Being Real

In all honesty, I am loathe to publish this post.  I am so enjoying seeing Abby’s smile first thing when I open the page, I don’t want to post something that will make that post move down!!  If you somehow missed the last two posts here, please go and read them now.  I really wish I could keep them both as the first thing you see when you come here, but alas, at some point being “real” has to happen, huh?

Before moving on though, some blog housekeeping is in order. 

I FINALLY added some more of the pages I want to have at the top of the blog!!  I added the story of the kids being born (And Then There Were Five), the “Kids Medical History” page, and the “Mito What?” page.  Just in case your quick to scroll past the tabs, thought I would mention that there are new ones there.

I may or may not manage to get all the posts I am working on right now posted this week, however, it might be a busy week here if I am as productive as I’d like to be!!

Finally….THANKS for all the awesome comments on my last post!!  Love hearing from you all….more than I can say.  So, if you’re here, considering posting a comment, please do!!  It really does give me the boost I need to keep going with this….well, and not feel like I am talking to myself that is!!  If you don't have time to make a comment, click on one of the "reactions" at the top of the post and share your feedback that way.  Something....just let me know your here and getting something out of all this rambling!!!

And now for the regularly scheduled post……

Medical Misadventures, Mono & Mycoplasma

It’s never boring over here medically, but we have been busy with so many awesome things, I have had “better” things to write about!!  However, the medical misadventures continue even in the midst of such happy times.

Since our last medical update on 3/21 we have been almost as medically busy as we have been busy in every other way.

I guess I should start with the “misadventure” part first. 

I almost conveniently failed to include it. 

So, last Thursday I was sitting here at the computer slaving over inputting a bunch of stuff so I could wrap up our FSA for 2010 (the thing that had to be faxed in by midnight OR ELSE!!!), when my phone rang and a Ft. Worth number came up on the screen.  I answered and it was the secretary for Palliative Care, Patty.  She says hello and tells me who she is….I respond with my usual, “Hi Patty, how are you today?”.  In the back of my mind I am thinking she is calling to remind me of my appointment with them the next day to talk about Madison.  Patty responds with she’s good and is just calling to see if I am on my way and running late.

WHAT!!??  ON MY WAY?? No, no, no….the appointment is for the NEXT day….isn’t it??  Oh my, let me get my calendar (AKA my life line) and confirm that I am right and Patty is horribly mistaken.  Patty was right….I on the other hand, was horribly mistaken.

I missed a doctor’s appointment.  Not a critical one, but an important one. I know we do hundreds of appointments a year, and not only do I make every one of them, I am prepared and mostly get to each of those appointments early, because well, that’s just my thing, so this really shouldn’t get to me, but it does.  I have only blanked on one other appointment in all this time, but even that one “came to me” as soon as I heard the office on the phone!!  Not this time.  I was absolutely clueless.  It was CLEAR by my response to dear, sweet Patty that I was clueless. I was mortified….Patty was reassuring that all would be okay, we’d just reschedule, and took part of the blame for not having called to remind me of the appointment.

I have decided that I am becoming ADD.  And if nothing else, I am no longer capable of multi-tasking apparently, 

OH MY!!!

Now for our other medical adventures, which can all probably be considered misadventures too huh.

The kids saw their GI motility specialist for our regular follow up.  On the positive side, we had actually made it three months in between appointments like we plan for, and so seldom seem to make!!  There were a few phone conversations during the gap, but I like those much better than being in there all the time, and Dr. O does too.  As a reward, we have actually scheduled to not see him again for FOUR months!!  In 3+ years of seeing him, we have never gotten that long of a break.  I don’t dare hold my breath we will make it that long, but it is at least nice to say we’ll try to make it till then.  Only time will tell.

Chance was (amazingly) my easy one for a change!!  I wish that meant that all is well, but rather, it is because we are doing the best we can with a rather lousy situation.  His GI tract is what it is, and that we are not needing more intervention right now is as successful as we can probably hope to be.  We did discuss some abnormal liver labs from Houston last fall I learned about in February and had those redrawn.  Thankfully they came back normal, so whatever was happening then has resolved and I will happily put my head back in the sand about any possible issues with that organ thank you!!

