Leave it to Ben to get the rare complications

So, back in May, I posted about how Ben had hand, foot, and mouth disease. He had a much longer course of it, due to his immunosuppression. He had many more lesions on his legs, arms and butt. And they were much more severe and lasted a lot longer than other children would have them. But, he got over them in about 3 weeks or so. He seemed to be better after that.

This week we were at my mom's house in Indiana. We had a lot of fun there and the girls got to do a lot of swimming in her pool. Ben went in the little baby pool a bit and splashed around, but never really sat down in the pool. They all also had a ton of outside time in my mom's "park" (their word for her backyard because it has a swingset and slide). On Saturday, we noticed he had little white lines on his fingernails. It seemed a little odd. On Sunday, I noticed his fingernails were starting to flake off and come apart. He also had a rash. It was a very clear rash, almost like a heat rash on his arms and upper body. But today it is on his legs.

Today, I called the pediatrician to have him seen because his one fingernail was almost off. That was a weird call to make. "Yes, is your son sick?" "Well, not exactly sick, but his fingernails have these weird white lines on them and they're falling off. I think he should be seen." "No other symptoms though?" " Well no....but, this is Ben...." "Oh, ok, let me see what we have...can you be here at 3:20?" And off we went.

So, the nurse got us back right away and asked what was going on today. I told her, and told her "and of course I googled it, and the first thing that came up is all these nutritional deficiencies. So, I figured maybe a doctor should see him and make sure that's not actually it." She laughed and said of course he should be seen, especially since it looked painful for him (and it is, he keeps telling me "Don't touching my fingers."

The doctor came in and said "well, the good news is, this is most likely not a nutritional deficiency of any sort. What it most likely is, is a rare complication from the hand foot and mouth he had last month. Most kids, it does not happen, but very very rarely, when a child has hand, foot, and mouth, around a month after the disease has run it's course, they will get little white lines on their nails and they will lose their nails. The good news is, once they lose their nail, it will come back and it won't happen again. But, it can become easily infected. You'll notice this if it becomes very red and has a hard red lump on the nail bed." She told me that we should wash with antibacterial soap frequently and especially after he plays outside. And to let his teachers know to do the same. I guess I'll have to buy some antibacterial soap to send in since I don't think they use that in the school. The rash, she said was most likely an allergic reaction to something. It did NOT look viral at all. We are supposed to lather him with lotion and let him go shortsless when at home.

So, leave it to Ben to get the rare complications from a disease that we thought he was over. Obviously, this is why we try to make sure he doesn't get any diseases. Hopefully this summer will be a little easier on him, since there are much fewer kids in his class in the summer. There were only 4 kids there this week on the toddler list. A lot less likely to get sick with 4 kids there as opposed to 11. I'm sure there will be more there as the summer goes on, but even last year, he had a much easier time during the summer than he did when he started in the fall. So, hopefully he will stay healthy this summer. And hopefully it won't be too painful losing his fingernails. It does seem like he is going to lose every single one of them. He already has 2 of them that are just hanging there. And the rest of them are looking like they are heading in that direction. We will see, I suppose. For now, I am just trying to get him to keep band-aids on the ones that are falling off!

Helping pick berries in grandpa's garden

Riding Big Jake at grandma and grandpa's

Playing with his truck while wearing pearls

Summer fun!

We are gearing up for another summer of fun. Writing our lists of what we want to do this summer and where we want to go. We are heading to my mom's house in IN soon. We will be outside a lot for that, in the pool or playing in her "park" (what the girls call her backyard that has a swingset and slide and seesaw). The kids are all going to school 3 days a week this summer, which means we have 2 weekdays to do things as well as 2 weekend days to do things. We will be outside quite a bit, as well as having some fun at jumping places and indoor gym areas. And I know the kids stay outside a lot at school as well.

While I love having fun in the summer, it also means something else, the possibility of sunburns. And while sunburns may be no big deal to others, (you burn, put some aloe vera on it and have a nice tan after) they are a big deal for Ben. He is at a much higher risk for cancer, especially skin cancer, because of the immunosuppressants he is on. So, we slather him up with sunblock every time we go out. Any time it is at all sunny, he has sunblock on. The girls and I wear sunblock as well, as I feel that skin care is important and I do not want any of us at an increased risk of melanoma. We also have Ben wear a rashguard and swim shorts when he is swimming outside. When he is swimming inside, we sometimes take the rash guard off.

Ben also drinks a lot of water normally. This is actually a really good thing in order to prevent dehydration, especially in the summer. He has also started drinking 2 pediasure's per day at the pediatrician's request to help with his weight gain.

There is some good information related to heart transplants and summer at:
http://smallbeats.childrensomaha.org/summer-safety-tips-child-heart-transplant/

Ben should be able to play like every other kid that hasn't had a heart transplant, in summer or winter. We just have a few minor things that we have to take extra precautions with. Like at the beach, he can't go swimming in the lake water. He can wade out in it, but no swimming in it due to the likelihood it may have e.coli. E.coli would be much harder for Ben to fight off due to the immunosuppressants. Swimming pools have been deemed ok though. He should be able to play most sports as well (when he is old enough-though I am highly considering a tots soccer or tots t-ball soon), though the transplant team tries to discourage sports where something could fly at the chest. But, right now he is 2, so we haven't worried much about that yet. We are more worried about the possibility of skin cancer as well as any diseases that may be lurking. With the added quandary of, he doesn't get enough vitamin D, so now we have him on vitamin d supplements once a month because, as I said before, we can't just let him sunbathe-due to the increased cancer risk.

So, we will take all of our precautions, but, we still plan on filling our summer bucket list and having lots of fun indoors and outdoors this summer. We all know what a LONG winter it was, we (the kids and I) all need some outside time now! And, we do not want Ben living in a bubble!

Having a lunch picnic at the park

Playing on the seesaw after lunch-lots of sunblock used this day!