Sunday, December 25, 2011

Merry Christmas to all…

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and to all a good night!

Friday, December 23, 2011

A quick update…

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So far cultures are still negative, we would be very surprised if that changes. Lucy’s urine culture did come back with bacteria that she has grown before. We believe that her bladder is most likely colonized with the bacteria, we are not really surprised since she has a neurogenic bladder and is cathed several times a day, everyday. We believe that Lucy experienced a very rare side effect, serotonin syndrome, from the medication that she started on Friday. We started Lucy on Lexapro, it is an SSRI-selective serotonin reuptake inhibitor. These types of meds are most commonly used to treat depression, this is not why we were using this med for Lucy. SSRI’s are also used as an effective pain management medicine for individuals with neuropathic pain, the type of pain that we believe Lucy experiences on a daily basis. In theory this would have been a good alternative to narcotic pain relief for Lucy…if it had worked. Serotonin syndrome can be fatal if it is not detected early, the treatment is discontinuation of the medicine and supportive medicine for the resulting symptoms. Lucy only had one dose of the medicine, thank God, we don’t even want to think about what could have happened if she had any more than that. Lucy’s autonomic system is storming due to her adverse reaction to the med; blood pressures, heart rates, body temperatures, are all over the place. Her neurological system took the brunt of the impact, affecting her balance, speech, movements, and causing seizures. As the medication metabolizes through her system we are seeing a decrease in her symptoms.

When discussing Lucy’s symptoms with our main doc he said that he was surprised, but then again not, it’s Lucy! I know I have mentioned this before, you know the fine print that reads less than 1% of people will experience this, that, or the other when taking this medication, that’s Lucy! Our palliative and hospice care team have officially been initiated into Lucy’s medical world.

Sunday, December 18, 2011

No news…

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I have not heard from the hospital or our main doc, which means that cultures have not grow anything as of yet, that’s good.  The cardiologist on call last night confirmed, based on the EKG they did in the ED ,that Lucy is experiencing sinus tachycardia.  We’re not at all surprised with this finding, but what we are wondering is what is causing it.  The fear is that it could become more serious, for now we are monitoring her heart rates very closely, and will be in contact with our main doc and cardiologist tomorrow…I see another holter monitor in Lucy’s near future. 

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We started Lucy on a new med Friday night which we hoped would help her neuropathic pain.  Although very rare(for the general population that is, but we are talking about Lucy here so rare is really not that rare), there is a possibility that Lucy’s symptoms are as a result of an adverse reaction to the new medication.  Needless to say, we discontinued the med and will be in touch with our palliative and hospice care team to discuss other options for our girly.  Lucy’s urine came back with an impressive number of white blood cells in it, indicating infection but we won’t really know until we get the culture back.  Perhaps our biggest fear is that the yeast that has overtaken Lucy’s GI tract is circulating in her blood system.  Yeast and central lines are not good, not good at all.  Yeast is difficult to grow on a culture, it likes to hide and then surprise you with one really sick kiddo.  We are praying that this is not it!

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Something is up, what it is we just don’t know yet…this is the hardest part of all of this, the not knowing! Once you know what it is, then you can do something! 

Saturday, December 17, 2011

Twas a week before Christmas…

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And all through our house sounds of Lucy’s heart rate monitor are alarming us all!  We are currently sitting in the ED getting labs and cultures drawn.  Lucy’s heart rates are high >170bpm, she is sitting right at the cutoff for what we consider a fever, and she looks like a little tomato.  On the plus side, she is not really acting “sick”…yet.  We spoke with our main doc, who just happens to be on this weekend, and he agreed to have us come in for labs, cultures, and a EKG and then we can go home and wait for him to call.  We both agree that this is out of Lucy’s norm, and with Christmas just a week away we are trying to be proactive.

Update:

Six hours later we are still here, in the ED.  We are waiting on lab results.  Cultures are cooking and Dr. R has convinced the ED docs to let us go, just as soon as we get a few more lab results back.  Ugh…time definitely does not fly when you are in the hospital!  We are looking forward to picking up our other three kiddos and going to bed.  Please pray for negative cultures, and that things calm down with Lucy’s body. 

Update:

We arrived home at around 12:30 am.  We are going to be keeping a close eye on our girly.  Here’s hoping for a good nights sleep, lord knows we could use one!