Madison needed a clean up around her g-tube site again….something we are apparently going to need now and again until such time we decide to go ahead with surgery to move it.  That we have avoided infection and actually made it three months without the need for a clean up IS a huge improvement we will happily take.  After the multitude of times that we have now removed the tube, done the clean up, and put the tube back in, she is finally going into it with total ease.  She even suggested we put in a new g-tube this time since we would have the old one out already, which made perfect sense.  I should say, she is at ease with it as long as I am the one doing the change.  Dr. O’s feelings are a little hurt she won’t let him, but as she said, at least she is letting someone!!!  I can totally see her doing her own g-tube changes before too much longer!!!

Due to a couple of GI bleeds the week before our appointment, and our suspicion that she might be backed up even with going regularly, we headed over to the lab for a KUB (abdominal xray).  And due to a low Albumin on some labs done late last year, we decided to check that out too.  Her albumin was back to normal, and the KUB was clear.  I am not sure what to make of the KUB…..if she is not backed up, why is she bleeding??  Kind of suspect there is no clear answer other than that it’s Madi we are talking about and she likes to throw us curve balls.

I had several things to discuss regarding Miss Abby.  She’d been going through a gut slow down for about a week at that point, and while still maintaining her weight and such, her intake was pitiful and she was back to taking teeny tiny bites, feeling food get stuck, and getting very little in before feeling cruddy.  She’s also been dealing with more intense gas pains that were not helping the situation.  In general, things were just not working right.  We decided to increase the two meds she is currently on (Bethanacol and Amitriptyline) and see if that would make a difference.  Additionally we will be trying a new probiotic to see if that helps at all, and we decided to do some nutrition labs just to make sure she’s managing to get what she needs with her very limited diet.

I am thrilled to say this last week has been MUCH better!!!  The increase in medications has clearly made a difference for her.  Her labs came back looking good too, so limited diet and all, she is getting what she needs to thankfully.

Finally, we discussed when the right time is to seriously consider getting Abby into the Cisapride study in Houston.  It would be, at least initially, a big commitment because we would need to be there regularly in the beginning and any time we might make a change in dose.  It also has risks associated with it that may actually preclude her from participating.  I think of the three kids though, she is both the one most likely to qualify for the study AND the one most likely to get the most improvement from the medication.

Up to this point, I had been thinking that we would consider the study when things got worse for her, which is not totally unreasonable.  However, it occurred to me that it wasn’t so much that I thought she needed to “get worse” to try the med, but more that I didn’t want to make the commitment to being in Houston so much that was holding me back.  Truth be told, if we lived there, she would have been on it already.  I decided to ask Dr. O what his thoughts were on it and shared where I am with it.  I recently considered the possibility that waiting till things were worse might not give the medication as much of a chance to work as it might if we did it before there was further progression.  Dr. O agreed this was a real possibility, and further that one never knows when they might pull the study, and if we have not had a chance to try it before that happens, getting it on a compassionate basis after the fact would be impossible.  If we can get her on the study and it makes a difference for her, if they stop the study our odds of getting the medication still would be considerably improved.  When all was said and done, we both felt like it makes sense to pursue this option now rather than later.  With that, I am attempting to get her in to see the doctor there running the study either later this month when we are scheduled to be there, or in June when we are due back.  We cannot really consider starting her on it till after camp in August anyway, so we have some time to get through the process involved.

Mostly…I am just glad to have made the decision and have Dr. O in agreement.  We will now just have faith that if it’s meant to be it will happen accordingly!!

We had our first appointment with Pain Management for Chance and it was an eye opening, and rather heart breaking process.  While none of the kids deal with much intense pain (very thankfully), once we started talking about it, the reality that they all three live in some level of chronic pain was a difficult thing to consider.  They have become so used to it, have found ways to ignore it, and generally just don’t let it affect them in an obvious way, but the reality is, chronic pain takes a toll even when your pushing through it.  And chronic pain takes energy none of them have to spare.

I was THRILLED with the team approach and that the things we are talking about are NOT medications to deal with the pain, but rather things like acupuncture, biofeedback and PT.  While Chance has some pain daily, it is NOT to a point where medicating it would make sense.  He is tolerating it and these new methods will only serve to improve his ability to cope….ALWAYS a good thing!!!  We start next week with PT and he’ll be starting the acupuncture and biofeedback a week later.

In other news, I currently have a real dislike for any illness starting with the letter M!!!

We did make an appointment and get in to see the pediatrician as I suspected we needed to on that last (medical) post.  We were able to do labs a few days earlier, and while I was glad to hear the issue was not her being anemic again, the reality is that would have been the “easy” answer.  Her labs looked good though, so we were left at square one on why she took another nosedive energy-wise.

