Tuesday, April 24, 2012

Question and quick follow up from before we left the hospital

Well, the iron counts came back for Emily and they did show that she is anemic.  I had to laugh a bit.  Of course, iron causes constipation.  Antibiotic use can cause a little problem called C-dyphicile that causes chronic diarreah.  Hey, we just fixed a problem!  I've been giving her probiotics because of the antibiotics.  Guess we can eliminate that now.  He wants her to drink or eat one citrus product a day, and increase her water and fruit intake.  It's so hard getting her to eat anything other than what she is stuck on.  They are supposed to call me when the results of the urine culture come back.  Also, this coming Monday we head back up by the hospital to go see their ENT.  We're hoping that this ENT will help along the process instead of making it more difficult. 

We are talking more seriously about the homeschooling, discussing what will be expected of them, how I suspect this is going to work.  I have sent in the papers already.  The kids have taken most of their placement tests.  They did about 90% of it over the weekend.  They wanted to take them to the hospital with us but I didn't want them to get lost.  Hopefully they will finish them this week and I can fax them off.  I know that it's going to be a lot of work, but it does sound like a lot of fun, too.  I think that we'll do really well.  It is a little scary, but we need to do it.    The biggest obstacle right now is waiting for people to be hired in at work so that I can drop my hours.  It figures that we have a bunch of people leave now when we've had the same people forever!

Has anyone reading used a home school program?   Here is my biggest worry-  I am starting my own online courses in about 2 weeks.  I will still have to work weekends.  Am I taking on too much?  I fully realize that I will be spending a LOT of time looking over their shoulders and helping them along.  I don't want to overdo it, but I really want to get my schooling underway.  Advice would be greatly appreciated!

Monday, April 23, 2012

Appointment and long infusion day

We are at our hospital for our long infusion day, staying over until tomorrow.  Today Emily has received 1 hour of steroids, 4-5 hours for Remicade, 4 hours for Rituxan, followed by a 12 hour round of IViG.   In the past she's had the 4 hour IViG, but it works out better when we just stay over.  Last night we stayed at a hotel because we had an early appointment.  It was easier to stay the night before rather than get two kids up at 5 A.M. to be here for 9.  And we are NOT morning people!  We have agreed to just do the longer infusions now so that we stay overnight here.  I made our next appointment for noon.  That gives us time to drop Zach off at school and run over here.  I like that better.

The doctor saw Zach first this time.  We had to draw his labs here since he's on Methotrexate.  MTX use has a slight risk for developing liver problems.  Zach takes the pills orally instead of sub-Q injections, which increases his risk just a little bit more.  I used Emla (lidocaine numbing cream) on one arm first, with a warning that they may not be able to find a vein.  I am so glad that I thought to utter a disclaimer.  Try #1 produced nothing.  Try #2 produced a blown vein.  Try #3 was handed over to a more experienced poker, who got him on the first try.  Phew!  The doctor was very impressed with how his skin looks, as well as his jaw.   We decided not to change anything with him.  We talked about his hands, how it had looked like he had nodules.  I realized today while looking at them that what we were looking at is a bone, but when his hands swell it looks like a nodule.  Good to know.  So his hands have been swollen a LOT.  Maybe that will change now.  He's only had about 2 complete months on Enbrel.

Emily is always a little more complicated.  Her ankles have been hurting her, but he didn't feel any active arthritis in the really bad one.  Hmmm.  Her back has been bugging her for a long time, too.  When I asked her about her pain level (stupid pain scale 1-10) she said, "that thing doesn't work".  LOL!  My big concern with her right now has been her urine.  I don't think I posted about this before, though I know I mentioned it on my boards. 

About 2 weeks ago she told me that her urine was white.  We kind of "hmmmm"d about it.  I meant to ask the pediatrician about it but at the time I was more worried about her sinus infection.  Well, on Wednesday after school she told me that her urine had blood in it.  That got my attention.  I really didn't know what to do about it.  I couldn't take the day off to go to the doctor's.  I ended up calling the hospital because in the end I thought that it may have something to do with her Mixed Connective Tissue Disease.  She's at a much, much higher risk for kidney problems than healthy people. Kidney failure is a common symptom of MCTD.   We ended up having a urine sample run that day, with the results going to our rheumies.  They had figured it may be a urinary tract infection.  Apparently it isn't an infection or a kidney problem.  They think it's a virus.  He said that if it were a rheumatic kidney problem there would be red cells, increased white blood cells, and something else that I can't think of at the moment, all showing in her urine.  They didn't show, though there was blood in the sample. So the good news is that it doesn't appear to be a kidney problem!  I do believe that this is just another sign of disease progression, though.  It seems like every year the disease gets a little worse, and she gets a little more sick.  She's still doing better than some of our JA kids.  There are several kids that have been forced to go on full-time hospital homebound.  Our doc noted that she looks very pale today, but she seems to be doing ok.  We just filled out her hospital homebound paperwork just in case the home schooling doesn't work out.  I'm trying my best to be prepared.  We also talked briefly about her Raynaud's acting up.  It's not nearly as often as it was before Procardia but the activity has increased.  We're keeping an eye on it.

