The PICC line….is out! It was removed on May 27th. Taylor absolutely floored the doctors at her last visit. They backed her IV steroids off from twice weekly down to once. After the Dr.’s left the room, Nurse Melanie comes tearing into the room exclaiming “Once a week, are you kidding me? You don’t understand, it just doesn’t ever happen this quick!” And all we could do is smile, and I thought to myself…it sure does for my Taylor. It doesn’t get any sweeter!
So now, Nurse Collette comes once a week to give Taylor her dose, the only need for an in home nurse before was to change the PICC line dressing. First step is to put on the numbing cream, wait, start IV and then sit and watch a movie for 45 minutes to an hour…all the while Taylor tells her the random events of her week, all things relative, it is quite an enjoyable time. Sometimes I think we miss out on these important conversations in our loved ones lives when we don’t take the time out of our purposefully crazy busy schedules… IV comes out…and on with our evening. No more showering with a covered arm, no more tears when swimming comes into a conversation… speaking of swimming…
Taylor has been granted a wish from the Make-a-Wish foundation! The same night that the PICC line came out, two “Wish Makers” came to visit. I had referred Taylor after the extended stay at Children’s in Chicago…That was a tough phone call to make, but I was so excited to know, that Taylor could have something special of her own, for everything this little girl has been through. We are just blown away by their generosity! They came equipped for the visit with balloons and gifts for her…Taylor did not decide what her wish would be until the next morning…she hopped out of bed and declared, “Mom, I know what my wish is…I want a swimming pool!” and she has never wavered since. This wish is especially special, because we didn’t tell anyone she would be granted one and Shawn and I didn’t make any suggestions for her, we wanted her to dig down deep, dream big, and figure out what she really, really wanted.
The project is off and running, the Doctors have approved the wish, we’re in the process of getting the permits…and then they’ll get started! They want to get the project going as soon as possible so that she will have part of the summer yet to enjoy it. It will be a 24’ round above ground pool and will include a heater, chemicals for the first season, the filter and vacuum, solar cover, and winter cover. I just can’t believe it!
More Updates… They did more testing on her immune system during the last visit, they had run all of these tests in her first visit, but wanted to make sure the results weren’t being skewed by the rampant staph infection in her leg. They tested her Igg levels this last visit (and I apologize to any of my nursing friends and relatives, I hope I don’t slaughter the terminology too much here, I’ve understood most everything up until now, but I’m still struggling to wrap my head around this one). There are 4 tiers of igg in our blood, her total levels are at a 450, the low end of the acceptable range is 600. Here’s a definition for you: Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections. Well hers are low, still in a good level that she has response to infection, just not enough for their liking, she is more prone to infections. As she is weaned off the immune suppressing drugs, the last thing she needs is another infection coming in and stimulating the response that started this whole disease rollercoaster.
She has now started an IVIG treatment…they take these specific antibodies out of donated plasma, and IV them into her. Her first infusion was on Monday…a 7 hour process. She did awesome, taking everything in stride, they pre-medicate with Benadryl and Tylenol along with her IV steroids, just to make sure there isn’t a reaction to the IVIG. Not sure how long she will have this done, they will plan at first for one time per month and test the levels each time to only do it for as long as needed.
The thing that I don’t understand is how they are giving her the IVIG and not stimulating her immune system…because remember all of the immune suppressing drugs that she is on…so we’re tricking her immune system not to attack her with the prednisone and methotrexate, but now trying to build her antibodies with the IVIG, and somehow the two do not contradict each other…that’s what I don’t get yet, but I’m fully trusting…she’s doing great.
She can now pull her head completely off the ground and get a shoulder up like she’s trying to do a sit up, pretty pretty awesome!
Sorry this is a lengthy one…but lots has been going on the last month.
