Feb 25 2011

It has been a busy week between Rachael and Sarah having some stomach/intestinal bug and getting ready for Suzanne & Mill's wedding tomorrow.

Deborah is maintaining at this point; hard to see any further progress. This morning she developed a rash on her face, across her nose and cheeks primarily. It has faded in color though the "bumps" remain. No fever or other symptoms, so we will watch her closely for the time being.

Valentine's Day 2011

Things remain much the same with Deborah which can be seen as both encouraging and disappointing. I am encouraged that she is holding her own, not catching anything else while her immune system is already stressed, and maintaning a good attitude about life in general. I am discouraged with how this is just dragging on; she is still so pale and tired much of the time. The dark circles under her eyes are not as common either. So, her overall appearance is looking better - eyes are looking good, dry skin is basically gone - so I am tipping the scales to the good side of the situation! :)

Follow up day at the pediatric clinic

So, it is time to follow up with the pediatric clinic today. A new doc- literally since we saw a resident, and the consulting physician did not feel it necessary to come in (we did not know that one either) - and a repeat of all the same paperwork. However, this form had a new question, right below the question about any smokers being present in the house; Are there any firearms in the home? And how exactly is this related to my child's medical history and/ or current treatment?! None, and that information is none ya business!

Don't these people share information within their system? Seriously, they did not even know why we were there! The nurse commented that Deborah's paperwork said, "followup for a rash"; not even a note about the Kawasaki's. They had none of her medical history, no record of the treatment she had or the amount of time she was in the hospital, nothing about the aspirin regimin she was sent home on, nothing.

All said and done, we spent 20 minutes educating the resident about Deborah; her medical history, her symptoms leading up to treatment, what the hospital did, and what we are currently doing. The nice young doc. checked Deborah's heart, ears, eyes, mouth, throat, lymph nodes, and reflexes. She also asked her about school and what grade she was in. When Deborah replied that we homeschooled, the doc came back with questions about Deborah's scholastic abilities; can she add, etc. Basically a well child check.

And then this fresh out of the box doc recommended a flu vaccination. Seriously?!! The paperwork given to us at the hospital is very clear; no vaccinations for 6 months after treatment with IVIG. And the flu is to be avoided because of the aspirin regimin. I worry about the medical community in this country!

She did ask to make sure someone in the medical community is following up with the aspirin Deborah is taking - we will follow up with the cardiologist for that - and suggested we make an appointment with the clinic for a well child check, since she could not do that today because it was scheduled as a follow up. Okay, whatever. And no thank you. We thanked her nicely - I hope- and went on our way. We will find a pediatrician or family physician of our own choosing for future appointments.

On a more positive note, I now have some confirmation that she has indeed lost weight. According to our scales at home she was 49 lbs mid January (thanks to a school project) and today she weighs 43lbs on the same scale. I did not need the scales to tell me she has lost weight; she is small enough that weight loss is noticible in her face and at bathtime. But, I thought that I might be fabricating issues just because I am worried about her, so outside confirmation eases those fears a great deal. I do want to start weighing her more regularly so I can have a better idea of when she starts gaining again.

Most importantly, there was nothing to cause the doc concern, and that is a blessing! Her eyes are still not clear, but you need to look closely to see the webwork of veins now; definitely an improvement. And naps are becoming a favorite time of the day - for Mommy too!

Tip-Toes

Since Deborah was young, she has been particular about her feet. She loved shoes, all kinds of shoes; her shoes, my shoes, stranger's shoes. And dress up shoes were her favorite thing ever. The mere thought of shiny, feathery, bejeweled, backless, high heeled shoes was (and is) enough to make me cringe, but she absolutely loved them.

Somewhere around 4 years of age, I noticed that when she had no mules to parade around in, she simply walked on tip toe, as if that were the most normal way to walk. She does not do it all the time to be certain, but it is so much a part of who she is that I rarely even think about it anymore.

The week when the Kawasaki's was just starting we knew she did not feel well; even when she was playing, she was just not herself. But it was not until we got home from the hospital - after she was feeling considerably better - that I realized a clue that I had been missing; no tip-toes! When she began doing it again, just once in awhile, it made me smile because I saw it as a sign of her improving spirits. :)

Yesterday, as she was heading off on errand of her own, I heard her say, "I love walking on my toes." I could hear the joy in her voice, and it did my heart good :)

In other news, her eyes continue to improve; they are very close to clear now. She has still not had any peeling skin, so perhaps that will skip her altogether just like the strawberry tongue and swollen lymph nodes.

Friday, February 4, 2011

Mornings are a good time for Deborah; she is at her peak in energy after a long night's sleep and looks her best. As the day progresses, she starts to look more hollow-eyed and pale, even after she takes a nap in the afternoon.


She wants to run and play, but can only do so for a few minutes before she is just wiped out, and then she is tired for the rest of the day. So, we are encouraging more quiet play; coloring, play doh, dollhouse, board games, movies, and computer games are all on the list. Her biggest disappointment is being unable to go out and play in the record breaking snow we have right now; she sits a the window and watches the older kids outside. Hang in there Sweetie, it will snow again after you are feeling better - even if that means next year!


Some encouraging news on the eating side of things; last night she asked for seconds. :) It was not a stellar meal- just beans, chips, and cheese- but she not only cleared her plate but asked for more. Yea! First time since she started getting sick she has done that. We are hoping that means good things. :)

February 2, 2011

You can see the beautiful smile - there is a loose tooth in there - but can you see the bloodshot eyes? They are so much better than they last week! The bloodshot eyes, called conjuctivitis, in combination with a fever that is unresponsive to normal doses of fever reducing medications, and a rash are the symptoms that cinched the diagnosis of Kawasaki's for Deborah's case. Most of the other symptoms were not present in her case.

She still looks tired, but this was taken after a three hour nap this afternoon.

Her fever remains normal. All that remains of the rash is a sandpapery feeling along her skin; no remaining inflamation, and no peeling as of yet.

What they didn't tell us...

I find it interesting that there is so much that medical personnel did not tell us, for whatever reason. I find it a lesson in how to ask the right questions.

Among the information we have gleaned from the internet as well as friends in the medical community:

• Deborah is not "cured". This is a biggie for us. Normally when you leave the hospital it is with the idea that you are better and just recovery remains.Kawasaki's still has to run it's course and can take as little as 2 weeks or as long as 12 weeks.
• Deborah is going to be tired - very tired, for quite awhile.
• emotional fragility comes with it. For us, this has meant that she is uncharacteristically prone to tears. Other sources have mentioned that anger can be another manifestation of this, but we have not seen it as of yet.
• the risks of the medications were briefly mentioned as vague risks; no details were discussed
• the complications that can be a result of the disease itself were glossed over. The possibility of a heart attack if she remained untreated was trotted out, but nothing else.
• even if she is cleared by the cardiologist in 8 weeks, Deborah will need an echocardiogram every 1-2 years for the rest of her life to watch for damage not that is not immediately apparent.