Monday, February 28, 2011

Taking time…

Yesterday we took some time to stop and smell the roses.

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Our family that likes to go, go, go has not really gone, gone, gone, anywhere as a family of six in a long, long, time.  Cold and flu season, combined with freezing cold temps, and the fact that we need to bring half of the hospital with us whenever we go anywhere with Lucy has seriously cramped our style. 

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Yesterdays warm temperatures and the fact that Lucy slept until almost noon made for an almost perfect opportunity four our family to get out of our house.  Two and a half hours of IV med infusions later, no joke, and we were ready to go.  Lucy’s med schedule is a full time job in and of itself.  Drew and I are taking turns waking up infusing and administering meds.  Night nursing is something that we have considered, but for right now we both feel a little weird about the idea of having someone in our house while we are sleeping.

Yesterday, we ventured out to one of our favorite places, Longwood Gardens.  It is so close to our home and yet when we are there we feel like we are so far away.  Enjoy the following picture expose that is my attempt to try and get a somewhat decent picture of our four children.

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Perhaps with some serious, editing I could try and make it “perfect”, but that just wouldn’t be us.

We pushed our luck just a little more and decided to take everyone out for dinner.   

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Pizza and pasta was what was on our menu… not bugs .  I let Jack and Megan have some time with the camera yesterday and this is one of the pics that Jack took.

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Yesterday was just what our family needed.  It felt good to go somewhere other than our usual places school, work, or the hospital.  When we sat down for dinner, our waitress asked us if we were celebrating anything special… the kids chimed in and said “life”.

Please continue to pray for the Agnew family, little Maggie died and went to heaven on Saturday night after fighting a courageous battle with mitochondrial disease.  She left an impression on this world, and will be missed by so many.   

Friday, February 25, 2011

Home Sweet Home…

I am happy to be typing to you from the comforts of my own bed.  We are home and are beginning to comprehend the enormity of the last week and a half.  Lucy now has a double lumen broviac line which has already made life so much easier for us.  There was some miscommunication or misunderstanding, not sure which, with the anesthesiologist that caused some blood sugar issues.  The good news, Lucy rebounded well over 300(that’s very high for those who do not know) but all is back to normal now.  Helen came tonight to create a med schedule and get things organized.  We are all very much in need of sleep and some family time.  Thanks for all of the love and support, thoughts and prayers.  We couldn’t do this alone.

Never lose hope…

When we woke up, and I use the term woke up very loosely as we had another horrible night, our nurse told me that Lucy was eighth on the add on list for surgery today.  Eighth…I was not going to hold my breath that this was going to get done today.  Dr. R came in and promised me that Dr. D would get her done today sometime between 2:30 and 3:00.  As he and I were talking our nurse came in and told us that surgery was ready for her now (11 am).  Dr. R contacted our social worker to say let’s work at getting them home tonight!  I love that everyone here wants the same thing we do…for us to go home and resume living life as a family of six.  Never lose hope…

Thursday, February 24, 2011

Prayers please…

Prayers are needed for our fellow mito warrior, Maggie , she is in the end stages of this disease, suffering immensely.   Please pray that she finds peace and comfort, and that her family continues to have the faith and courage to handle all that has and is to come.

We’re hiding out…

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We are trying to make the best of our situation,  in all honesty I wish that I could crawl up under the covers and hide with Lucy.  Sleep has been an issue this entire admit,  not enough of it that is.  A few months ago we switched Lucy’s reflux med, we don’t think this med is holding her anymore.  Lucy suffers with  gastroesophageal reflux disease (GERD), severe reflux which is causing her to cough and choke especially when she is sleeping, thus causing her to wake and me too.  We are going to be adding an new IV med for reflux with great hopes that this will do the trick.  Our only other option if it does not is surgery, and we all feel that the surgery would be too challenging for our girl.

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Lucy has been fever free today, hooray!  We have several theories as to why Lucy had a fever yesterday and they all boil down to this…her little body has been messed with way too much!  Most likely when they pulled the line, bacteria spread into her bloodstream. Since she has been and continues to be on a multitude of antibiotics we feel we have things covered.  Lucy’s culture did grow out a different bug, a strep bacteria.  Dr. R is going to put her back on IV vancomycin, to cover the gram positive bacteria so that we can be sure that we are covered.  Good and covered is definitely what we are at the moment, she is on five different antibiotics, two antifungals, and dozen or so other meds…it’s a lot!  