Walk for Taylor… Taylor’s incredible teacher, Mrs. Wackwitz, coordinated a fundraiser for CureJM. She wanted to do something for Taylor, to give her and her classmates a memory of their year together, and I’m sure the walk exceeded her expectations! The 4K and 5K classes walked a large block around the schools in honor of Taylor. Most of them wore blue, the color for CureJM, a lot of Parents came out to join us…there was a second grade class that raised money as well because they were so touched by her story. A third grade class came over in the morning and gave $171! The teacher had told them that she would match whatever they raised! From what I had heard, several students got together and had a lemonade stand the weekend before for the Memorial Day parade, and raised $12! CureJM donated rubber blue bracelets that say “CureJM” to every participant. And all together “Walk for Taylor” raised over $2,080 for CureJM, which funds programs for research and support for families of Juvenile Dermatomyositis. The "Thank You's" may sound like a broken record, but we cannot express it enough! What a memory for Taylor… Thank you so much!
Thursday, June 17, 2010
Tuesday, May 18, 2010
Breathe and Run...
I had another post written…I decided not to put it on the website, the situation is a lot sweeter after I am regenerated with some sleep and give it a few days to keep things in perspective. What an emotional rollercoaster we are on, or maybe just me ;) We were in the emergency room just a week and a half ago on a Sunday night, actually it was Mother’s Day night…Taylor spiked a fever late in the afternoon with a phlegmy cough and cold…long story short, she needed fluids, she got dehydrated and the ER doctors at Children’s gave her a stress dose of steroids as well. On the drive up she was completely lethargic, awake, but just barely and very uncomfortable. You could literally watch the life come back into her body so quickly over the course of our six hour stay. We caught up on the Sunday night sitcoms and colored and read a bunch. She didn’t fall asleep at all. Chest X-rays were clear, inflammation markers were in check – which is awesome, but infection markers were up a little, but nothing more than suggesting it was an upper respiratory infection… we got looks from the Dr.’s and nurses as we usually do, at our casual approach to being in an ER, they won’t say anything, but we just try to be as happy as we can… there is no point in being otherwise. We left that night at 1 AM, and you guys, she walked out of there like we were leaving the mall… saying good-bye to all of the nurses, and smiling because she felt so good! I just can’t boast enough about this little girl’s outlook! She’s just amazing!
The greatest Mother’s Day gift I could ever ask for (besides a cure) – Taylor looked at me shortly after they put us in the room and said “Mom – you’re the best Mom in the whole world…because you take me to the doctor when I need to go, so that I can feel better.”
There was an anonymous donation left on the Firstgiving website for $100 – and to that person, I want to say thank you from the bottom of our hearts!!! We are so, so touched and blessed and we just hope that we are able to give back and somehow enhance someone else’s life just the same as you have!
The running program is coming along! It feels so good to be back on the treadmill. This weekend was the Anne Hope Run/Walk at the Milwaukee zoo…I ran the 5K with the rest of the “Farmer’s Fighting Back” group. Our friends lost their father/uncle several years back to Melanoma, and have formed this amazing group (over 70 people) that participate and raise money every year for this charity (this year topped $5K just from them alone!) I was so grateful the Waldron’s invited me along…it was rewarding more than I can explain and it gave me a taste of what I want to accomplish for the Cure JM Foundation. While I didn’t run like the wind…I finished the 3.1 miles without stopping and beat my current pace for that distance by 4 minutes…that was quite an accomplishment, for me at least.
I follow another post that is linked on this page of Mielle’s mom…Mielle is being treated by Dr. Pachman as well. Her mom, Suzy, also trains and runs to raise money for Cure JM…and I hope she doesn’t mind me stealing this clip from her blog… it’s the response of another JDM mom in a discussion on anxiety…I look to her more than she knows for strength…
"Of course. It is so damn hard. The not knowing, the anticipation, the hope, the not wanting to go into despair, not wanting to be TOO hopeful either because falling off the "Hope Wagon" is awful. It is hard to find any place to rest. I think the Buddhists want us to find that middle ground where we hold suffering and joy as equal. But I am not very evolved.breathe and run, I guess that's the best we can do for now."
Wow. Wow. She really, really nailed it. It certainly is hard to find any place to rest in all this. I am afraid of being too hopeful, and simultaneously afraid of falling into despair. Clearly, I am also not very evolved...
But I continue to breathe and run, breathe and run, breathe and run....
