Tuesday, December 31, 2013

It's New Years Eve...

But then again you probably knew that.

Me, I woke up, more like was woken up by the urology resident, at 6:29 this morning and had this realization.  

We are going to meet our health insurance deductible, and most likely our co-insurance limit, on the first of the year.  How many of you can claim that?

I'm going to ring in the New Year with my favorite little red head…although her hair is not looking so red these days.  She's in need of a bath, that always seems to bring out the red in her hair.

Drew and the kids are tired, there have been a lot of late nights and early mornings over that past few weeks.  Instead of starting the new year off exhausted, they left the hospital before nine so that they can wake rested and ready to start the new year.

Tomorrow night Drew and I are planning on spending some time together, we really haven't seen that much of each other, I miss him.  We are going to rewind the clock and celebrate the new year tomorrow…because we can ;).

Things with Lucy are about the same today, we are trying to space out some of her PRN(per requested need) meds in an effort to assess her pain level.  She has been sleeping so much it's difficult to know how she is feeling.  When she wakes and has pain we aren't sure if it's because we got behind on pain control or if her pain is increasing…ugh.  If I had to guess I don't think she is hurting more, I just think she is hurting the same; therefore, any decrease in her pain meds makes it seem like she is hurting more.    We are taking Lucy's lead on things, standing by her side hoping and praying for her body to heal and her pain to diminish.

There was a code blue called on the floor tonight.  Minutes before I was just coming back from dinner, I am so thankful that I was back in Lucy's room when the code was called.  The kids and Drew were just coming back on the floor when things were happening, the look on Megan's face I'll never forget.  We all said a prayer for the child and also a prayer of gratitude.

I'm not one to make public declarations, I would just be setting myself up for failure and who needs that.  What I am going to continue to strive to do this year is create as many memories as we can with our little family.  Time is precious, be grateful, and live life.

Monday, December 30, 2013

Deciphering pain...

"My bladder hurts!", Lucy has been consistanly telling us this for almost two weeks.  For her to localize where the pain is coming from is quite amazing, really!  She is has not wavered in telling us where she hurts, except for the two times we went and stuck something in her bottom - then she told us, "My bottom hurts!", smart girl.

What we are trying to figure out is the type of bladder pain Lucy is experiencing now.  Is her pain coming from the inflammation and erosion of her bladder, or is it pain from bladder spasms, or both.  It is obvious that Lucy is in pain, but if it's pain from bladder spasms then we need to treat it with a different medication than if it is pain from erosion of her bladder.  

Lucy hasn't leaked urine since last week, which had us all wondering if she was still experiencing bladder spasms, especially since we injected her bladder with twenty-one injections of Botox on Friday in hopes of stopping the incessant bladder spasms.  Today Lucy underwent a urodynamics study to measure the contractions of the bladder as it fills.  Yep, the study is about as uncomfortable as it sounds.  We learned from the study that Lucy is not experiencing bladder spasms, which means that the Botox worked, or maybe the Oxytrol, or maybe both.  Lucy's bladder pain is most likely pain from the inflammation and erosion of the interior of her bladder.  This type of pain is best controlled by using narcotic medicines, which is what we have noticed appears to be working best to control her pain.

All of the narcotics are making our girl very sleepy and "out of it" looking.  We are all hoping that with the change in catheter drainage systems that Lucy's body will start to heal and she will not have to live with so much pain.  Only time will tell, for now we are doing our best to keep her comfortable.  

Thank you for all of your comments from yesterday's post - your thoughts and prayers, love and support mean so much.     

Saturday, December 28, 2013

Clarity…

Warning…this is a long post, with lots of information.  It may cause some confusion, but hopefully it gives more clarification.

Clarity has always been our prayer when it comes to deciphering Lucy's issues.  It sounds like a simple prayer, but oh Lord we recognize that it's anything but simple.