However, on exam, we got a better idea.  While it had been a month since the mono diagnosis, and we expected to be released to get back to horseback riding therapy (when she had the energy), upon exam her spleen was still swollen and painful.  Essentially, this means she is still actively fighting the mono, which would help to explain her continued exhaustion and feeling cruddy.

I got the chance (and took it) to talk more intensely with our pediatrician about the immune issues Madison is dealing with, and my intense desire to get a better handle on it.  While she did not have the answer, we did talk about ways we can try to improve things here at home.  Hand washing for Madison will now be obsessive (really??  Wasn’t sure we could get more anal in that respect, but perhaps so) and she’s really encouraging more organic foods and fish oil.  She touched on even more limited exposure to people (we already pretty stringently keep her away from sick people), but keeping her in a bubble is NOT quality of life, so we have limited this as much as I am comfortable doing it & our ped understood.  While I didn’t leave with any profound answers, it was good to know she is in our corner when it comes to getting some handle on this issue.

So the Mono monster is still on the scene.

When we did her labs to look for anemia, we also re-tested for Mycoplasma.  It’s been 4 months since she was diagnosed with her second Mycoplasma infection (first was with mono the first time in early 2009) and treated for it.  At this point, it should have shown that she had fought it (elevated IgG), but not be acutely fighting it (normal IgM).  The results were not ready when we were in the office but they assured me they would call when they came in.

Last Wednesday it occurred to me that I had not heard back from them, and really suspected that might mean it was normal and they had just not had the chance to call. I left a message Thursday morning asking about it, and knew as soon as I answered the phone later that day and heard our ped’s voice on the phone, my suspicion had been wrong.  When things are normal, the nurse calls me.

So Madison’s Mycoplasma testing shows her to still be acutely fighting the bug.  The delay in getting the results to me was due to the ped making some calls to other doctors to get some feedback on what this means.

After talks with both infectious disease and immunology, we are going with the possibility that her IgM to Mycoplasma may stay elevated for as long as 12-18 months, as sometimes happens.  It’s a funky bacteria with no cell wall and the ability to go intracellular…..all of which just means that while typically your IgM to a bacteria drops back to normal after a month, when it’s Mycoplasma it can still say your actively fighting it even when your not anymore.  How’s that for confusing!!! 

With the added complication of the reactivation of the Mono, we are thinking her current symptoms are related to that and not the Mycoplasma, but there is only one way to know for sure….a nasal culture.  For now we will not do further testing unless her condition changes in some way, but know we can do this further testing if need be.  Both of the doctors she talked to expressed considerable concern about Madison’s immune status at this time, and after some discussion we all agree we need to get a better handle on this ASAP.

So, yeah, both Mono & Mycoplasma are in the house!!  Not liking the M illnesses right now at all.

Madison HAS improved some.  She has made it to aquatic therapy, out to Mom’s for a visit, and through two very busy Saturday’s without too significant of a set back.  She’s still insanely fatigued, but not feeling quite as bad in general as she was.  We have seen a melt down (so very unusual for my girl) and an intense desire to snuggle….something I LOVE, but something that makes me uneasy at the same time because it means she is feeling pretty awful right now.  April & May are busy months, and include some much loved activities, so we really need her to stay as stable as possible.  Hoping and praying we can get through this time without too many setbacks!!

Finally, we got back into the orthodontist with both girls after far too long.  When things get crazy it seems like the orthodontist is always the one appointment I can cancel, but this has to stop and we really need to make sure we get in as scheduled this year.  They were very nice about it but the orthodontist did threaten to put a tracking anklet on me so he knew where I was all the time……don’t worry, I told him he’d be exhausted just monitoring it if he did!!!  LOL  Both girls got new colored bands and some new wires and we are due back early next month for bottom braces finally!!!

Every week, sometimes every day, is a new adventure here.  We have already had some warm days, and with those come the excitement that winter is ending, but at the same time, because we live in Texas after all, the realization that summer will be here far too quickly. We are enjoying the cooler times of the day, and any cold front we can get to blow through while we can!!!

Upcoming medically:

First PT appointment for Chance

First Acupuncture & biofeedback session for Chance

A week in Houston at the end of the month, including:

ENT & hearing tests for All

Dr. Koenig (Mito specialist) for all

Immunology for Madison

Cardiology/ECHO & EKG for Madison

Pulmonology for all

GI motility for Chance (and hopefully Abby)

Thanks for your continued prayers!!!  Next installment will be far more fun to read, I promise…LOL.