Thank you Suzy…if you read this…you nailed it as well. On every run I think of the finish line, and seeing Taylor waiting…I still see her as the healthy little girl she was six months ago, and I too just breathe and run, and breathe and run…
The greatest Mother’s Day gift I could ever ask for (besides a cure) – Taylor looked at me shortly after they put us in the room and said “Mom – you’re the best Mom in the whole world…because you take me to the doctor when I need to go, so that I can feel better.”
There was an anonymous donation left on the Firstgiving website for $100 – and to that person, I want to say thank you from the bottom of our hearts!!! We are so, so touched and blessed and we just hope that we are able to give back and somehow enhance someone else’s life just the same as you have!
The running program is coming along! It feels so good to be back on the treadmill. This weekend was the Anne Hope Run/Walk at the Milwaukee zoo…I ran the 5K with the rest of the “Farmer’s Fighting Back” group. Our friends lost their father/uncle several years back to Melanoma, and have formed this amazing group (over 70 people) that participate and raise money every year for this charity (this year topped $5K just from them alone!) I was so grateful the Waldron’s invited me along…it was rewarding more than I can explain and it gave me a taste of what I want to accomplish for the Cure JM Foundation. While I didn’t run like the wind…I finished the 3.1 miles without stopping and beat my current pace for that distance by 4 minutes…that was quite an accomplishment, for me at least.
I follow another post that is linked on this page of Mielle’s mom…Mielle is being treated by Dr. Pachman as well. Her mom, Suzy, also trains and runs to raise money for Cure JM…and I hope she doesn’t mind me stealing this clip from her blog… it’s the response of another JDM mom in a discussion on anxiety…I look to her more than she knows for strength…
"Of course. It is so damn hard. The not knowing, the anticipation, the hope, the not wanting to go into despair, not wanting to be TOO hopeful either because falling off the "Hope Wagon" is awful. It is hard to find any place to rest. I think the Buddhists want us to find that middle ground where we hold suffering and joy as equal. But I am not very evolved.breathe and run, I guess that's the best we can do for now."
Wow. Wow. She really, really nailed it. It certainly is hard to find any place to rest in all this. I am afraid of being too hopeful, and simultaneously afraid of falling into despair. Clearly, I am also not very evolved...
But I continue to breathe and run, breathe and run, breathe and run....
Thank you Suzy…if you read this…you nailed it as well. On every run I think of the finish line, and seeing Taylor waiting…I still see her as the healthy little girl she was six months ago, and I too just breathe and run, and breathe and run…
Thursday, April 15, 2010
Still grinding along...
I have to apologize for not getting an update on here sooner…it’s probably for your own good. Taylor has been doing great, but my attitude has not been, so I just couldn’t bring myself to posting updates half-heartedly until I figured out what my funk was about…and I did…I’ll get into that later. So here are the updates, sorry this is so long...
1. Lab work - We were down for a long visit with Dr. Curran and Dr. Pachman on March 31st…she was put thru the whole gamut of blood tests and lab work. The great part about this visit is that there was absolutely no sign left of the staph infection in her body! Her white blood cell counts were the lowest as they’ve ever been, and what was even more encouraging is that her CK (Creatine Kinase) was finally in the lower end of its range. The CK is an enzyme that is first elevated after a heart attack and is also used to detect muscle damage and trauma. The normal range for Taylor should be around 49-149…when Taylor was admitted to Children’s in December her level was just over 4,200; that’s not a typo… her muscles were literally reflecting the trauma experienced of a compound fracture or severe car accident. All from her immune system attacking her blood vessels in her muscle and skin. When Dr. Curran told me it was 57, with a huge smile on her face, it took every part of me not to break down crying with joy. There is a big difference between believing that everything will be ok, and knowing that everything will be ok. Hearing the 57 was almost surreal! Again, the disclaimer is that blood levels are just the tip of the iceberg, but to me it reflects the momentum and direction Taylor is headed.