A little background medical history on our girl, humor me for those who have been following our story for a while, it's always good to have a refresher course every now and then.  Lucy suffers from mitochondrial disease, a disease of energy metabolism in which the body is unable to effectively convert food and oxygen into energy.  The mitochondria, if you remember back to your biology days, are responsible for creating energy or more scientifically adenosine triphosphate(ATP).  Mitochondrial disease is a cellular disease, mitochondria are present in every cell of our bodies minus our red blood cells; therefore, mitochondrial disease can affect the whole body. Persons who suffer with the disease experience a myriad of symptoms that range in severity from mild to severe.  Unfortunately for Lucy, her issues tend to gravitate toward the more severe side.  Mitochondrial disease is an incurable disease at the present time.  Sadly, there are little to no proven treatments or drugs that can be used to treat the disease - no FDA approved drugs or proven therapies.  The "mito cocktail" is a custom combination of vitamins and co-factors that are, for all intensive purposes, used to assist the body with metabolism.  It is by no means a proven therapy for patients with mitochondrial disease.  Instead what is done is to treat the symptoms of mitochondrial disease.  For our girl that means treating her failing intestinal system, her dysfunctional nervous system, her seizure disorder, her severe hypotonia which affects most of the muscles in her body, her cognitive and physical delays, her body's inability to produce sufficient blood cells which impacts her immune system, her pancreas, gallbladder, liver, stomach, small bowel, colon, bladder…

With every treatment option presented for Lucy there have been or are risks and benefits, pros and cons, quality of life hopes and concerns.  We have weighed every decision that we have been confronted with by asking, "Will whatever we choose improve Lucy's current quality of life?".  Please recognize that the decisions we have made are just that, decisions that WE, not you, have made.  I mean this in the nicest way, if I have learned one thing in all of things we have been through in Lucy's five years of life, it is that you never know how you will react until you yourself are faced with having to make a decision.

Intervening with one area of the body often has a domino effect when dealing with a systemic disease - you fix one problem only to create more problems.  Problems that are hopefully also treatable or at the very least livable.  Intervening with Lucy's falling intestinal system disturbed the delicate balance of bacteria living in her body, this disturbance has caused issues throughout her body that has lead to our "war on bacteria".  While simultaneously fighting this war, we are fighting with disease progression - one organ after another being affected by the disease.

Which leads us to our most current issue, Lucy's bladder.  Lucy was diagnosed with a neurogenic bladder at around three years of age.  Similar to her failing gastrointestinal system, the nerves and muscles in her bladder do not function correctly, they fail to signal her body to urinate leading to urinary retention that is painful and infection causing.   In an effort to assist her body with this process we began intermittent catheterization years ago.  We cathed our girl this way until last year at around this time when her bladder and urethra became too damaged and diseased for us to drain her urine like this.  We decided to surgically place a hole in Lucy's bladder just above her pubic bone in which we placed a tube that continuously drains urine.  This procedure was know as a suprapubic cystostomy.  We chose to do this as a comfort measure to help alleviate the pain and discomfort associated with straight cathing.  Here's the thing, a foreign object in the body is not natural, our bodies were not designed to accommodate non-human parts.

Upon admission on December 16th we discovered, in addition to severe pancreatitis, that Lucy's urine culture grew positive for yeast.  These two issues are seemingly unrelated; however, when Lucy's body gets stressed from illness it seems to exacerbate other problems in her body - the domino effect I was describing earlier.  Yeast is very sticky and likes to stick to plastic tubing, as such we knew that we needed to replace the tube in Lucy's bladder to try to eliminate it.  Here's the thing with yeast in the bladder, once it resides in there it's not really going to go away - fungus is tricky like that.   In reality, there are several organisms that reside inside of Lucy's bladder, for the most part they live there peacefully - what I mean is that they are not infection causing.  When the bacteria and yeast overpopulate and cause an infection, that's when we treat.  Replacing the tube in her bladder appeared to eliminate the overpopulation of yeast.  Repeated urine cultures after we replaced the tube have all come back negative for yeast.  However, on Monday when Lucy was in the OR, they replaced her tube again and sent the tip of the tube off for culture.  We just learned that it grew positive for yeast.  Like I said, yeast is tricky.

