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.

The real reason for this blog

It has occurred to me that it might be hard to keep track of Deborah's recovery over such a relatively long period of time, so I wanted to have something like a log, or diary to keep track of her progress. I know that time passes so very quickly and it can be difficult to winnow the daily details out of memory, so I am hoping to use the blog for that purpose.

Not exactly witty, fun reading, but I hope it serves it's purpose well. :)

The "Treatment"

There is no test for Kawasaki's Disease; the sympotoms are quite distinct to the disease. Similarly, there is no treatment for the disease itself, just a treatment to mitigate the effects of the disease. For a complete description, you can google it or check out this site.

The long and the short of it is that God's timing is perfect. the right people were in the right place at the right time to properly diagnose and deal with Deborah's illness. Had we gone to the doctor any sooner, a correct diagnosis would not have been possible because she was not exhibiting enough of the characteristic sympotms for diagnosis. Had we waited and gone later, her risk of long term repercussions would be much greater. God is good!

Late Thursday afternoon( January 27, 2011) , we were admitted to UMC Women's and Children's Hospital so that Deborah could be monitored while recieving the IVIG and large doses of baby aspirin which are the recommended course of medications to minimize the damage that can be caused by Kawasaki's. Both treatments have their potential risks, but are the only treatment at this time to treat Kawasaki's.

Armed with the tv remote and the nurse's call button Deborah was ready for just about anything.

After some IV fluids to rehydrate Deborah, her treatment included 4 bottles of the IVIG to "boost" her immune system and large doses of baby aspirin (6, 81 mg tabs to be taken every six hours). She handled the medications and the frequent monitoring without a problem. The oral dose of aspirin administered in the middle of the night that necessitated waking her up was more of a challenge, but Dan and the nurse managed to help her through.

Since I am still nursing Rachael, I went home to sort things out with the kids there and give everyone assurances for Deborah's recovery and sustenance for Rachael that night and the next morning before returning to the hospital. Thank You Grandma Suzanne for providing meals and being available to the family during this time; you and Grandpa Jim are a consistent blessing in our lives!

Once Deborah had recieved the IVIG and no longer ran a fever, we were waiting on an echocardiogram to be performed before we could head home. At the time, we thought that the test was to check for damage from the Kawasaki's, but we have since learned that it had two purposes. 1) it serves baseline for the cardiologist to compare to in 8 weeks when we return and 2) serves to check for any pre-existing issues Deborah might have had that would complicate her recovery. Once the test results were back, we were headed home!

We continue to medicate with a single dose of baby aspirin each day to keep the blood thinned but other than that it is a waiting game. All we can do is encourage her rest, eat, drink, and recover. The disease can take a long time (some sources say as long as 12 weeks) to run it's course, but I am thankful that we can weather it at home. In 8 weeks we go in for another echocardiogram and any further treatment will be determined then.

The Diagnosis

Thursday morning, January 27, 2011. After an uneventful night, we are hopeful that Deborah is on the mend and that the rash is just part of some random virus going around. Around 8 o'clock I wake her up (she is normally an early riser) and check her out. Fever? Check, and pretty warm too. Rash? Spreading to her arms and legs, and quite inflammed and warm to the touch. New symptom: her right eye is starting to appear bloodshot. Is this a new symptom, what? She is still tired but willing to get up and get dressed so we can go visit the doctor. No one else has any symptoms at all so I pack up Deborah and off to The Walk In Medical Clinic we go to have Dr. Mack check her out.

Thankfully the wait is short and we brought a book to pass the time; The Complete Madeline. At that time, I realized how long it has been since she has needed to go to a doctor; he had last seen her in 2008! So, new paperwork had to be filled out, but in short order we are in the exam room and the good Dr. takes a look. He and suspects strep with a sideline of scarletina, so he swabs her throat and runs a culture there at the office. A few minutes later he returns with the results:Negative for strep. We discuss symptoms some more and then he refers us to the Women's and Children's Hospital (I know it as Regional, but the University system has recently bought it out and changed things up) for them to take a look.

After a quick call to Dan to let him know we were headed over to the hospital and a mass text to friends and family asking for prayer, we were off. The Dr.'s office had called ahead, so the ER staff was ready for us and got her into a room while I filled out the necessary papers. Through this entire thing Deborah is calm and cooperative, everyone is impressed with how mature she is. :) When shown the pain scale, she said that she did not really hurt so she picked a "2"; the nurse commented that most adults make out like they are dying and choose a 9 or a 10 all the time, lol!