2. Muscle and Skin… The therapists did a complete screening using a range of motion and strength test that was written specifically for patients like Taylor so there is a gauge for improvements (because you can’t just rely on lab work to determine activity levels of the disease) Taylor scored a 32 out of a possible 52. There were things that she did in this test, that I didn’t even realize she could… it was great. But the biggest concern is that when she is lying down, she is not able to lift her head up on her own…and we’ve known this. Her therapist in WI works on it every visit. They say it’s going to be the last area to gain strength. After seeing this, the Rheumatologists agreed that “we’re just not there yet.” So after being on a complete high about the lab work, the rest of the visit was more hard to swallow. They are concerned yet about the activity in her skin. She has “pitting” referring to the red indentions next to her eyelids, and blotchy skin rashes on her cheeks…leading them to believe that it’s not time yet to back off, but to be more aggressive. That PICC line they had us administer anti-biotic for the staph infection is now being used to give her the steroid intravenously, what had been planned 3 times a week, and we are now giving her methotrexate shot thru that as well. (they doubled the dose of the shot, wasn’t aggressive enough).
3. Update since then… She had two stitches about a week ago that were getting infected, two of the “dissolvable” stitches didn’t dissolve, so after a visit to Chicago, she was back on antibiotic and backed off the IV steroid plan, if she is being challenged by the infection, they don’t want to challenge her further by suppressing her immune system aggressively. So she’s getting 2 rounds a week now, we go back on the 21st, if they are seeing enough improvement still, they’ll keep her on 2…fingers crossed. Incisions look good now, almost healed.
4. The stress released… At that visit on the 31st, they brought up putting a medi-port in… if she were going to be getting medicine thru an IV that often for a long period, the PICC would not suffice…as it is, they only like to keep them in for a couple of months. The port is implanted under the skin, just below the clavicle, for direct access and very little maintenance required, this is how chemo patients receive treatment… please don’t get me wrong, if it were necessary, of course I wouldn’t buck it…but when she’s been progressing so well, to hear they want to schedule putting one in, just floors your heart into your stomach. I called the nurse after a week to ask if this could be averted, and she said it was the best thing for her, but she would talk to the Dr. She called me a few hours later and I could just hear the excitement in her voice; Dr.’s think with her pace of progress, it may not be necessary…that’s all I needed to hear…I realized what the grey cloud has been over me and Shawn…maybe it was having direct access to my daughter’s heart that scared us, maybe it was the scar we would see on her chest the rest of her life reminding us of this awful ordeal for her; I think it was the thought of how serious a situation she is still in, that reminded us we weren’t in the clear yet. Hearing that “may not be necessary” ranks right up there with the “57” on speechless moments.
5. Website…you’ll notice the link for the “First Giving” donations page… I’m going to be a runner, and I say that in “future” tense because I have gotten seriously out of shape in the past few months…but there is nothing more motivating that watching a loved one struggle to walk or function. You realize how selfish you’ve become in taking your health for granted…Taylor has fought from using her upper-body to have to pull herself up the stairs, just one at a time, to now doing an entire flight of stairs one foot after the other…and getting to the top and just being SO happy that she can do it again…that is the definition of determination, and much more than any 6 year old should ever have to struggle thru… So I’ve signed up for the Chicago Marathon on October 10th, but because this isn’t an official fundraiser for the CUREJM foundation, we (my sister Lisa and I) are going to run the half marathon in September also, that one is a fundraiser for the organization. Volunteers run CureJM…since the disease is so rare, most of the funds for research come from private fundraising efforts. The video on this page gives you an idea of just how active and incredible these people are!! Any money at all, if only $5, is greatly appreciated and will go directly towards the CureJM initiatives for research… Thank you so, so much for your support!!!!
1. Lab work - We were down for a long visit with Dr. Curran and Dr. Pachman on March 31st…she was put thru the whole gamut of blood tests and lab work. The great part about this visit is that there was absolutely no sign left of the staph infection in her body! Her white blood cell counts were the lowest as they’ve ever been, and what was even more encouraging is that her CK (Creatine Kinase) was finally in the lower end of its range. The CK is an enzyme that is first elevated after a heart attack and is also used to detect muscle damage and trauma. The normal range for Taylor should be around 49-149…when Taylor was admitted to Children’s in December her level was just over 4,200; that’s not a typo… her muscles were literally reflecting the trauma experienced of a compound fracture or severe car accident. All from her immune system attacking her blood vessels in her muscle and skin. When Dr. Curran told me it was 57, with a huge smile on her face, it took every part of me not to break down crying with joy. There is a big difference between believing that everything will be ok, and knowing that everything will be ok. Hearing the 57 was almost surreal! Again, the disclaimer is that blood levels are just the tip of the iceberg, but to me it reflects the momentum and direction Taylor is headed.
