Replies

GOOD NEWS UPDATE! --2/19 9:30am

Amanda got her liver enzymes tested again today and the results were OUTSTANDING!!! Her ALT level was 102 on Tuesday (normal is about 7-56), and today her ALT was at 52! We don't know why her liver was showing what it did on Tuesday, but it looks good now! She will be staying with the generic pills, and we will be seeing her ID doctor on Tuesday for our first follow-up!

Thank you so much for everyone's prayers! Praise God for the good outcome today! We've done nothing different as far as food or meds, so I'm giving the glory to God for this positive news! I know the prayer warriors here at FR are a powerful group, and I am comforted to know you are all in our corner! :)

Hopefully I will not have another update until Tuesday when we go see the doctor! So from here I guess "no news is good news"! :) She is far from beating this infection (the meds are probably JUST starting to work now - it takes a while to "catch up" to the infection from what I understand). However, knowing what we are dealing with and having a very attentive and caring doctor is a tremendous blessing based upon the treatment we were receiving before!

Thanks again so much for all the prayers, advice and support. I wish I could reply to everyone's posts individually, perhaps tomorrow I can go through and reply a bit. There are things I'd love to respond to, but with this good news I think I'm going to try to just enjoy spending time with my girls today, and praising God for not having to take Amanda back to the hospital today!

Much love to all of you. May God bless you & yours abundantly!
~ LR

PS -- I realized last night at the pharmacy that I was confused about her medication. The pill form she has IS the generic covered by our insurance. The liquid/suspension is the brand-name they wouldn't cover because the pill is the "same medicine". It may take a little longer to get rid of the infection this way, but as long as she remains stable for now, the meds should "catch up" to the infection and she should start REALLY feeling better next week... This is a doozy of an infection to knock out - as I mentioned a while back she will have to take this medication for at least 6-9 months. Sorry for the confusion on that! :)

UPDATE - FEB. 23, 2010
[The following was copied and pasted from a note I wrote over on my FB account a few moments ago. - LR]

Well, we just got back from Amanda's appointment with her Infectious Disease doctor. Her blood work was good. She's getting "enough" of the meds into her system for now, and the mass seems to be dissipating slowly, but surely. Just as it's hard to see your own kids growing because you see them everyday, it's hard for me to tell just how much better her leg is. The inflammation in the surrounding tissues has gone away completely - except maybe some in the calf muscle itself right around the mass, but that is to be expected.

She is supposed to start trying to walk again as soon as she can, but she has to be careful regarding being on pain killers, and not overdoing it (not feeling when it hurts). The mass is actually poking through the muscle tissues in her calf, so we will be getting in touch with her orthopedic doctor (more on that below...). She also has to be careful not to walk awkwardly or she risks hurting her knee or hip. So for going to the mall, or the library we will still be using her wheelchair, graduating on to crutches when she gets better on them.

She doesn't have to see her doctor again till around October as long as everything is progressing smoothly. She will have monthly blood tests to check the level of the anti-fungal meds in her system, and to keep an eye on her liver. She is doing really good with her pain killers -- she doesn't take them unless it really starts to bother her, so we're not worried about her getting addicted to the codeine or anything which is good, and she can continue on those as needed -- probably switching to plain Ibuprofen for swelling in a couple weeks when the mass shrinks back to the underside of the muscles.

I mentioned above about her seeing an orthopedic doctor... Based upon the X-Rays they did to check for the infection in her lungs, and head she has been diagnosed with Scoliosis. It's not severe, but one can definitely see the curve on the x-ray very clearly. Since she can't stand up straight and bend over right now due to her calf, we will have to wait until she is able to walk again to see a Pediatric Orthopedic Specialist, and get the Scoliosis officially diagnosed, and figure out what needs to be done.

While it's more than a little anger-inducing that this was not noticed before, it gives us a lot of answers as to why her back hurts so often (her posture while drawing isn't helping -- making it a lot worse probably). We already knew she was "hyper-flexible" like me (meaning her ligaments are almost too loose and things move around alot and the nerves get "rubbed" by her vertebrae, another example - on our "pointer" fingers we can bend the tip "up", or backwards).