Tuesday, December 6, 2011

The Readers Digest version…

Sad but true, I don’t have enough time during the day to sit down and write a blog post from start to finish.  I very often begin posts only to find that days later they remain incomplete.  By the time I sit down to finish writing, I am often too tired to complete a thought much less write one down.  My lack of blogging is certainly not because of a lack of things to blog about…quite the contrary. Things have been busy in our house…I am hard pressed to think of a time when they have not been. In an effort to catch up, I am going to attempt to write the Readers Digest version of medical events.

Lucy an I are spending our afternoon at the hospital in day-med getting a blood transfusion, which is why I have time to write.  Nothing slows me down more than being on hospital time watching blood drip ever so slowly into our little one’s body.  Luc is in need of a boost that blood gives her, we are looking forward to rosier cheeks, lower heart rates, and hopefully a decreased need for oxygen.  Hematology-wise Lucy has developed some new issues, aside from her reoccurring need for blood, it appears that she has developed a clotting disorder that has us all wondering why.  A while back Lucy occluded all four of her IV lines while they were running, to quote our infusion nurse “That’s impressive, but then again it’s Lucy!”.  For the last month we have been running tests on Lucy’s blood to help us understand the cause of her clotting issues.  Dr. R is consulting with hematology in regards to all of this.  On the plus side, we got approval to use TPA ,the medication that is used to break up blood clots, at home which means that when Lucy’s line clots off we no longer have to sit in the emergency room or day med for hours on end waiting for blood to dissolve.

Lucy is battling yeast again still, she is covered in yeast from head to, umm... bottom. For the last month we added oral antifungals to Lucy’s g and j tubes as well as swabbing her mouth with the med in hopes of eradicating the yeast from her entire GI system. We’ve had Lucy on a daily prophylactic IV antifungal since July in hopes of keeping the yeast from entering her bloodstream thus preventing it from getting to her CVL, but it does not work in her stomach and intestines as it does not go through her GI system. Infectious disease has been consulted on this issue because in theory her IV antifungal should be preventing the thrush in Lucy’s mouth. It is thought that Lucy’s poor immune system is playing a role in this issue. We had recent discussions with Dr.R about adding IVIG therapy to Lucy’s list of therapies. In theory this could help to boost Lucy’s immune system, but as we have learned Lucy’s body has other theories.  

We have not had any sleepovers in the hospital as of late and for that we are very grateful!   That is not to say that you haven't seen us around the hospital, we are here at least once or twice a week sometimes more.  In an effort to keep us from sleeping over we continue to increase Lucy’s level of care at home, trying to be proactive.    When Lucy had her most recent central line(CVL) placed in October, our surgeon cautioned us that access is an issue for our girl, she is not easy to get a line into, as a result we need to do everything we can to preserve the integrity of  this line.  In an effort to keep the infections at bay, we began daily ethanol lock therapy on Lucy’s CVL.  This has added another step to our daily med schedule that makes things even more complex, our home nursing agency has expressed to us that they are in uncharted waters when it comes to staffing nursing at our house.  Lucy’s level of care is A LOT, but because we have all of the help that we do have we are able to continue to live our life at home!

When you have a child like Lucy you are always waiting for the other shoe to drop, so to speak…we know she is going to have another line infection,  get sick with another virus, and end up in the hospital again sooner or later.  Drew and I  have had some very serious discussions about life with Lucy’s team, we all hope to give Lucy “the best longest life”.  Mitochondrial disease is a very difficult disease to try and predict, nobody knows what the prognosis is for our girl.  Dr. R uses phrases like “she is not heading in the right direction”, or “she is my sickest patient at the moment”, or “Lucy is the one I am most worried about at the moment,”, but he will also be the one to tell you that you never know what can happen.  He is a glass half full kind of guy, we often refer to him as our eternal optimist, but even so he continues to tell us that he is worried about our girl.  She is very unpredictable, yeah she likes to mess with your mind and heart like that, after all she is a girl.  Knowing what we know about Lucy’s health, hoping for the best, and with the support  and encouragement of Lucy’s team Drew and I agreed to put Lucy on pediatric hospice.  I will write more about this in a later post, but know that this does not mean that we are giving up on treatments, or that we feel that Lucy’s time here on earth is coming to an end.  It is our hope that by adding hospice to our team we will be able to provide Lucy, our entire family for that matter, with supportive care in our home environment.  I would be lying if I said that this was an easy decision, nothing about Lucy’s life has been easy, but we have some peace and comfort in knowing that we have the resources available to us that hospice can provide.

Thanks as always for your thoughts and prayers, love and support, we could never do this alone.    