 She had a meltdown out of the blue.  I'm guessing it's the steroids.  She gets 1000 mgs of SoluMedrol before her other meds.   She was looking at the movie list, trying to pick out movie number 3, when she got upset because she couldn't find Little Mermaid on the list.  I asked to see the list, and promptly found her movie.  She asked for the list back, but still couldn't find it on the list.  Next thing I know she's wailing like it's the end of the world.  And yelling at her brother.  Poor boy has had a really rough day and she's yelling at him.  I know it's the steroids.  It's just surprising because she doesn't normally get upset. She's feeling much better now that she's watching her movie.  

So tonight should be interesting.  Here overnight with two kids.  Usually there's either one sleep chair or one little fold out couch in the room.  Either we'll have to steal a chair from another room or Zach & I will have to share a sleeping area.  That should be fun.  :/  But I'd rather do the longer IViG.  Less chance of reaction that way.  Here's to hoping that the we get some sleep tonight!!!


Friday, April 13, 2012

A little clarity

Well, today has been a much better day than I originally anticipated.  I expected it to be a good day, but not to be filled with so much peace!  That's always a pleasant surprise.  I am so grateful to have had a Thursday night church service that carried me through today floating on air.  Today I fully realize how blessed I am. 

I am blessed to have doctors that actually care about their patients, and don't have that "holier than thou" attitude.  I think that those types of doctors, the ones who think they they are right without even asking for the facts, they miss a lot.  The ones that care- that really go out of their way to help you- they are worth keeping forever.  Because I didn't know what else to do yesterday, I called our hospital to ask what we should do but no one answered when I called.  I left a message and tried a few more times, but to no avail.  I made an appointment with our pediatrician again, figuring that it couldn't hurt.  I was a little reluctant only because she had put Emily on Zithromax but then I called the Infectious Disease docs and they put her on Ceftin.  I didn't feel happy about going behind her back, but with as immune suppressed as Emily is, it takes a specialist to fully understand the complexities of the situation.  Emily's Remicade kills her T-cells and Rituxan kills the B-cells of the immune system.  A 5 day course of Zithromax is like throwing a pebble at a plexiglass window and hoping it will break it.  Also, our first ENT had never bothered to fax her the sensitivity report so she had nothing to go on.  Ugh! All was fine and dandy until Emily's stomach rebelled against the Ceftin.  That left me in an "uh-oh... what do I do?" type of situation.  So, I picked up the Zithromax anyway and gave her a dose, despite knowing that it wasn't going to work.  She had also put Zachary on Zithromax, even when I said that I thought it was the same sinus infection that didn't respond to Z-max.  Also, because she said it was a sinus infection and I have now had 2 ID doctors,  a rheumy, 2 nurse practitioners, and the ENT all tell me that Zithromax doesn't normally work for sinus infections.  I'm not one to tell the doctors what to do (even when I probably should) so I just went with it.  Thursday morning Zach got up coughing and with extreme mucus in his throat, so we went back.  And she says, "I'm so sorry.  I should have listened to you."  Wow!!!  I love her anyway, but that was kind of cool.  I was stunned to find out that Zach had developed an ear infection while on Zithromax.  Zithromax is usually very good for ear infections!  Emily had gotten worse, too, but her chest sounded good.  Zach is more prone to wheezing than Emily. 

Today I was still trying to figure out where to go next, trying to figure out a nice way of telling our rheumies that I thought we needed that immunologist now, when I had an ENT's office call me to tell me that we have an appointment for April 30th.  I have more faith in the ENT's up there because they work more closely with the crew that we know and love.  I feel more secure having our team all in one place.  Then I shouldn't have to fight to get our rheumies the sensitivities!  They are all so helpful, so wonderful to us.  They coordinate for us when I'm still trying to figure out what to do.  Now we just need to get through until then.   