We are in a very difficult spot when it comes to treating infections for many reasons.  Lucy is on continual "big gun" IV anti-fungals and rotating antibiotics all in an effort to keep her infection free for as long as possible.  We recognize that this is not a standard treatment option, but when it comes to Lucy the standards are different, they just are.  Our reasons for pursuing this treatment option were truly quality of life reasons.  Keeping the infections at bay for as long as possible hopefully means less time living in the hospital and more time living at home.  On the flip side, it also means that if an infection occurs it will most likely be difficult for us to treat.  There are not as many anti-fungals as there are antibiotics in the pharmaceutical world, which means our med options are limited.  Even more limiting is the fact that Lucy has had multiple fungal infections in her life that we have treated.  The fungus that she is growing in her bladder is resistant to many of the anti-fungals that we have used before.  The only other anti-fungal option left for us to treat the fungus in Lucy's bladder is Amphotericin - nickname "ampho-terrible".  The yeast in her bladder is there, but not infection causing, therefore we are holding off on treating her for this.  In all honestly, we are afraid of two things.  One, her becoming resistant to ampho if we were to use it to treat the yeast in her bladder, it's the only remaining anti-fungal option we have if she were to get a systemic fungal infection.  We don't want to have to use it unless we really need it!  And two, our team is terrified that Lucy would not survive an ampho infusion, she is too medically fragile and the medicine is really that awful!  

It's evident to everyone that knows and loves our girl that Lucy is in a lot of pain!  Since a fungal bladder infection was not the source of Lucy's excruciating bladder pain, it begs the question then, what is?   Our best guess is that the pancreatitis set off a series of events inside of Lucy's body, stressing her bladder which has lead to an increase in bladder spasms and even more inflammation in her bladder, an already very diseased organ in her body.  It was the straw that broke the camel's back, so to speak.

As her belly pain from the pancreatitis was beginning to subside by the end of last week, her bladder pain was dramatically increasing.  Incessant bladder spasms were causing Lucy to actually soak through diapers, it's the propulsion from the bladder spasms that is causing this because Lucy cannot urinate on her own.  Lucy's complaints shifted from telling us her belly hurt, to crying that her bladder hurt her "a lot".  We attempted to instill a numbing medication in the bladder in hopes of alleviating her pain, instilling anything into the bladder caused her more pain!  We discontinued all meds into the bladder and switched Lucy to a topical oxybutynin patch in hopes of helping control her bladder spasms.  Sadly the patch at the dose Lucy requires causes vision loss in our girl.  For now vision loss is something that we are willing to accept if comfort can be achieved.   The correlation between Lucy's vision loss and the patch was a discovery our urologist put together last year when we were using the patch regularly.  We discontinued the use of the patch post suprapubic surgery because for a while there Lucy was not experiencing bladder spasms.  Unfortunately, bladder spams started plaguing Lucy again in September when she became sick with sepsis from cholangititis.

Pain management has been our number one priority, but comfort at all costs is something we are not willing to say - at least not yet.  Comfort at all costs means just that, we will achieve comfort no matter what.   We increased Lucy's pain medications dramatically over the course of the past 11 days, but Lucy tends to walk a fine line between pain control and breathing.  By Sunday her pain had increased dramatically and during rounds Lucy clearly showed the team just how much pain she is experiencing.  Our main doc was compassionate and quick to respond as was the Chief of Urology who was on call and meeting Lucy for the first time in person.  Sure he knew of Lucy, she kinda has a reputation around the hospital for being an exceptional gal, but to meet her in person for the first time under these circumstances made an impression.   Both docs agreed that shortening the interval between her Valium dose from every three to every two hours could help, Valium is a very effective med for bladder spasms.  In reality it didn't help, instead it suppressed her respiratory drive enough that she was in need of quite a lot of breathing assistance from Vapotherm.

Very early Monday morning while switching Lucy over to Vapotherm we simultaneously made the switch to a PCA pump of dilaudid.  This allows Lucy to receive a continuous infusion of pain medicine as opposed to receiving scheduled doses of pain medicine every few hours in which the medicine was wearing off before her next scheduled dose.  Our girl was riding the awful roller coaster ride of scheduled dose narcotics in which you experience the peaks and valleys of the medicine.  The PCA allows a continuous infusion of pain medicine that eliminates the peaks and valleys.  It has made a difference, thankfully, but as her pain persists her tolerance to the medications are building.