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Yesterday we took a trip down to interventional radiology (IR), the place where Lucy gets all of her GJ-tubes inserted.  Dr. R wanted the tube replaced regardless of whether it was still in position.  They took a scan of her belly to check for placement and it was still in position, but barely.  The more surprising finding was that Lucy’s bowels have completely shifted 180 degrees.  Because we had a scan of her abdomen last Friday we could conclude that this happened to her sometime this week.  According to the radiologist it is something they see, but it is not very common, especially for it to happen so quickly.  Like we have said, our girl likes to take the road less traveled, and boy is she ever.  Due to the increase in belly pain it was decided that we would try a shorter J-tube this time in hopes of alleviating some of Lucy’s pain.  We all feel that this tube will migrate out of her intestines and into her stomach fairly quickly, but it is worth trying since she is so uncomfortable.  Yesterday’s tube placement went fairly quickly, it was because her belly was empty.  When all was said and done Lucy said “I cried teeny bit”, I think that even she was amazed at how quickly they were able to place her new tubie. 

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Dr. R is negotiating with surgeons today to see if anyone would be willing to place a line in Lucy tomorrow.  He knows and understands that we want to go home, and he believes that since pulling the line, we have eliminated the source of Lucy’s infections.  He just needs to convince surgery of this.  I will wait patiently for him to come back this afternoon and give me the verdict…really, I will.

Drew and the kids are coming for dinner and our monthly support group meeting, Chronically Cool Families.  Helen is coming to stay and play with Lucy since she is still on isolation and can’t leave our room.  I am looking forward to seeing everybody and Lucy is too. 

Wednesday, February 23, 2011

Fever and Positive Cultures…

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It is a mindset, hospital stays, you have to be able to relinquish some control over your child’s care, and be at the mercy of everyone else’s timeline.  I, personally, have to stop trying to plan in my head when things are going to happen, when if I learn to do this, I will be less disappointed when things don’t go “according to plan”.  This morning Lucy woke early with telll tail signs of a fever, high heart rates, sick eyes, and temp of 101.  Lucy’s culture’s from yesterday and they day before, if I forgot to mention it, are positive for gram positive cocci.  The hope is that it is the same weird bacteria, because if it is we are well on our way to treating it.  Dr. R is not sure, but he said he wouldn’t be surprised if she is growing something else…ugh.    The other thing he mentioned is that she will not be getting a new line this week, which means our stay at the hotel DuPont has just tacked on another weekend. Oh, and we are officially on isolation until we get discharged.  What a way to start your day.

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Our little love bug is not feeling well this morning, I really hate it when they are sick.  Prayers for her health and my sanity would be very much appreciated.

Tuesday, February 22, 2011

It’s in…

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Lucy’s new temporary line is in her neck, her right subclavian to be exact.  The entire procedure went smoothly, anesthesia was able to administer some Propofol to her bedside before taking her back which made the transition from mommy to the operating room very smooth.  I love that the staff here try to make things smooth and easy. 

While Lucy was in the OR Drew and I went to the cafeteria to have lunch, it felt like time went by ever… so…slowly.  I believe that every few minutes either he or I would look up to see what time it was.  After about an hour, we decided to go back up and wait for our girly.  While on our way upstairs the power in the entire hospital went out, not just once but three times.  When your little one is in the OR and the power goes out, that just adds more stress to an already stressful situation.   Of course the OR is backed up with generators.

Once Lucy was in recovery and woke up lets just say she woke up on the wrong side of the bed, she was thrashing all over the place.  It felt like we were playing a game of keep away for a while, she would go one way and I would try and catch her and then she would go another.  She was in pain and kept trying to pull her new line out of her neck.  She was given several doses of morphine which eventually settled her, and after some time we came back to our room.  Daddy beat us upstairs, as he had a difficult time seeing his girly in pain with a line coming out of her neck, he needed to lie down.  Lucy had some issues with nausea and vomiting this afternoon, but once she fell asleep, things settled, and she woke up from her nap feeling much better.

Tomorrow Lucy is scheduled to have a new GJ-tube placed, not because this one is out of position but because we are afraid that the bacteria could be stuck to the tube and we don’t want to take any chances with reinfection.  We started Lucy on oral vancomycin to treat the c-diff, oral nystatin to treat the yeast that is growing in her bowels, and IV ampicillin to treat the bacteria that grew in her line.  Her white bile is back, and we are going to send that off for culture just to see what is in it. 

I think that’s all that has happened around here today… that’s enough for one day, don’t you think.