2. Muscle and Skin… The therapists did a complete screening using a range of motion and strength test that was written specifically for patients like Taylor so there is a gauge for improvements (because you can’t just rely on lab work to determine activity levels of the disease) Taylor scored a 32 out of a possible 52. There were things that she did in this test, that I didn’t even realize she could… it was great. But the biggest concern is that when she is lying down, she is not able to lift her head up on her own…and we’ve known this. Her therapist in WI works on it every visit. They say it’s going to be the last area to gain strength. After seeing this, the Rheumatologists agreed that “we’re just not there yet.” So after being on a complete high about the lab work, the rest of the visit was more hard to swallow. They are concerned yet about the activity in her skin. She has “pitting” referring to the red indentions next to her eyelids, and blotchy skin rashes on her cheeks…leading them to believe that it’s not time yet to back off, but to be more aggressive. That PICC line they had us administer anti-biotic for the staph infection is now being used to give her the steroid intravenously, what had been planned 3 times a week, and we are now giving her methotrexate shot thru that as well. (they doubled the dose of the shot, wasn’t aggressive enough).
3. Update since then… She had two stitches about a week ago that were getting infected, two of the “dissolvable” stitches didn’t dissolve, so after a visit to Chicago, she was back on antibiotic and backed off the IV steroid plan, if she is being challenged by the infection, they don’t want to challenge her further by suppressing her immune system aggressively. So she’s getting 2 rounds a week now, we go back on the 21st, if they are seeing enough improvement still, they’ll keep her on 2…fingers crossed. Incisions look good now, almost healed.
4. The stress released… At that visit on the 31st, they brought up putting a medi-port in… if she were going to be getting medicine thru an IV that often for a long period, the PICC would not suffice…as it is, they only like to keep them in for a couple of months. The port is implanted under the skin, just below the clavicle, for direct access and very little maintenance required, this is how chemo patients receive treatment… please don’t get me wrong, if it were necessary, of course I wouldn’t buck it…but when she’s been progressing so well, to hear they want to schedule putting one in, just floors your heart into your stomach. I called the nurse after a week to ask if this could be averted, and she said it was the best thing for her, but she would talk to the Dr. She called me a few hours later and I could just hear the excitement in her voice; Dr.’s think with her pace of progress, it may not be necessary…that’s all I needed to hear…I realized what the grey cloud has been over me and Shawn…maybe it was having direct access to my daughter’s heart that scared us, maybe it was the scar we would see on her chest the rest of her life reminding us of this awful ordeal for her; I think it was the thought of how serious a situation she is still in, that reminded us we weren’t in the clear yet. Hearing that “may not be necessary” ranks right up there with the “57” on speechless moments.
5. Website…you’ll notice the link for the “First Giving” donations page… I’m going to be a runner, and I say that in “future” tense because I have gotten seriously out of shape in the past few months…but there is nothing more motivating that watching a loved one struggle to walk or function. You realize how selfish you’ve become in taking your health for granted…Taylor has fought from using her upper-body to have to pull herself up the stairs, just one at a time, to now doing an entire flight of stairs one foot after the other…and getting to the top and just being SO happy that she can do it again…that is the definition of determination, and much more than any 6 year old should ever have to struggle thru… So I’ve signed up for the Chicago Marathon on October 10th, but because this isn’t an official fundraiser for the CUREJM foundation, we (my sister Lisa and I) are going to run the half marathon in September also, that one is a fundraiser for the organization. Volunteers run CureJM…since the disease is so rare, most of the funds for research come from private fundraising efforts. The video on this page gives you an idea of just how active and incredible these people are!! Any money at all, if only $5, is greatly appreciated and will go directly towards the CureJM initiatives for research… Thank you so, so much for your support!!!!
Wednesday, March 24, 2010
You would never know...
Taylor is back in full action with plenty of energy! You would never know what she has been through this month just by the looks of her. Don’t get me wrong, she’s not at 100%, but she is sure at the 75% that she was before the staph infection took over her mobility.