Over the course of the past several months Lucy's picky picky bladder has been a source of discomfort and frustration.  Cultures have for the most part been negative for bacteria, with the exception of the positive yeast culture, but her urinalysis has shown persistent white cells over the past month.  All of her bladder issues, combined with the dramatic increase in pain since admission, prompted us to take Lucy to the OR on Monday to examine her bladder and assess the situation.  While in the OR we also planned on instilling Lucy's bladder with a "bladder cocktail" containing a steroid for inflammation, heparin to dissolve blood clots, gentamicin for antibiotic coverage, and marcain for pain control  While preforming the cystoscopy they discovered severe inflammation in Lucy's bladder, most likely due to disease progression, and also from having and indwelling catheter in her bladder for so long.  In fact they discovered the indwelling Foley catheter that we have been using to drain Lucy's bladder has been causing constant irritation to the bottom of her bladder, the trigone, the most sensitive part of the bladder.  This constant irritation has lead to erosion to this area.  The debris and sediment that has been clogging Lucy's bladder is caused by tissue and cells from the erosion of her bladder.  Poor girl, the Chief of Urology who preformed the procedure came out of the OR several times to discuss his findings with Drew and I.  He attempted to described to us the type of pain that Lucy is experiencing, I will spare you the description and just tell you that it is an excruciating pain!  In an effort to stop the constant assault to the bottom of her bladder, we had to change the type of drainage tube we were using from a Foley catheter to a pigtail drain.  A pigtail drain, although a bit stiffer than a Foley, does not have a poky end, but rather a curly end that forms a loop when installed, hence the name.  Our hope with this type of drainage system is to prevent the tube from poking into the bottom of Lucy's bladder.

In spite of changing the type of tube and instilling the "bladder cocktail", Lucy's bladder pain and bladder spams continue to persist.  We took Lucy back to the OR yesterday to give Botox injections into her bladder in an attempt to stop the incessant bladder spasms that are so painful.  Lucy is being described as having interstitial cystitis/painful bladder syndrome, but she does not really fit the profile for the disease.  In reality, Lucy's bladder issues are related to her underlying mitochondrial disease.  We have intervened with so many areas of Lucy's body, prolonging her life, more and more organ systems have become affected by the disease.  We are not sure if the Botox will work, but at this point we felt that it was worth trying.  So far we have not noticed any changes, if anything she is more uncomfortable from the procedure and bladder spasms are still persistent.

While discussing the enormity of our situation with the many loving and caring doctors in our life, I keep saying to them that I can't believe it's her bladder that is going to take her down, her bladder.  Their overwhelming response is it's not really her bladder that is going to take her down, it's the disease progression, her bladder just happens to be the biggest source of pain and discomfort at the moment.  

We are in a very difficult position, at another cross roads.  We are running out of medical options that could improve Lucy's comfort and quality of life when it comes to her bladder.  At times it seems almost unbelievable that we are here, mainly because we have always had the most "out of the box" thinking and extreme options presented to us all throughout Lucy's life that have, for the most part, provided her with the "best longest life".  It feels surreal to be at the point where we have exhausted all of those options and now need to consider "comfort at all costs".   We are not giving up hope, we will never lose hope.

Friday, December 27, 2013

Back to the OR...

I am working on a post in which I detail more of the issues surrounding our current issues.  I promise to post it soon, I just need more than a few minutes here and a few minutes there to get my thoughts out clearly.  Soothing a very cranky and uncomfortable girly has been a full time job as of late.  I am a mom, comfort is what I do best.



In the meantime I wanted to quickly share with you that we are heading back to the OR today, sometime around noon.  We are going to make some changes to the new drainage system we placed in Lucy's bladder on Monday in hopes of having it drain better.  We are also going to attempt to inject Lucy's bladder with Botox to help prevent the incessant and extremely painful bladder spasms.  We really don't know if this will work, but at this point it's worth trying.  Our fabulous urology team(really and truly they are THE BEST) is also going to look inside of Lucy's bladder and asses whether or not the "bladder cocktail" they instilled in on Monday helped with the severe inflammation that is also a source of so much pain.

Your thoughts and prayers, love and support are once again very much appreciated.  Here's hoping and praying that what we do today makes a difference for Lucy, she is in so much pain.

Wednesday, December 25, 2013

'Twas the night before Christmas...






Many thanks to all of Santa's elves for making ALL of this possible!

Tuesday, December 24, 2013

Silent Night...

Ah, not really!

We are making the best of a not so ideal situation, we're spending Christmas together in the hospital.  



There's a slumber party going on in Lucy's room tonight!  Tomorrow morning I will receive the best Christmas present ever, waking up with all four of my kiddos and my husband on Christmas morning in room 3708 "our home away from home".