Also, I am floating on air knowing that soon I will be able to spend much more time at home!  I desperately miss my kids when I go to work and have to drop them at school.  I feel terrible making Emily go when she's feeling miserable from the sinus infection, when she's too tired to move, when she's stiff, sore and hurting.  It is very stressful for me to make her get up and go, knowing that she really needs to be home.  I have made the decision to homeschool her and Zachary next year.  We have the virtual school that should make it easy to do.  I will also be in school.  My classes start this summer session- May 14th!  I am so excited!!!  I can't wait!  I think it will be hard to school them and take classes myself, but I know that I can do it.  I know that it will be better for all of us.  I will have to work long days almost every single weekend, but we all make sacrifices for our kids.  I want to spend every minute with them, so this is good.  I'll still be out enough to have conversation, I'll get them out to scouts and church.  I think it will be wonderful!  Besides, Zach needs more one-on-one.  He lacks focus, but at his age we still have time to work on that.  I feel free in a way that I haven't felt before.  I had wanted to be a SAHM back when Emily was born.  By the time I found out Zach was on the way I knew that I couldn't do it with two babies.  I wasn't cut out for that!  It was terribly hard on me for the year that I did it, and I said that I wouldn't do it again, but they're older now and in many ways they are so much easier.  And I am so in love with them!!!   I feel like this is a whole new chapter in our lives.  It's scary, but good!!!  Please pray that it all works out!  <3

Thursday, April 12, 2012

Now what? (Cuz' I have NO idea....)

So, to recap for anyone that hasn't kept up with us, in September Emily had the port placed.  In October and November she was inpatient for staph in the port for three weeks.  She was home for about a week when she got the sinus infection.  After trying all of the normal antibiotics, after having her sinuses scraped, then re-suctioned two weeks later, another 31 days on Augmentin, it's back.  We went to our pediatrician on Monday.  She ordered Zithromax, despite my protests.  Our infectious disease doctor at Shands had said that Zithromax doesn't really help sinus infections and it's a waste to try.  So, I had called them to see what else we could do.  They called in a prescription for Ceftin (Cefuroxime) for her.  She had her first dose Monday night.  She was fine that night and Tuesday.  Yesterday I was called to come pick her up from school.  Her stomach was killing her.  So, because I am a pharmacy by now, I had some Zofran to give her.  About a half hour later she vomited.  So, I ran and got the Zithromax anyway.

When I spoke to the ID docs, they had said that really if the Ceftin didn't work then we'd probably have to have a new culture.  That would mean dealing with the ENT's again, but ours doesn't really seem to understand the whole immune suppression thing.  They were under the impression that ten days of antibiotics would be enough and they wouldn't believe the infection was still there until they cultured it again.  So I'm not too thrilled about the idea of talking to them, but ID had really only gotten into this mess because they work so closely with our rheumies.  So what to do?  We have another appointment with our pedi today, but I'm not really expecting much.  Maybe if I just tell people "Ok, her Remicade  wipes out her T-cells AND her Rituxan wipes out her B-cells", maybe they'll understand better?  This is why I really need to become a doctor.  Soooo frustrating! 

In the meantime, we've been tapering her Prednisone down.  Her doctor wanted her down to 3mgs last month, but because her thighs kept hurting we didn't want to jump into it.  We just spaced it out more and tried to "trick" her body into accepting it by doing 3mgs for two days then back up to 3.25 mgs for two days.  We did that for about two weeks.  She seems to be accepting it well.  Her thighs and knees have been stiff and tired, telling me that nothing is under control yet, her ankle has been hurting and she's having back issues.  I think the back issues are from the steroid taper.  Our PT explained that since she went from no curve in her back to too much curve from the steroid belly, her back would be affected when the weight started to drop off.  Even getting better hurts with these damn diseases!!!  Then again, she also doesn't think her Remicade is working.  I hate to mention that to the doctors because we are running out of options.  I believe that our only other option would be Actemra, but knowing so many other kids that were on that and failed it, I don't really consider that a serious option. 

The bright light in all of this is that I told my husband the other night that I WILL be homeschooling them next year.  We will find a way to make it work.  She has missed 57 days of school this school year, mostly due to her infections and hospitalizations.  Because of my work schedule, she knew that she had to go to school unless she was contagious or really just couldn't make it.  She knew that she could call me out of work, but I had to at least try to go to work.  She would have missed a LOT more if I didn't have to work.  So, we're going to sacrifice.  If I can work ten hour days on Saturday and Sunday then we can make it, and they'll be home with me.  Zachary has been begging me to homeschool him for the whole year!  He's doing well, but he is definitely getting sick more often since starting Enbrel.  He's had some headaches but that's about it.

Please, let me know what the heck you would do on the doctor situation!!!  I am lost for once!  Thank you!