Things have been so busy with work, playing with S&E, and a few Dr's appointments thrown in because of this annoying rash on Serena's face that won't go away.
It all started with a small red rashy area near the corner of her mouth. I showed the Dr. after their March RSV shots and she said it was nothing to worry about and just put cream on it.
As the week passed it began to get a little worse, but not wanting to over react, I just kept an eye on it. I called the nurse the following Friday and she said no need to come in for a rash, try hydrocortisone cream over the weekend.
By Monday it was worse and I brought her in. Our pedi diagnosed her with Impetigo, although our homecare nurses disagreed with this dx. Anyway we tried the ointment for this bacterial skin infection, and there was no improvement as of Friday. Friday I brought her back in and this time the pedi tried an anti fungal cream thinking it could be a result of a reaction from her Flovent since I pointed out that the rash was outlined on her face the way the mask sits on her face with the Flovent. She also prescribed an oral antibiotic to try over the weekend if the anti fungal cream didn't work. I said, "she's ok to take this even though she's allergic to penicillin?" Pedi's response, "she's allergic to penicillin? Oh, she can't have this then." UUGGGHH good thing I said something!!!!
Anyway, the antifungal cream made her face worse...very red and angry. At this point I was becomming very frustrated and felt only a pedi dermatologist would be able to tell us what was going on. My request for a swab of her face was denied because it was rendered pointless by our pedi since we all carry staf infection on our skin. I'm no expert I just thought it might be helpful. So I call on call Sunday to say the rash is worse and I'm taking her off the anti fungal and I've started the oral antibiotic as of Sat. On call was not much help, afterall she'd never seen the rash. So Monday morning I called the pedi's office and demanded to get a referral to see the pedi derm asap. I got a call today and we see the dermatologist tomorrow at 4. In the meantime Edwin has a red spot on his chin, but that looks like eczema. He'll be seen as well.
So it's been tough, and I haven't taken many pictures because Serena's face looks so terrible. It looks a little better since the start of the oral antibiotic but it's still there all around her mouth, under her nose, and around her eyes...top lids as well. It hasn't spread anywhere else..not on her hands even and she is itching and rubbing her eyes and face quite a bit. So let's hope we get some answers tomorrow.
In addition, Serena has a slight cold with some wheezing. She went from two nights without O2 while asleep ALL night, to needing a 1/2 liter once the inflammation set in. It's so clear her tracheomalasia is severe, and with any inflammation from a cold she closes right up and needs a lot of flow to keep her oxygenating well. Without the tracheomalasia O2 would be long gone for her. Let's hope this cold passes and she can practice more nights off her O2.
Serena also had a follow-up modified barium swallow done last week. She is still penetrating and aspirating on every consistency of liquid. On her formula she aspirates with it thickened with up to 2 teaspoons of rice cereal per ounce just as she does with the 1/2 teaspoon per ounce we have been doing. She does not aspirate on stage 2 foods or solids. I haven't spoken to pulmonology or the ENT at MEEI yet, but I have phonecalls into both places. Her paralyzed vocal cord is to blame for the aspirating and there is a chance the ENT may want to attempt a procedure for it because she continues to aspirate on liquids. Thankfully, she has not had any pneumonias, and this is a very good thing. But aspiration is not a good thing and we'll have to see what the Drs want to do about it.
Today we have NICU follow-up which is 3 1/2 months over due. I'm a little nervous because EJ is quite delayed in all areas, but I'm trying to stay positive and I hope everyone is honest with me and can really give us some good feedback on what can help with his low tone in his trunk.
In spite of the rash, the aspirating, and the struggles with development, Serena and Edwin are AMAZING. They are so much fun and sooo lovable. I love spending time with them and am really looking forward to the warmer weather that should be coming our way. I can't wait to get them outside, and eventually into the pool. They are happy, playful, and curious. They bring so much joy to our lives.
So sorry Abby about not completing the questions...life is too crazy and I felt an update on S&E was more needed since I've been slacking.
Enjoy the pictures. Note Serena's rash.
Pics from about 2 1/2 weeks ago...see the small rash around her mouth
Also note the piece of turkey on her nose!
Now see the rash from this weekend after we tried the anti fungal cream...see how red?
4 comments:
You must be so frustrated. Could her rash be something as simple as an allergic reaction to a new food or soap? Have they suggested benadryl? Kinnick gets strange rashes when she's in the hospital - we think it's the soap they use to clean the sheets. They give her some benadryl and the rash always goes away. If it's an allergy, the benadryl will cause it to go away quickly and then return when it wears off.
The pics are great! They are just so cute!
Funny, Arianna had the same thing a few months ago and I didn't think anything of it (how odd for me). I was actually editing a bunch of her photos to take it all off her face.
Funny that while doing my retreat this weekend I did a bunch of photos from this time last year and some how I managed to miss that Arianna was yellow - EXTREMELY yellow for 3 months. How did I miss that at the time?!
I'll blame it on placenta brain - oh wait, I wasn't pregnant when either happened... sigh.
I'll be interested to hear what you find out and how to prevent it because that exact rash has happened to Ari a few times. We don't use a mask for her nebulizer treatments because she's actually really good about putting the 'blower part' in her mouth - odd huh?
Hi!
We have been back and forth with pediatric derms because of Tony's eczema!! It can casue such a headache!!
On a positive note, your twinnies look SO much alike!!! They are both so beautiful and perfect!!!
BTW, are you up for Jon and Kate plus 8 in July?
Love,
Randi
Don't worry about the silly meme!
And I am so sorry about the rash and the aspiration. Have you considered trying her on Simply Thick? You can get the consistency of it much more even than thickening with rice cereal (just use a hand blender and not just a whisk or shaking) and that might help some. It definitely helped us. I'd be more than happy to share our stash with you if you want to give it a try. It IS a lot more expensive than rice cereal, but worth it.
I hope the cold is better and that the NICU followup appointment goes well. We're thinking a lot about you guys and keeping our fingers crossed, too.
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