Merry Christmas to all and to all a good night, hopefully ;).

Back in our room...

Just wanted to let you know that we settled back in our room.  Lucy's procedure proved to be informative.  Again I will include more detail in a later post.  Thank you for your thoughts and prayers, love and support.

Monday, December 23, 2013

In the OR

I apologize for the lack of detailed updates.  When I have more time I will detail with you some of the events that have lead us to where we are currently with Lucy's most recent issues.  Lucy is currently in the OR having her bladder scoped in an effort for us to try and figure out why she is in so much pain.  Prayers for comfort and clarity are once again welcome.

Painful...

Lucy, Lucy, Lucy…oh Lucy!

My mama heart aches for you and what you have had to endure and what you are having to endure at the moment.   It's painful for me to witness you in pain! 

I will write in more detail about Lucy's most recent issues in a later post.  For now I will simply say that Lucy's bladder pain is beyond what any of us who know and love our girl ever thought possible.  Like many of the organs in Lucy's body, her bladder is affected by her disease and as such is another deteriorating organ system. 

Pain control is proving to be extremely difficult.  We have been increasing her pain meds dramatically over the weekend all in an effort to make Lucy's pain tolerable.  Keeping Lucy breathing and her pain tolerable, it's difficult. 

I am currently watching and listening to our girl struggle to breath, she is retracting so badly.  We just made the switch from her regular oxygen to Vapotherm,  a high flow oxygen delivery device.  She is proving to everyone that she is in need of a lot of breathing assistance at the moment. 

Prayers for Lucy's peace and comfort continue to be needed.   

Saturday, December 21, 2013

From where I sit...



 Lucy could use some prayers for peace and comfort,
 as well as some prayers for clarity on her issues. 

Thank you for your love and support, thoughts and prayers.


Friday, December 20, 2013

Tomorrow's another day...

It's late and I am just heading to bed, but I wanted to just give a quick summary of our day….

It was much the same as the day before, not much change.  Lucy's bladder is really bothering her.  We are waiting on culture results to find out specifics on the yeast.  Some of our docs are inclined to treat it right away while others are waiting for more information.  I see the logic and reasoning behind both points of view, either way we need to find a way to keep our girl comfortable.

I am hoping tomorrow we will gain more clarity on the issues and discuss a plan for moving forward.

I sent an email to a friend earlier today in which I told him that I was relinquishing all control over the calendar - in other words I was going to stop obsessing over whether or not we were going to be home for the holidays.  Then I asked him if I sounded convincing, to which he simply replied "no".  I'm trying, really I'm trying.

Thanks to Lucy's school friends for making her the most creative paper ornaments for her Christmas tree, they are beautiful!  Our CCF family gathered tonight to celebrate the holidays together by making ornaments.  We hung them on a small tree that afterwards was brought to Lucy's room for her to enjoy. It's beginning to look a lot like Christmas:).

Thanks for all of your thoughts and prayers, love and support.

Thursday, December 19, 2013

Mama, I don't feel good...

Our secondary bladder issue, has become a more of a major issue.  Bladder pain was a huge problem for our girl today.  We attempted instilling her picky picky bladder with Lidocaine all in an effort to help Lucy cope with the discomfort.  She continues to require around the clock pain medicine despite her lipase trending down. 

"Mama I don't feel good" she said to me in her very quiet voice just before falling asleep.

When Lucy has been awake she is only comfortable for brief periods of time.  For the most part the above picture is what our girl has been doing for the past three weeks. Sleepy, sleepy Lucy her body fights so hard just to keep on living, she doesn't know how to live any other way. 

Wednesday, December 18, 2013

Send us some holiday cheer...

Back by popular demand, e-cards.  Help us overload the system here at the hospital, and send Lucy some holiday cheer (our friends in patient relations gave us permission to do so :).





Just click this link and follow the directions on the hospital web site.

Lucy's room number is 3708.

On the fence...

Not much change in our girl clinically today.  Her lipase did come down quite bit from the +15,000 it was yesterday, but it's still in the thousands which is very high.  Our pain management plan seems to be working; however, Lucy was much more irritable today.  Tonight was rough as well, Drew and the kids came to see us but Lucy was grumpy and very tired.

