to fit the description of anything that came up. So strange.
I showed up at the 10:00 a.m. appointment getting very concerned. There were more blisters and he was becoming more and more fussy any time you moved him. The pediatrician spent a good amount of time looking at him and brought in another doctor to examine him as well. They left the room, closed the door, and talked for about five minutes. I was getting nervous. She came back in with a pediatric medical journal, sat down next to me, and put her hand on my shoulder. She said, “I don’t want to scare you, but what I think Will has is a form of a staph infection called Staph Scalded Skin Syndrome (SSSS).” She opened the journal with some sample pictures, and I knew immediately that she was right. She said he needed antibiotics right away and that I should leave straight from there to take him to the downtown children’s hospital. I pretty much lost it from that point on. I had to call Wade and tell him, then get in the car and drive downtown. That was a long drive. I was a crying mess, and I unfortunately let my mind go to some scary places. The scariest and silliest thought was that he had to be OK because I still haven’t sent out birth announcements yet!
Wednesday afternoon:
Once at the hospital, they knew I was coming and ushered me to a back room in the ER. Wade arrived, and the ER doctor came to examine him and quickly agreed that he thought it was SSSS. He asked who gave that diagnosis first and said he was really impressed that she nailed it so early on because he only sees these cases come through maybe once every three years. Then all of the tests began. There were several horrible moments in this four-day ordeal, but those may have been some of the worst.
They set up an IV, drew blood, took a skin specimen, and did a catheter for a urine sample. We stood outside the door and just cringed and cried as we heard our baby screaming. Then 30 minutes later, another group of nurses came in to do a spinal tap. At this point, I was a wreck. Wade & I both had to walk down the hallway and practically hide in a corner. I couldn’t even handle being that close to the room and hearing him. It was such a horrible feeling of wanting to be there for your child, but I couldn’t handle hearing him in so much pain. But even that far from the room, we could still hear him crying. It was truly awful. At one point, my eyes were so swollen and contacts so foggy from crying, the nurses had to give me some saline solution, so I could see the paperwork I had to sign.
Poor baby was obviously in horrible pain. Pain from the tests and pain from whatever was going on in his body. They started him on what would be his first of five doses of morphine. Morphine for a baby…I still can’t believe it. Finally by late afternoon they admitted us into the hospital. To go to our room, they had me hold Will and draped several hospital gowns over both of us and walked me to his room using the back elevators. I seriously felt like I was in the movie Outbreak.
We arrived at the room and just seeing one of those tiny cribs in a hospital room will take your breath away. It felt like forever, but that evening we finally spoke with the Infectious Disease doctor who gave us the explanation of staph. Once at the hospital nobody ever spoke to us in the context of things being dire, but the conversations were all just very neutral the first 24 hours. Lots of wait and see and day by day. It’s hard to know what you’re supposed to think about that. By this point, I was reading a ton of information about SSSS online. Everything said it could be life-threatening unless treated early on. Thank goodness for that pediatrician sending us when she did!
We don’t know for sure how he got it. But we think it was possibly from Tate. He had a blister on his foot (totally thought it was from new shoes!) that took a long time to heal. But we’ll never know for sure. And Tate never showed any of these other symptoms.
I know my explanation isn’t very great, but they way I understood it is that we are all walking around with staph on us (gross!). But the older we get the more immunity our bodies have, which allows them to fight off infections better. In fact, SSSS is most common in very young babies. The doctor said even just a few weeks or months can make a difference in building immunity. The staph got into Will’s system and started releasing toxins, which the doctor explained that it was like his body was being poisoned causing the blisters to appear.
Wednesday evening:
And this thing was spreading fast. It seemed like every hour, I would look down and see a new blister appearing on his skin. They were concentrated on his face, neck, and diaper area and then randomly scattered over the chest, arms, and legs. He also started developing warm redness, which slowly spread over his entire body.
Later that night we got word that his spinal tap looked clear, which was a HUGE piece of good news. They also started him on two intense, broad spectrum antibiotics to fight whatever it could until we knew the specific bacteria. From then on, we just had to let the medicine do what it was supposed to do. New blisters continued to appear and he was still in so much pain. It was absolutely heart-breaking watching his heart rate and blood pressure get so high at times.
But with each day, we really did see improvement. Also by that point, the mood and tone of the doctors and nurses seemed much more relaxed and positive, which was nice to hear. By Friday we were getting smiles from him and noticing that the pain seemed to be lessening. Also by Friday they identified the specific bacteria and adjusted his antibiotics accordingly. They also took him off IV fluids, which helped his swelling come down.
And then much to our surprise, the ID doctor said on Saturday afternoon that we could go home! We were shocked and somewhat nervous. He assured us that the antibiotics were doing their job and that there wasn’t anything they should do there that couldn’t be done at home to help him. He ended up being absolutely correct, because Will is having a great recovery! His blisters are almost gone and healing great. Now he is peeling from the top of his head down to every single toe, but that was to be expected. Other than that, you probably wouldn’t even know what had happened less than a week ago. Amazing.
Saturday afternoon – “I’m outta here!”:
The entire thing is surreal. On the first day, I was just a mess fearing the worst. And then once we knew he should be fine, I turned mechanical just doing whatever we needed to take care of him and to get him better. I think it was Friday night when things got quiet and then once we got home that the emotions came flooding. They were emotions of going through something this scary, of seeing your baby in terrible pain, and of gratitude for the amazing amount of support we had from family and friends.
This will definitely be an experience I won’t forget…the good and the horrible. But the good parts were incredible. The hundreds and hundreds (no exaggeration there!) of people all over praying for our baby. The countless texts, emails, and calls. The friends that came to the hospital. The meals that have been arriving since we’ve been home. All of those that have helped with Tate. We just can’t thank you enough. It gives me an entirely new perspective for how meaningful all of those gestures really are.
Mostly, we are incredibly grateful that the Lord answered our pleas in this way. Being in a children’s’ hospital, you can see there are so many situations where the answer to prayers is not the answer they wanted. It’s hard to understand, but I just tell myself that we can’t figure it out. For now, I will be forever grateful to be looking at this adorable, healthy, smiley face.
Tate was beyond excited to ride his Big Wheel (patriotically decked out... thank you very much) along with all of the big kids. He caused some nerves on my part as he was determined to ride directly behind the fire truck. Thankfully, we all made it safely to the grand finale, which was a tour of the firetruck and a classic burger and hot dog cookout in the middle of the back cul-de-sac. Good times!
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