So the ER doctor and nurse check her out, take her medical history, razz me for not having a pediatrician and for not having Deborah immunized, blah, blah, blah, and are still stumped. Everyone can tell she is dehydrated, has a fever and a rash, but the rest is a mystery. And now her eyes are bloodshot as if she has been on a 3 day bender, but her spirits remain upbeat. The ER room has a tv with a remote and, much to Deborah's delight, cable tv! Deborah is now content to move in, perhaps forever, lol! They run another strep test along with several blood tests and ask for a urine sample. Um, she has not peed since the day before and today is not looking too promising either. They agree to letting us try to hydrate her orally before putting in an IV; bring on the popsicles! A small bottle of water, cup of ice cream, and 3 popsicles later, Deborah announces (during a commercial)that she can now go to the bathroom. Yeah! Now we wait.

The doctor returns with the results, nothing conclusive but the blood and urine tests are giving some useful information. Not surprisingly, the pediatric docs are called in from upstairs - they come in to review her history and symptoms with us (by this time Dan has joined us) and they too are baffled. They go off to review the results of the tests with some collegues - away from the parents so we cannot see that they are just as confused as we are - and Praise the Lord! A specialist in childhood diseases ( I am sure he had a loftier title, but it slips the mind now) was in the lunch room and says it is typical Kawasaki's Disease, no question about it. The pediatric docs return triumphant with a diagnosis and into the hospital proper for treatment we go.

The beginning...

Sunday, January 23, 2011. Mid afternoon Deborah was walking around holding her head complaining that it hurt. I ran my hand across her head and neck; she felt a little warm, so I gave her some acetaminophen for the headache and to help with the fever.

I urged her to rest and take a nap, not an unusual occurrence for her even though she is six years old, and she did. She did not feel much better, but her head did not seem to be hurting her anymore, so I was anticipating another round with cold and flu season and began wondering when the next child would start feeling ill and who it would be?

It was our family night, when everyone makes it a point to be home and spend some time together, even if it is only over a meal - a new tradition for us. Deborah did not really eat much, but we weren't sure if it was not feeling well or the indifferent meal (an attempt at pizza soup went wrong).

Monday arrived and Deborah is still not feeling well; more of a fever, not interested in eating or drinking much, and just generally tired. She will play for a little while, but looses interest after maybe 15-20 minutes, and is content to sit and watch the others. With no other symptoms to go on, I continued with the acetaminophen to try to bring the fever down. Rx? Lots of rest, try to get her to eat a little, and regular doses of fever reducer. Her evening dose was due right as Dan came home from work, about six o'clock, and I was chatting with him about our day as I gave her the meds. She does not like the taste anyway, but this time it did not settle well! She said, "Excuse me,"ran to the bathroom and threw up. Poor sweetie! Rather than try to get her to try again, we just set her up with a pallet outside the bathroom door - she was not interested in going anywhere else - and kept an eye on her. She threw up a couple more times that night and then it seemed as if we were ready to be on the mend. I mean, it was the second day of the fever, throwing up had been done, so what else was there besides rest and recovery? Apparently, quite a lot.

Tuesday morning, hoping we are on the mend, I encourage her to take a shower hoping that will help her feel better. Works for me most of the time. :) After her shower, she mentions that she noticed "spots". Really?! New symptom: tiny spots all over her torso. Not chicken pox; no blisters. More of a dry rash. Nothing on her arms, legs, or face although she is "itchy" and she is rubbing behind her ears (no rash there?) And still with the fever. We begin the process of actually taking her temp. so I have a better of how warm she is getting rather than my time tested "nope you are normal, a little warm, pretty warm, hot, and oh my goodness!" All readings Tuesday are over 101 degrees farenheit. At this point we are a little worried because the symptoms do not seem to match anything we have dealt with before, and with 7 kids we have seen a lot. So, we continue with the Rx of rest, at least trying to get her to drink a little because she still is not interested in eating, and fever meds. By this time we are using ibuprophen and acetaminophen together to try to get that fever down, but with no success. Before bed, we do a bath with Aveno soothing bath wash to try and calm the inflammation.

Wednesday: fever is still hanging in, without regard to the fever reducers we are getting into her. Rash is getting thicker, spreading over more of her torso and back and still itchy. So, we add benedryl to the mix to try and ease her discomfort. She is still tired, but not lethargic; still has some energy to work with. But the combination of symptoms is beginning to give Dan and I some serious concern; what on earth could this be?! Even after a google search of childhood illnesses with a fever and a rash yields no answers; her symptoms simply do not match up. We decide to give it one more night; if she is not better in the morning, off to the doctor we go!