After some discussion during rounds this morning, there is a concern that Lucy has an infection that could be causing this.  Our main doc and I both suspect that Lucy was septic yesterday, which is why he choose to make an abrupt change to her antibiotic coverage.  It's funny but neither one of us wanted to discuss this thought with each other yesterday.   Her white cell count came down a bit, but is still very high for Lucy.

In an effort to assist Lucy's body with all of the systemic issues she has going on at the moment, we tripled her normal fluid rate.  Needless to say she is looking a little puffy today.  Dr. R is very concerned about Lucy having a systemic inflammatory response to all that she has going on, so he is monitoring her very closely for any changes that could indicate that she is heading in the wrong direction.

Lucy's urine is a cause for concern, she is growing yeast.  This is a significant finding, but we believe that it's secondary to everything else that she has going on.  Despite it being a secondary issue, of primary concern this afternoon was changing Lucy's supra-pubic catheter.  Poor baby, I can think of nothing worse than waking from a deep sleep to somebody pulling something out of a hole in your body…geez, it's no wonder she's so irritable.  Infectious disease has been consulted on this issue as Lucy has been on an IV anti fugal for the better part of the past year.

In conclusion, Lucy is on the fence at the moment.  She could go either way, it's up to Lucy's body to let us know what it's going to do.  Do you think it cares that Christmas is a week away?



Monday, December 16, 2013

Our home away from home...

We have been admitted to "our home away from home" yet again, and so close to the holidays.

What is it with Lucy and being in the hospital for the holidays?

In case you've lost count, there are only 8 days remaining before Christmas, 8 days!

Here's hoping for a miraculous recovery for Lucy, and also that UPS pulls through for us.

Lucy has a pretty severe case of pancreatits as well as an infection somewhere.  Where, we don't know that just yet.  There is some speculation that it could be in her urine, her urinalysis looks suspicious.   There is also a fear that she has bacterial pancreatitis, meaning that it's an infection in her pancreas that is reeking havoc on our girl.  It could be both... or something else...you never know with Lucy which is why we are here.

Lucy's white blood cell count is very elevated for her, this has us all scratching our heads because she has not elicited a fever from all of this.  This is not the first time we have seen her do this, she had sepsis in September without a fever.  We made another change to her antibiotic coverage, ramping up our gram negative coverage.


(Poor baby would not let go of the bucket, she's even sleeping with it tonight)

Pain control was priority number one when we arrived to the hospital at around 4:45am!  Lucy was in so much pain it literally made her sick.  Vomiting is not something Lucy does often, nor is it something we want her to be doing.  She doesn't have the muscle strength to bring it all up or move her own body to get it out (sorry to those of you who are weak in the stomach), we worry that the infected bile that she is vomiting is flooding her lungs which can potentially cause an aspiration pneumonia.  Poor baby struggled until we got on top of her pain.


(Yikes, a heart rate of 181 bpm, and an elevated blood pressure to boot)

The cocktail of pain meds that we are giving her appears to be helping.  Pain team is so familiar with our girl, dare I say it was easy coming up with a multi-phase plan for pain management should Lucy's needs escalate over night.  There was even a time this afternoon while infusing her plethora of her pain that we all were able to enjoy a silly, very chatty Lucy.  Hey, we'll take the good times whenever we can get them.    

We are so grateful for the amazing team of doctors and nurses who know and love our girl! They help to make our life livable, and that's saying a lot!

I had all of twenty minutes of sleep last night…at least it was something, right!?!

Wrong!

Lucy's meds are all ordered and timed correctly and we have a fabulous nurse working with us tonight.

Translation, I am planning on sleeping ALL night.

Thanks for your thoughts and prayers, love and support.




ED...

Lucy woke in the middle of the night with increased abdominal pain that was way above and beyond her normal belly pain.  She's shaking, retching, vomiting…and just plain miserable.

Not sure what's going on but everyone is working hard at trying to figure things out.

Packing Lucy up quickly…it should be an Olympic event.  I think I have what we need to keep her on med schedule until orders can be entered into the system and pharmacy can begin compounding everything.

This life, our life, it's not for the weary or faint of heart.  If you could please say a prayer for comfort and clarity for our little one we would very much appreciate it.

Tuesday, December 10, 2013

Secured...

We are home, safe and sound.  By the time we left the hospital this evening the snow had stopped and the roads were better.  The big kids are nestled all snug in their beds, while Lucy and I are snuggled together in my bed - infusing meds, what else is new.