She came home from the hospital on Thursday March 11th…The following Tuesday, she had her first physical therapy, that night she tried walking without her walker… and hasn’t used it since! Her therapist was so happy, I think she expected was expecting to have regression from past progress, and that didn’t happen at all. Taylor didn’t lose any range of motion in her hip or knee, and actually maintained all of her trunk (core) strength…this is a positive sign that Taylor is getting a hold of her disease, and not the other way around. You should see how strong her upper body is getting!
When she was hospitalized, the Dr.’s showed me the MRI of her leg, they showed me what healthy muscle tissue is supposed to look like, and there wasn’t a strand of it in these images…I asked “Wow! Is all that inflammation from the infection?” and the answer was quickly “no.” All of her muscles are still inflamed from the initial flare of the dermatomyositis last fall. What a slap of reality in the face…all of the progress that she’s made. The specialist told me that’s why they always figure two years minimum of drug therapy…nice, Milwaukee Children’s told us a year, that was a hard lump to swallow.
I digress… the markers in her blood levels are telling us that her body is no longer attacking her, but there is a lot of progress to be made yet on rebuilding the damaged tissue, but we’ve turned the corner… and that is the awesome part!!! For those of you that see her, but not as often as we do, don’t be sad…she is doing incredible! This is going to be a long process, so please don’t be let down, or let her see it in your face – compared to a few short months ago when she didn’t want to walk at all, and couldn’t stay awake later than 5 p.m. she is truly on her way to full strength and health!
That Friday we were down to see the surgeon for a follow up appointment…maybe it’s just me, but I think that surgeon’s beat to a different drum than most Dr.’s. I guess I had been expecting a little more out of that appointment; we sat in the waiting room for 10X the time we saw him. I guess you don’t need people skills because most of your encounters are when your patients are sleeping…”she’s fine” and “looks great” were his comments. Ok, guess that’s good enough for me. The incisions do look great in my mind; they never wept and aren’t sore. So we'll be back down there next month...for him to say the same.
This past Monday she went back to school…we were thinking about ½ days to start, but after she went to Sunday school the day before, and climbed 2 flights of stairs that day as well… she was ready to go! In my opinion, she feels her healthiest when in her “normal” schedule and routine…Taylor doesn’t like special treatment; her biggest motivation for wanting to walk was going back to school without her walker – and she succeeded!
Current – she’s still getting the anti-biotic 3X’s daily thru the PICC line, but the countdown is on…one week from today, we go down to Chicago, and they’ll let us know if she’s in the clear…and what the next course of action will be. Shawn and I have decided to move her treatment down to the Chicago Rheumatology Clinic...can’t wait to hear what they have to say next Wednesday!
She came home from the hospital on Thursday March 11th…The following Tuesday, she had her first physical therapy, that night she tried walking without her walker… and hasn’t used it since! Her therapist was so happy, I think she expected was expecting to have regression from past progress, and that didn’t happen at all. Taylor didn’t lose any range of motion in her hip or knee, and actually maintained all of her trunk (core) strength…this is a positive sign that Taylor is getting a hold of her disease, and not the other way around. You should see how strong her upper body is getting!
When she was hospitalized, the Dr.’s showed me the MRI of her leg, they showed me what healthy muscle tissue is supposed to look like, and there wasn’t a strand of it in these images…I asked “Wow! Is all that inflammation from the infection?” and the answer was quickly “no.” All of her muscles are still inflamed from the initial flare of the dermatomyositis last fall. What a slap of reality in the face…all of the progress that she’s made. The specialist told me that’s why they always figure two years minimum of drug therapy…nice, Milwaukee Children’s told us a year, that was a hard lump to swallow.
I digress… the markers in her blood levels are telling us that her body is no longer attacking her, but there is a lot of progress to be made yet on rebuilding the damaged tissue, but we’ve turned the corner… and that is the awesome part!!! For those of you that see her, but not as often as we do, don’t be sad…she is doing incredible! This is going to be a long process, so please don’t be let down, or let her see it in your face – compared to a few short months ago when she didn’t want to walk at all, and couldn’t stay awake later than 5 p.m. she is truly on her way to full strength and health!