Baby has a brand new set of wheels…

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Lucy’s new wheelchair is here!  She has outgrown her old chair both in size and medical need.  Her new chair is bigger, heavier, more comfortable for her (not quite as comfortable for me to push), can support the weight of all of her medical equipment, has an IV pole, is pink, and has her name embroidered in pink letters on her seat to match her chair.  This is just a little something special that our wheelchair clinic likes to do for their kiddos  The first thing Lucy said when she saw her new wheelchair, “It my name!”, referring to the embroidery on the seat.   She just about feel out of her chair the first time she sat in it because she was so excited to show anyone and everyone her name.   

 

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Her new chair has both tilt and recline, which means nothing to those of you who have never ordered a wheelchair before, but to those who have this is the reason that Lucy is more comfortable in her new chair, and also why her chair is so heavy(over 100 lbs.).  These two features combined mean that Lucy can be positioned in such a way that we are able to reduce the pressure on her belly, thus allowing her to be more comfortable.

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Baby now needs a brand new ride for her new set of wheels.  We are nearing the end of the process of purchasing a wheelchair-accessible-van.  If you thought buying a car was a process, try buying a car with a wheelchair ramp!  Having a ramp van is going to make our life a whole lot easier when it comes to transporting our crew, especially Lucy!  We had some specific needs for our new wheelchair-accessible-van, mainly adding a fourth seat to the backseat as opposed to just having the third row back seats.  Because of this our options for what type of van and where we could purchase our wheelchair-accessible-van was limited and expensive, the ramp conversion costs almost as much as the van!

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Our family has been blessed by the kindness, caring, love, support, and generosity of others in so many ways we feel humbled and honored!  There are several fundraisers occurring to “Help Us Lift Lucy into Her Van!”.  On Friday night The Hockessin Music School, a school that our family has been involved with for the last 10 years, hosted a family music night in honor of our family in hopes of raising some money for the cost of our van.  We never expected the outpouring of support that we received, it’s simply… amazing!  Additionally, Musikgarten, the music curriculum that our children have learned from, just released a new lullaby CD.  Jill, our friend and children’s music teacher, is selling the new CD for $12.00 as an additional fundraiser.  She and her husband are donating $5 for every CD sold, her sister who also teaches music classes offered to donate an additional $3 for every CD sold, and two very loving and supportive music school families each agreed to donating another $1!  This now means that for every CD sold $10 is going towards the cost of our wheelchair-accessible-van! I was told that at last count 90 CD’s have been sold!  If you are interested in purchasing a CD please leave me a comment in the comments section and we will make this happen.

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If you live locally, there is another fundraiser occurring this Thursday, December 8th at  Wackadoodles Toy Shop. Betsy, the owner of Wackadoodles, heard of our story and very graciously offered to host a fundraiser for our family.   I cannot tell you how amazing it is that our family, our life, our littlest one’s heroic struggle with mitochondrial disease has touched the lives of so many.  It is every parents hope that their child make a difference in this world, we could never have imagined that ours would be doing this at such young age!   We feel so blessed to have the love and support of so many, to be living among those who care so much, to have a community that wants to reach out to those in need…we could never do this alone!  Thank you! 

Here are the details for the upcoming Wackadoodle’s fundraiser, feel free to spread the word!

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Help us lift Lucy into her Van!

Lucy Marlett is a beautiful three year old girl with Mitochondrial disease. Lucy recently moved to a wheel chair that does not fold and weighs over 100 pounds, which makes a wheelchair-accessible-van a necessity!

Here is where you can help. Wackadoodles Toy Shop has graciously offered to donate a percentage of their total sales for one day to the Marlett family to help with the cost of their new wheelchair-accessible-van.

When: You are invited to attend a fun day of shopping at Wackadoodles Toy Shop on Thursday, December 8, 2011.

Where: Wackadoodle’s Toy Shop 61 Jenner’s Village Center West Grove, PA 19390 (Next to Giant) Phone: 610-869-2404

The Details: Wackadoodles Toy Shop will give you 10% off of your total purchase and donate 10% of your total sale to the Marlett family, or you can opt to have Wackadoodles donate the entire 20% or your total sale to the Marlett family. All you need to do is present this coupon to show your support.


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This coupon is good for 10% off of your total purchase at Wackadoodles Toy Shop on Thursday, December 8, 2011. Wackadoodles will donate an additional 10% of your total sale to the Marlett family or you can opt to have Wacakadoodles donate the entire 20% of your total sale to the Marlett family.

Total Sale*__________________________________________

*Offer not valid with any other coupons, promotions, or sale items. This offer is valid for in-stock items only. Total sale does not include tax.