Today's procedure was not quite as simple as we were hoping it would be, but then again is it ever really simple!?!

Our surgeon and IR doc came out to tell me the good, the bad, and the ugly.  Basically, the stoma tract has stretched out considerably, and as such it's becoming increasingly difficult place and keep a tube in it.  Our goal is to keep the tract open, but not necessarily draining because as long as Luc has a stent in her bile duct there is an outlet for bile to drain.  The benefit to keeping this tract is so that we have a back up for if and when there is ever a problem with her stent.  This tube serves as a window or a porthole into the area of her body that is a huge cause of concern.  It's very simple for us to inject a little contrast through her tube and see just how things are flowing without having to subject Lucy to repeated MRIs.  

While  attempting to suture the tube securely to Lucy the tip of the suture needle broke off causing our surgeon to have to make a small incision in our girl's abdomen to retrieve the broken piece of the needle…seriously.  To add insult to injury our surgeon accidentally dislodged the tube while all of this was happening and another tube had to be placed.  In his defense the tube does not stay in place without it being sutured.  Does anyone else see the irony in this?  As unbelievable as all of this sounds, it was humorous to hear them both tell me what had happened.

Unfortunately, Miss Lucy has had to deal with the brunt of all of this.  She was experiencing quite a bit more pain tonight as a result of all that she had to endure today.  Pain meds are a good thing.

When all was said and done another Malecot tube was finally sutured securely in place.  Here's hoping that it stays in place well into the new year!

I am declaring tomorrow a snow day for Lucy and I!   We are going to cozy up together and maybe make some gingerbread men... her favorite kind of men.

Thanks as always for your thoughts and prayers, love and support.

Rinse, Lather, Repeat…Ugh!

It's snowing, and as such our kids have their first official snow day of the school year.  They had a two hour delay yesterday, but that doesn't count according to Jack.

Snow is not wheelchair accessible…just saying.

When I heard the weather report last night I didn't want to believe it.  They predicted Sunday's storm incorrectly…less than an inch turned out to be almost a foot of the white stuff.

This morning I had a bit of a panic attack when I looked out the window after receiving a call from the school district at 5:30am alerting us that school was canceled.   You see, Lucy is scheduled today to have surgery to replace her cholecystostomy tube…again.  Yes, you read that correctly!  Rinse, lather, repeat…ugh!  Less than twenty-four hours from the placement of her tube on Friday night this tube came out because it was not sutured in place.

Not only did I have to pack and prep Lucy to get to the hospital by 11am, I had to find a place for the kids to hang for the day.  Never-a-dull-moment in our life e-v-e-r!

So very very thankful for amazing friends.  The kids packed up all of their snow clothes, sleds, and a few snacks and were on their way to frolic and play, while I prepped and and primed IV bags and meds  to take our girl to the hospital for the day.

After discussing the ins and outs (pun totally intended) of how we are going to keep this tube inside of Lucy, we kissed our girl good night at 12:45pm and left her in the the very capable hands of our IR team and surgeon.  The plan for Lucy is to suture the heck out of this tube…really!

Your thoughts and prayers, love and support are greatly appreciated.  

Friday, December 6, 2013

Update...

Thank you for your prayers, they were able to get a tube back in…whew!!!  Our urologist was also able to take advantage of Lucy being under general anesthesia and did some work on her bladder, Luc has been having some issues with sediment and blood clots clogging her catheter.  We also took the opportunity to change her GJ tube while she was under, we considered it an early Christmas present.

Say a little pray please...

This time last week we were here…


Today we are sitting in the waiting room, waiting for our little one to come out of surgery…again.  Lucy's gallbladder tube came out sometime during the course of last night, not sure exactly when.  By the time I realized this her stoma, or the hole that the tube comes out of, was closed shut.  I could not insert anything into the hole to try and open it up.  This discovery set several balls in motion today which ultimately ended with a team of doctors and nurses working together to try and reinsert a new tube into Lucy's gallbladder site. There is a very real fear that we may not be able to get a tube back in…if this is the case we will need to weigh the risks vs the benefits of putting Lucy through another gallbladder tube surgery.  

If you could say a little prayer please that our wonderful team of docs will be able to reinsert a wire and dilate Lucy's stoma enough to get a tube back in, we would be ever so grateful.