That Friday we were down to see the surgeon for a follow up appointment…maybe it’s just me, but I think that surgeon’s beat to a different drum than most Dr.’s. I guess I had been expecting a little more out of that appointment; we sat in the waiting room for 10X the time we saw him. I guess you don’t need people skills because most of your encounters are when your patients are sleeping…”she’s fine” and “looks great” were his comments. Ok, guess that’s good enough for me. The incisions do look great in my mind; they never wept and aren’t sore. So we'll be back down there next month...for him to say the same.
This past Monday she went back to school…we were thinking about ½ days to start, but after she went to Sunday school the day before, and climbed 2 flights of stairs that day as well… she was ready to go! In my opinion, she feels her healthiest when in her “normal” schedule and routine…Taylor doesn’t like special treatment; her biggest motivation for wanting to walk was going back to school without her walker – and she succeeded!
Current – she’s still getting the anti-biotic 3X’s daily thru the PICC line, but the countdown is on…one week from today, we go down to Chicago, and they’ll let us know if she’s in the clear…and what the next course of action will be. Shawn and I have decided to move her treatment down to the Chicago Rheumatology Clinic...can’t wait to hear what they have to say next Wednesday!
Saturday, March 13, 2010
The good and the bad of it...
There's a lot of reason's why I knew I needed to get this site set up for Taylor... it's been 13 weeks since she was diagnosed, and so much has happened during that time. This is going to be my attempt at documenting Taylor's journey, helping her family and friends understand more about the disease and it's impact on Taylor, and to give Taylor something to look back on when she's older...and be proud of the struggles that she's pushed through, all the while bringing smiles and joy to everyone that meets her!
It's been exactly 2 weeks now since Taylor had the first symptoms of the staph infection that would keep her in the hospital for another 8 nights...She woke up that Saturday morning with a sore leg, but continued on about her day, in fact the most energetic I'd seen her in a long time. We even went for a walk outside, it was pretty emotional...but then by Sunday morning, she couldn't put any weight on her right leg. Off to the ER we went, but they sent us home with only lab work done, and a quick diagnosis of "transient synovitis," an inflammation in her hip. By that evening, it was very clear that was a mis-diagnosis.
After waiting for a follow up call from the Rhumetology clinic that never came, I called and asked if we could schedule the suggested MRI..."Oh, it's a good thing you called," the nurse says..."I hadn't heard anything about it." EXCUSE ME??? So I wait for a return call from the nurse, upon which I am told that the Dr. would like to see Taylor in the clinic before scheduling it...he only takes appointments in clinic on Wednesday... for those of you that have ever had a child in pain or that is sick, you know that 2 minutes is too long, much less waiting another two days.
After seeing how miserable she was on Monday afternoon and into the evening, I went right to work on Tuesday morning...I knew that there was a specialist in Chicago that only sees patients with Juvenile Dermatomyositis. I gave them Taylor's history, including the past few days events, and they agreed to see her the next day!!! Dr. Pachman's office sees families that fly in from all over the country, just for her treatment. An instant calming, but also scary feeling came over me. We knew that we were in right place for whatever this was that was attacking her leg, but I felt like her disease had taken a turn, and using the "Dr. Pachman" card, was something that I was hoping we were never going to need to do.
The Good....
All of Taylor's lab work that the Drs. have been watching as markers of her disease activity, including her liver and muscle enzymes...in time I will get into more detail Taylor's history, all came in within the NORMAL ranges... the first time since her diagnosis! I've been reminded by several other JDM mom's and Drs. this is only the tip of the iceberg towards getting her disease activity under control... I just can't help but feel we need to celebrate the small victories along the way!
The Bad...
Because of the nature of JDM, she is taking several immuno-suppressive drugs to stop her immune system from attacking her...so when there is an infection, her body cannot express it as yours and mine can...so the staph infection in her leg basically exploded before they were ever able to diagnose. She never had a cut, or bruise, or entry for the infection, and we'll never know where it came from. She developed a large cavity of infected fluid between two of her leg muscles, that needed to be surgically drained. Her leg was so inflamed, it was almost double the size of her left. She is using a walker to get around right now, but there shouldn't be any residual damage from this infection...just extra PT, and scars that will fade with time. Right now I'm giving her antibiotic 3 times a day thru a PICC line (basically a semi-permanent IV in her arm) for 3 weeks, to make sure the bug is gone. This thing just baffled the Drs. They couldn't believe that it developed where it did, and in the quantity that it did... poor little thing, she was in so much pain.
