The scariest week as a mom to-date

I'm just copying and pasting this from my personal blog, so if you follow both, you've read this already. :)

My husband left for a work trip at the beginning of last week. Comically, things inevitably fall apart when he leaves town, so I was mostly braced for the thrashings. And there were some, of course. Landon has been a clingy, needy baby like I haven’t seen since the colic days of Adalyn, so that made for a fun week. I was right in the middle of cleaning our house of detergent, so there was tons of superwashing to be done and floors to be scrubbed with soap, etc.

We made some massive strides in improving Adalyn’s eczema this week. I turned the air up and clothed them, mostly from head-to-toe, in eczema gear. Pants with attached “feet,” onesies with built-in mittens, and Scratch Me Not mitten sleeves (which are a Godsend, as it turns out). We bathed multiple times a day, lathering them in aquaphor after baths and once again, covering them from head-to-toe. We bandaged up the open wounds and kissed lots of “ouchies.”

On Wednesday, I began to notice that Landon’s face was getting pretty intense looking. His face is usually scratched and scabbed up, but this was different.

I sent a picture to my friend, who said it could be impetigo, then my mom said the same, so I googled it and figured this must be what it was. So I called the doctor and asked for a prescription for antibiotics. We really dislike antibiotics because they totally wreck our kids’ guts, but there is a definite time and place for them, and skin infection of this severity needs to be addressed.

I loaded the kids up and took them to Target to have the prescription filled Thursday morning. It was by far the worst trip I’ve had with the kids in regards to their eczema. As you can imagine, people reacted quite strongly to Landon’s face. Most looked horrified. There were quite a few double-takes and the cashier literally just stared at him while checking us out. I could not get out of that place fast enough. My cheeks were flushed the whole time and I just wanted to shield my babies from the gawking. I wanted to hide them under a blanket.

I started the antibiotics and we went on our merry way, assuming everything would get patched up quickly.

I went back to the house scrubbing and the intense reading/researching and started jotting down new ideas to try. Having an infection that required antibiotics really drove home the point that we have got to get to the bottom of their eczema. We can’t continue on like this. They are always at heightened risk of infection because their skin is cracked, raw and open 100% of the time.

All three of us were sick during the week, but again, it was more humorous than anything because as we’ve gotten so accustomed to, stuff just happens when Tim’s away.  I think I might have gotten three hours of sleep on one singular night last week. The rest of the week it was a broken 15 minutes here, 20 minutes there, shuffling between Landon and Adalyn’s room as they cried out. I love my children, but I would really love it if they learned to sleep. Landon will be one in a few weeks and he wakes up every 1.5 hours consistently. It’s insane. Although can you blame them? They are up clawing at their own flesh all night long, fighting that intense urge to scratch that is so common in eczema sufferers.

Friday night, as I was letting go of some tension and anxiety knowing that Tim would be home the following day, I ended up staying up way too late, reading site after site about eczema. I’m amazed by how many different potential “cures” there are, and sometimes I can get sucked in for hours making mental notes of what to keep trying.

And then I happened upon a picture of eczema herpeticum. In all my years of research, I can honestly say I’ve never stumbled across this term. But the moment I saw the picture of the “punched-out” blisters, my heart sank. I knew, without a shadow of a doubt, that this was what Landon actually had. And then I nearly had a heart attack when I read the next few lines, which went a little something like this:

So I googled some more. Article after article said the same: “dermatologic emergency,” “fatal,” “can be life-threatening,” “severe skin infection that requires immediate medical attention,” “The number of days between onset and diagnosis drastically affects the number of days in the hospital,” “often misdiagnosed as impetigo,” “requires antiviral medicine,” “very rare,” etc., etc., etc. What drove it all home was that it is caused by the herpes simplex virus infecting open eczema lesions. I’d had a cold sore the week before.

I felt the blood drain from my face. I had misdiagnosed Landon and just assumed he was totally fine now that he was on antibiotics, I was the one with the cold sore who kissed him and infected his eczema with my virus. It was 3:00 a.m. and I frantically emailed my doctor and called my husband, who was still out of town. Should I take him to the ER now? Wait til morning? What if he died between now and morning? Is that even a possibility?

The questions came and came…and came. We decided together to wait until morning. I could get a few hours of sleep, Landon seemed to be in decent spirits so probably wasn’t knocking on death’s door and I wouldn’t have to wake the kids up. In the morning, Landon’s face had gotten a little better but Adalyn had a blazing fever and was so pathetically sick. Of course. So I lugged the kiddos to Children’s Mercy, where the doctor took one look and said, “Oh, that’s eczema herpeticum. Has anyone in your house had a cold sore recently?” Punch. In. The. Gut.

She told us they may very well have to hospitalize him, and once again, my heart sank. She said she’d consult with the dermatologist and since he seemed to be in good spirits, she’d push to allow him to come home with us and do the medicine and skin treatment regimen at home. Ten nail-biting moments later, she came back and said I could take him home as long as I promised to come back if the sores spread, particularly anywhere near his eyes. I did, of course, and they sent us on our way with lots of instruction and four prescriptions.

And now, here we are, Sunday evening, with three very sick kiddos who need lots of cuddling and kisses. But a grateful heart, because it could have been so much worse. And I know that. The what-ifs are killing me. Why had I just happened upon this obscure mention of eczema herpeticum when I wasn’t even looking up anything to do with skin infection? What would have happened if I hadn’t? If I’d gone on assuming it was impetigo? It’s too much for this mama’s heart.

I believe I learned something I needed to learn this week. I’ve been so, well, whatever about skin infection. I’ve read time and time again how prone to serious skin infection kids with severe eczema are, but I guess after all this time and never having contracted one, I had become dangerously indifferent to the whole idea.

Now, my sweet little boy has a high likelihood of battling this skin infection for life. They said just like cold sores, once you have it once, you have it forever. The virus will stay dormant in his body, and every open sore is at an extreme risk of becoming eczema herpeticum. Every illness he has will put him at high risk of an outbreak. It’s a lot to take, because my heart aches for my baby. But in the end, this will be a blessing in disguise, because to learn first hand that my baby could actually die because of his eczema is all I need to know to stop at nothing to solve this.

I’ve hit a fork in the road: go left, cross our fingers and hope they grow out of it, or go right, fight like mad and do whatever it takes to fix this for good.

What a friggin’ week.

Because I should end on a positive note (and this is VERY positive), Adalyn’s face now has NO eczema on it! Praise the Lord! NONE (this picture is two days old so there was still a tiny bit of eczema left). Her wrists and ankles have improved leaps and bounds this week. I am so very, very thankful!