I don't know much about scoliosis although I think I remember my back doctor mentioning I have VERY slight scoliosis (less than Amanda's curvature for sure). So, that's something I'll need to learn more about now. Since she can't be seen right away we have a bit of time to find a good pediatric orthopedic specialist as well (even if we have to travel to Marshfield). [We might just call up the orthopedic doctor she saw in the hospital, or get a recommendation from him (he's older and has a very thick German accent which Amanda can't understand well (I have no problem understanding him) - a good doctor you can tell, but very serious and quiet -- Manda is sort of scared of him! LOL But then he did manipulate her leg a lot, and it was hurting really bad at the time, so she's probably just mad at him! :) ]

One thing I wanted to mention that was SO COOL, is that Marshfield Clinic is a pioneer in computerized medical records technology, and I can't tell you how cool it was that we were able to view all of her MRIs (frame by frame), XRays, and Ultrasounds right there in the office on her doctor's tablet that opens up into a laptop, too. He could show us frame by frame the mass in her leg, and her hip/buttock.

I don't know how many of you have seen the commercial in the Olympics about the "pen scanner" that looks like the Star Trek doctors' scanners, but we talked for a bit how they are hoping to replace the stethoscope with a hand-held ultrasound device. It's going to be a long time coming though because of politics with radiologists (who understandably don't want to lose their specialty, but I think would still be needed for sure anyway), and figuring out how to train the next generation of doctors to use the technology they are not trained to read the scans will also be a problem. (We had a really nice conversation with her doctor)

He also mentioned to us that her presentation isn't unheard of (subcutaneous mass), but that in all the cases he's personally seen or treated and read about the people all had clear pneumonia and/or skin lesions (or bone infection). So I guess it's "uncommon" although not REALLY rare - at least not around here. Four people besides Amanda were being treated in the Hospital for this while we were there, however all four (2 adults, 2 children) had it in the pneumonia form. One of our pharmacists was familiar with it, but never heard of it as a mass in the soft tissue - only the respiratory form.

Also, it wouldn't be odd if we find out some of the rest of us may have it -- just something we'll have to look for. She really doesn't go anywhere without at least one of her sisters, so we'll just have to watch them for a while. It can take from 3 months to 15(!) months to present itself in the body, and besides last April when we were all sick at once no-one has been sick. One case he had read about was a group of about 10 guys who went camping here in WI from down South where they don't have this fungus, and out of the group who were all tested after 2 got really sick with pneumonia, they discovered 7 or 8 of the guys had it, but several with no symptoms.

So, that's where we are... Taking things slowly, day by day. The doctor says we should mark down on the calendar the day she "can't find it" in her leg anymore (the one in her buttock is really hard to find already, but I think the doctor extracted almost half of it with the needle biopsy, so that one will heal a lot faster. The one in her calf is more of a solid mass, so it will take time to go away.

There is no telling how long until she is symptom-free at least, but at least 4-6 weeks, if not 4-5 months maybe (he hopes faster because it seems to be responding well to the meds already which is a good thing).

So, please continue to pray that Amanda will return to health from this infection - only 3% of patients have bad problems, but that's usually the ones with pneumonia-like infections. Hers is more uncommon, so it's hard to tell what will happen, really. She should be alright though.

Please also pray we will find good doctors as we move from one "medical system" to another. We are needing to find specialists along with regular doctors for everyone, and it would be nice to find good doctors right away that are also close-by at least once a week if not right here in town (most specialists have about 3 area clinics they see patients in - as well as patients at the regional hospitals).

I think we can finally start getting back to a somewhat normal atmosphere around here and relax a bit now which is a very good thing. It's so stressful when your child is sick. Of course, we have some longer more Chronic things to worry about now, but nothing that is life-threatening, so that is good. And, with medical advances and a brand new hospital close-by we are in good hands now I think.

Praise God for Amanda getting better so quickly, and for the doctors, nurses, and all the care she has been receiving! And thanks again to everyone for their prayers, good thoughts, support and love. It means so much to all of us.

Thanks for reading the updates, too. It helps to be able to write it all out and get it straight in my mind as to what's going on as well!

OH! I almost forgot! Samantha (our youngest) is having a problem with her tooth (a bad filling - so we are seeing a new dentist, too! It's the third filling among the girls that's fallen out! Ridiculous, IMHO!). She has an appointment on the 1st, but please pray for her to stay out of pain she is having occasionally right now.

Thanks again, and I pray everyone else is having a good week, too!

God bless you & yours,
LR