It won't come as a surprise to you all how brave she was in the hospital... so many nurses told her that there older son's and husbands couldn't have handled it all as well as she did. And what also won't be a shocker is how many friends she made while we were in Chicago... "She's infectious" one of the Drs. told me, she had the nurses giggling. Taylor decided that she was going to walk as far as she could, using her walker, on the day that we left...we came around to the nurses station, and you could see a few glossy eyes, and they all started to cheer...She smiled so big... just amazing, I am just in awe of this little girl.
This is hopefully the last time I'll be writing about a trip home from the hospital...
It's been exactly 2 weeks now since Taylor had the first symptoms of the staph infection that would keep her in the hospital for another 8 nights...She woke up that Saturday morning with a sore leg, but continued on about her day, in fact the most energetic I'd seen her in a long time. We even went for a walk outside, it was pretty emotional...but then by Sunday morning, she couldn't put any weight on her right leg. Off to the ER we went, but they sent us home with only lab work done, and a quick diagnosis of "transient synovitis," an inflammation in her hip. By that evening, it was very clear that was a mis-diagnosis.
After waiting for a follow up call from the Rhumetology clinic that never came, I called and asked if we could schedule the suggested MRI..."Oh, it's a good thing you called," the nurse says..."I hadn't heard anything about it." EXCUSE ME??? So I wait for a return call from the nurse, upon which I am told that the Dr. would like to see Taylor in the clinic before scheduling it...he only takes appointments in clinic on Wednesday... for those of you that have ever had a child in pain or that is sick, you know that 2 minutes is too long, much less waiting another two days.
After seeing how miserable she was on Monday afternoon and into the evening, I went right to work on Tuesday morning...I knew that there was a specialist in Chicago that only sees patients with Juvenile Dermatomyositis. I gave them Taylor's history, including the past few days events, and they agreed to see her the next day!!! Dr. Pachman's office sees families that fly in from all over the country, just for her treatment. An instant calming, but also scary feeling came over me. We knew that we were in right place for whatever this was that was attacking her leg, but I felt like her disease had taken a turn, and using the "Dr. Pachman" card, was something that I was hoping we were never going to need to do.
The Good....
All of Taylor's lab work that the Drs. have been watching as markers of her disease activity, including her liver and muscle enzymes...in time I will get into more detail Taylor's history, all came in within the NORMAL ranges... the first time since her diagnosis! I've been reminded by several other JDM mom's and Drs. this is only the tip of the iceberg towards getting her disease activity under control... I just can't help but feel we need to celebrate the small victories along the way!
The Bad...
Because of the nature of JDM, she is taking several immuno-suppressive drugs to stop her immune system from attacking her...so when there is an infection, her body cannot express it as yours and mine can...so the staph infection in her leg basically exploded before they were ever able to diagnose. She never had a cut, or bruise, or entry for the infection, and we'll never know where it came from. She developed a large cavity of infected fluid between two of her leg muscles, that needed to be surgically drained. Her leg was so inflamed, it was almost double the size of her left. She is using a walker to get around right now, but there shouldn't be any residual damage from this infection...just extra PT, and scars that will fade with time. Right now I'm giving her antibiotic 3 times a day thru a PICC line (basically a semi-permanent IV in her arm) for 3 weeks, to make sure the bug is gone. This thing just baffled the Drs. They couldn't believe that it developed where it did, and in the quantity that it did... poor little thing, she was in so much pain.
It won't come as a surprise to you all how brave she was in the hospital... so many nurses told her that there older son's and husbands couldn't have handled it all as well as she did. And what also won't be a shocker is how many friends she made while we were in Chicago... "She's infectious" one of the Drs. told me, she had the nurses giggling. Taylor decided that she was going to walk as far as she could, using her walker, on the day that we left...we came around to the nurses station, and you could see a few glossy eyes, and they all started to cheer...She smiled so big... just amazing, I am just in awe of this little girl.
This is hopefully the last time I'll be writing about a trip home from the hospital...
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