Monday, January 23, 2012

What’s been going on…

This post is for all you who have been wondering what on earth has been going on with All the Marletts…thanks for caring.

If our main doc got paid for each and every e-mail he receives and sends about Lucy he just might have enough to retire, but then we would be without him, and that would be no good!  Last night I sent an e-mail to our good doc who just so happens to be in South America helping another family in need, yeah he is amazing like that!  He e-mailed me back saying that he is “concerned”, and then discussed a plan that he was going to relay back to the other doctors in the group.  Concern, concerning, concerned, those three tenses just about sum up Lucy’s past, present, and future health! 

I have mentioned on more than a few occasions how Lucy has been battling reoccurring yeast, she is coated with it from head to toe!  In particular she has been suffering with severe oral thrush that we just can’t get rid of!  After several e-mails, discussions, appointments, and cultures, we learned that Lucy is growing a very rare form of candida yeast that is resistant to the antifungal that we have been using to treat it.  Infectious disease was consulted, and it was decided that we need switch Lucy’s antifungal.  This type of med change typically requires a stay in the hospital; however, Dr. R was able to get permission from infectious disease to allow us to have her first infusion given in day med.  This  meant no overnight hospital admission, but if an admission was the only way she was going to be able to get the med, we were willing to do it.   That’s how badly she needed to get started on this med!  Poor girly, the corners of her lips and and mouth were covered in blisters.   

Since starting Lucy on the new anti-fungal on Monday, she has developed quite a few concerning symptoms: diarrhea, fever, tachycardia, erratic heart rates, hypotension, and vasodilation.  Why am I surprised(insert sarcasm, fatigue, and worry)?  Antifungals are difficult meds to be on, this particular med that Lucy is on came with an eight page packet of side effects.  What’s confusing is that our girl already experiences a lot to the side effects of the medication.  After talking with the on call doc this weekend, we have decided to do an on-off-on trial with Lucy to see if indeed her symptoms are related to the new med, if her symptoms improve while off of the med then we are going to have to decide whether to continue or change her to a different anti-fungal.  Of course our main doc is still out of the country which makes these decisions all the more challenging.

In other issues, because you know there’s always more, we recently had an appointment with pulmonology.  Lucy is not new to pulmonology, early on her life we had a need to definitively rule out cystic fibrosis as a possible diagnosis.  However we  have been referred to a new pulmonologist, one who specializes in neuromuscular diseases.  In the past few months we have struggled with seeing a decline in Lucy’s overall muscle strength and vascular health.  She is a shallow breather, she has been most of her life and her body has compensated for this up until now.  Her need for supplemental oxygen is not going away post transfusion, she visually looks blue at times, and her profusion in her hands and feet are little to none .  The thought is that everything that we are seeing in Lucy is as a result of disease progression, and that Lucy is in need of more support respiratory wise.   A sleep study was ordered to get a better picture of what is happening to her when she is sleeping, discussions about which meds we can use to help open up and clear out her lungs were had, and orders for chest PT, a.k.a vest therapy, were given.  We don’t disagree with any of these recommendations, we feel that they will help to keep Lucy at her best.  What is difficult is knowing that we are having discussions about disease progression and not being able to do anything to prevent it!  We can treat the symptoms but not the disease.

Sunday, January 15, 2012

Happy New Year!

On your mark, get set, go go go…that is exactly how our year started, not unlike last year, or the year before that…

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Our life is busy, of course it is we have four kids!  Our days are full of the typical everyday stuff and the the not so typical everyday stuff.  Last year at this time I was begging and pleading God for more time.  I specifically prayed not just for time, but for more memory making opportunities, and for time to process and reflect.  We have a peace about our life this year that we did not have at this time last year.  Prayers big and small get answered everyday, and we are blessed again to be beginning another year as a family of six!

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We begin every new year off with the celebration of Jack’s birthday, he graced us with his presence eleven years ago on January 4th.  They(whoever “they” are) weren’t kidding when they said they grow up fast!  Why is it that I feel older on Jack’s birthday?   Jack is growing up to become one fine young man, he makes his mama and his daddy so proud.

PC240726 So many have asked us about our holidays, thanks for asking.  We celebrated a wonderful Christmas at home, the six of us and my parents!  The week leading up to Christmas was stressful, of course, but not just because I had a million things to accomplish for the holiday, but because Miss Lucy had to go and make things a little exciting, you know with the whole serotonin syndrome business.   If I recall the week leading up to Christmas we could be seen at DuPont almost everyday for one reason or another.  Lucy got a new GJ-tube(tube #24, but who’s counting) for Christmas as she was in need of one that would drain! Jack happened to get a virus for Christmas this year that landed him in bed for the better part of Christmas and a few days following, not the best present but he has fully recovered back to the Jack we know and love, so all’s well that ends well.

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As Drew and I surveyed the presents under our Christmas tree and the stockings all hung by our chimney with care, I was in awe of all that we had accomplished.  How and when we had time to communicate with the North Pole I just don’t remember, but I impressed myself this year!  All of our kids were happy, which is the best gift any parent can get for Christmas.

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