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But it's always manageable, right?
Let's start with the rash....
Apparently Ethan has a few different rash scenarios goin' on. Okay, so the rash on his back, abdomen & arms are still the GVHD rash that we've known about for a while, that seems to always respond well to the medication ointment. The rash on his face, is a combination of clogged pores, and eczema. And the sores behind his ears, on his wee-wee and between his toes are in the eczema family as well. His dry and irritated scalp is a form of psoriasis. All three types of rash, of course, have to be treated differently. The face gets no treatment right now since the pores are clogged. The GVHD rash continues to get the medicated ointment. The eczema gets neosporin since they are "open" rashes and the scalp gets baby oil. And any area of the body not attacked by a rash gets Cetaphil cream.
Whew! Very sensitive skin to say the least.... but the doc said even still, Ethan's skin looks great, all things considered. Apparently GVHD can get pretty bad, and Ethan's case is still considered mild. Hard for me as his mom to believe, but I trust his doctor's experience. We can't treat his face so keep praying for the bumps to start going away. And we still aren't sure what's causing the eye irritation. Could be allergies, could be eczema... so pray they get better, too.
Now on to drawing the blood....
If Ethan could describe the situation (which he basically did, with his non-stop screams and giant tears to match!) he would say the whole experience was a nightmare. It took 3 of us to keep his arm still while they drew the 3 viles of blood that they needed. He sat in my lap, and I was basically giving him a hard bear hug. And the nurses were keeping his arm held out tight and straight. He is a very strong child. No, seriously... VERY STRONG CHILD. I tried to warn the nurses. But it didn't take long for them to understand - and hold his arm tighter. He tried to yank his arm away - while the needle was in it?!?! - several times. Not at all pleasant. Horrible is more like it. But it only lasted about 2 or 3 minutes and they only had to prick him ONCE and they got all the blood they needed the first time. I am THRILLED about that!!
However.... Ethan's experience only got worse. Today was also shot day. So about 15 minutes after they drew his blood, and after I'd finally gotten him to calm down... they came in and gave him two shots. One in each leg. Yep, not kidding. And whatever you are currently imagining in your mind about Ethan's reaction to this, I guarantee it was worse. After that point, he immediately started crying and clinging to me anytime someone walked into our room. The poor girl trying to take Ethan's temperature, about an hour later, didn't stand a chance. So here we have it. He's now going to be petrified to go to the doctor. It was only a matter of time, really. But with the central line, he never experienced pain during the visits. He simply enjoyed getting out and flirting with the nurses.
This will no longer be the case.
Oh well.... it could have been worse, right? They found a vein the first time. That was a major blessing. And we have two weeks before he has to endure that again.
Two weeks.... then we repeat.... *sigh*
Anyway, overall his counts look great. And I really felt the Lord guiding the conversation with Ethan's doctor. We talked about many things, and it'd take too long to explain all the details we talked about, but it was clear that God was in the details. I appreciated that so very much. Oh and the doctor didn't feel like the issues with the rash should change Ethan's weaning schedule! She said that his skin will be a factor as his body continues to accept the new growing cells and that all of this completely normal for even up to a year after transplant. She said that his immune system is getting stronger and the sooner he's off the immunosuppressant medication, the better it will become. So she's in no hurry to keep him on it any longer than we'd already discussed. What a wonderful answer to prayer it was to hear that!
Still pray for his sweet skin. We certainly don't want anything to get worse. I sure hope these different tactics show signs of improvement soon.
I've been thinking about something lately, and I'll share it soon.... but the tummy's growling and I gotta go eat!
6 comments:
Skin, just like in the Patch the Pirate song, sometimes has to take a needle. And my dry-skinned kids endured many years of rashy, itchy, sensitive skin, which has become just lovely after time. Yes, the whole waiting game is not fun, but at least it becomes boring and monotonous and forgettable as the years go by!! After a while, you won't even remember those rashy days, until someone reminds you(like you did to me!) Thankfully, God cares about that skin very much!
Love, Amy
POOR BABY!!! I can only imagaine what you were thinking seeing your baby go through something like that and knowing it is necessary! And then knowing he has to do it again in 2 weeks :( But praise the Lord, they did get what they needed in one prick. I had an interesting blood draw experience today but nothing in comparison to that! If I could, I would stand up to have them prick me 100 times over pricking that precious baby boy! Praying for his skin issues.
Ohhh poor baby and mama! i'm sorry it was so rough! we are happy to hear the good news, though, and will continue to pray that the good outweighs the bad. love from us!
Here is some un-asked for advice form a total stranger!- I have a 4 yr old with mild/moderate eczema and Eucerine calming cream has helped some what with the over all mild dryness. And the Eucerine Aquaphor has been great on the more moderate places... like his hands, ear creases and mouth. Obviously you would check with dr's before putting anything on that baby boy, but there's my 2 cents! Jennifer Glover- (Jason and Kari's friend)
You are not alone. Lydia has the dandruff psoriasis too. I am using head and shoulders on her. Why oh why don't they make tear free, good smelling dandruff shampoo? Oh, because most babies don't have the skin issues. Her dry skin rash on her face seems is annoying. I use eucerin on it. I will try the cetaphil and see if that makes a difference. Hopefully as the house heaters get turned off, their skin can moisturize more. I am praying against GVHD. We only want GVL!
Thanks for sharing these experiences. They are very helpful for me personally.
Not that you need my advice, either, but I definitely agree with the aquaphor advice. My daughter had the WORST eczema when she was about 4 months old until she was almost a year. It looked like she had 3rd degree burns on her face and it itched her so badly - she still struggles with it, but the aquaphor was the only moisturizer strong enough to kick it.
Glad that all things considered it was a great visit :)
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