Definitely Thrush

Katie went to her doctor again today to get this latest issue diagnosed and it is Thrush. Most of her tongue is now white too, and she is still in a lot of pain whenever she tries to eat, but her doctor prescribed a new med, and we have already seen some results. With any luck, we caught this early enough that it won't spread.

Tomorrow, Katie has to travel back to Fletcher Allen for a follow-up, a blood test, and possibly more chemo depending on the results of the blood test.

A New Kind of Mouth Sore

We don't yet know what kind of sores these are on Katie's tongue and on the roof of her mouth, but they hurt and they developed very shortly after leaving the hospital so no doctors have seen them yet. It looks like Thrush to us, but since we have never encountered it before, we can't be sure. You can click each image for a larger, close-up version. I'll post an update when we find out what this is.

Our Plans Changed in an Instant

In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.

Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.

Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.

Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.

Infection Free

Katie's ear infections are officially gone. Apparently the Augmentin did what it was supposed to do and the pain that Katie was complaining about for the last couple of days before going back to the doctor for a follow-up was caused by the fluid that is still in her ears. The doctor prescribed a nasal spray to help drain Katie's Eustachian tubes and sent us on our way. To help keep the ear infections at bay, Katie is also taking 2400mg of Xylitol each day. Xylitol is a natural sugar-alcohol that comes in the form of gum, syrup, or candy and our doctor recommended giving it a try. We bought the candy from our local health food store and Katie has no problem gobbling it down. Although I just read that Xylitol needs be given in a dose of at least 8400mg to be effective. We will probably increase her special candy allowance now that she is infection free again and try to keep her that way.

School vacation starts this week, and Katie is looking forward to both down time and time for play. She took a 3 hour nap this afternoon and only woke up because I woke her up. I wasn't interested in her staying awake all night after sleeping too long in the middle of the day. Tomorrow, if the weather cooperates, the whole family is going skiing and riding at Burke Mountain. Hooray for vacation!

On The Road to Recovery

Katie hasn't had any follow-up appointments since her last visit to the hospital, but things appear to be getting better. She is no longer suffering from fevers at night, she claims that her ears are not bothering her, and the color is returning to her cheeks. We put her back in school this week, and although the first and second days back were rough with school directly followed by a nap, she finished out the week strong. She even got out to play on her snowshoes today with her other preschool pals and she appears no worse for her experience. It looks like she may be declared healthy at her follow-up visit next week.

Now, how long can we all stay healthy?

Update

Katie's fever dropped a little lower over night, to hover around 101. In the morning I spoke with her doctors and arranged for a follow-up. At her follow-up The doctor and I spoke about Katie's recurrent ear infections and decided to try Augmentin, and augmented dose of amoxicillin designed to stay in her system longer to kill off more bacteria.

From the doctor's office, we were transfered to the hospital for another blood count, blood culture, and another dose of Ceftriaxone. At the hospital we were told that the previous night's x-rays had just been read and that the doctor thought he saw a shadow of pneumonia. New x-rays were taken, and it was confirmed that there indeed was some pneumonia in her lungs. However, the Augmentin and the Ceftriaxone both fight pneumonia as well as ear infections so no change in her medications are necessary.

Port access was a breeze again, and Katie's blood counts were the pleasant surprise of the day. Her white blood cells climbed back up to 2.6 and her ANC climbed up over 1200. Her hemoglobin was still low (I don't have the number handy) and that concerns us since fever tends to kill off extra hemoglobin.

During our stay at the hospital, Katie's temperature began to rise again. She was given some Tylenol to help keep her comfortable and although she felt better, it certainly didn't keep her fever down. Katie was discharged with a fever of 103.7 and we headed home. By 9pm, her fever had risen to 104.9. Happily, that was its highest point. Her fever slowly dropped over night until it was once again hovering around 100 this morning.

She has spent most of today flopping back and forth between feeling sick and vomiting, and then feeling great and chattering and playing as if nothing were wrong. As I right this now, her temperature has started to climb a little, and she is ready for bed. I hope she gets a good night's sleep tonight so that her body can begin to recover from this round of illness.

Emergency Room Update

The doctor just came in to tell us what Katie's blood count is. Its low. Her white blood count is just 1.1 and her absolute neutrophil count is only 770. Her numbers have suffered a precipitous drop over the last four days. Considering an ANC of 500 will put her back in the hospital for days, we are a little worried about this. Also, given the number of illnesses floating around our house lately, a dropping ANC does not inspire hope of a healthy near future.

I'm also going to write down her basic number here so that we don't forget them...
ANC 770
WBC 1.1
HemoGlobin 8.1

So Much for Getting Well

That cough that we mentioned in our last post has progressed in to something that sounds croupy, the ear infections never did go away with that last dose of Amoxicillin,  and we are back in the hospital. This time, we are at North Country Hospital with a fever of 103.2. Katie is feeling awful, but dealing with it well as usual.

Port access went very smoothly. North Country doesn't stock the types of access needles that Fletcher Allen uses with Katie's port so access has historically been difficult here. However, at our last visit to Fletcher Allen we were given several access needles to keep with us in case Katie needed to have her port accessed again at North Country. The nurse used one of the Fletcher Allen needles today and accessed Katie's port with great ease. It made a real difference.

The plan for right now at least is to wait for the results of a blood count, wait for the Ceftriaxone to finishing dripping through her IV, get some medication for her recurrent ear infections and go back home. Hopefully, this will be just another routine visit to the hospital.