Where is Lucy?…

Lucy is currently in the OR  getting her old line pulled and a new temporary femoral, or sort of femoral, line placed. The surgeon placing the line is the surgeon who Dr. R has been consulting with about possible options for bowel surgery for our little one.  It was a pleasure to meet him finally today.  He told us that he is going to place Lucy’s temporary double lumen line in her neck instead of her groin area.  This is because the risk of infection will be lower if the lumens are not hanging out near her diaper area.  Please say a prayer that they are able to find access easily and that Lucy does well.  I will update later…

Change of Plans…

Dr. R came in this morning to tell me that Lucy’s blood culture from yesterday was positive for gram positive bacteria.  This changes our plans for pulling and placing her line today.  We need to have two or more negative cultures in a row to place a new line.  The new plan is still to go to the OR sometime today and have her old line pulled. We will have a temporary femoral line placed instead  because Lucy needs to have reliable IV access to keep her alive.  There is a risk that the femoral line could get infected with the bacteria, but we really have no other options for access for our girl.  Once we get two or more negative cultures in a row, then we can go ahead and schedule Lucy for a new double lumen central line.  This is so not the news I wanted to wake up to this morning.  I was seeing the light at the end of this tunnel last night. 

Monday, February 21, 2011

What can we say, our girl is unique…

We found out the specific bacteria Lucy has growing in her line, it’s a weird one, one she grew out a few weeks ago but we seriously thought it was a contaminant as our doc and none of the other docs on his team have ever seen it before.  Dr. R came in late this morning and asked Lucy for all of her lotions and potions that she loves to smell, he was kind of on a wild goose chase of sorts, reading all of the ingredients in her various lip glosses and hand sanitizers.   The bacteria that Lucy grew can be a by product of a chemical that they use in the manufacture of cosmetics, it is also a bacteria found in sauerkraut.  Like I said, it’s weird.  What we didn’t know this morning is that the bacteria is not considered part of our normal flora but can been found in gastric fluid and our gastrointestinal systems.  After doing some research and discussing this very strange yet interesting finding out with the infectious disease doc, we learned that the bacteria is indeed a bowel bacteria, but it is not a good bowel bacteria.  The reason that Lucy is growing this bacteria in her line is because her bowel walls are deteriorating, leaching this bacteria into her blood system, which is causing her infections.  One of the surprising things about this bacteria is that it is resistant to Vancomycin, the broad spectrum antibiotic we use to treat gram positive infections.  Dr. R switched Lucy to ampicillin every four hours to treat the bacteria. Yikes, there goes any hope of getting a good nights sleep for the next two weeks!  Knowing how much I enjoy researching all there is to know about Lucy’s issues, Dr. R brought me an interesting case study to read about patients with short bowel syndrome who had the same infection as Lucy has.  Although Lucy is not diagnosed with short bowel syndrome, Dr. R describes her to be very similar to a patient with short bowel syndrome.  What has us all scarred, how are we going to control the spread of bacteria into her blood system as it is apparent that her GI system is failing?  This unknown, leaves me feeling queasy.

Due to the uniqueness of the bacteria, the fact that we have grown the same bug twice in the last month, and the fact that Lucy’s line has been repaired three times also in the last month, we are going to be pulling and replacing Lucy’s central line.  Our need for more access is here, so we are going to be putting in a double lumen Broviac line vs. the single lumen Broviac line that she has currently.  We are an add on for tomorrows surgery schedule, which means we may or may not get a time tomorrow,  we’ll just have to wait and see what tomorrow brings. 

We are still on isolation because Lucy is positive for c-diff.  Umm, yes, we are going a little crazy staring at the same four walls, but on the positive we do have a nice view out of our window.  Dr.R is not sure we will ever be able to get rid of the c-diff since Lucy really has no good bacteria in her GI tract and her need for continual antibiotics is just that, a need.  We are working on a plan to keep Lucy on a regimen of various antibiotics to keep the bugs at bay and hopefully keep the c-diff to a minimum. 

My parents and the kids came by this afternoon to see us, and Drew came this morning and then again this evening.  I miss being all together as a family, if I think about it too much I get so homesick it makes it worse, not better.  I am so grateful for the time I do get to spend with Lucy.  Her birthday is coming up soon, so she and I have been talking about all the things that she wants to do for her birthday.  Umm, does anyone know how we can bring the circus, Disney World, and a fourth of July fireworks show to our home on March 12th, as that is what she wants for her birthday? 

We have had some wonderful visitors the past couple of days and we want to thank you for taking the time to be with us, we loved spending time with you.  It made our very long days here seem shorter.  We also want to thank you for your thoughts and prayers, love and support, like I said yesterday we really couldn’t do this alone.  

Sunday, February 20, 2011

Not much new…

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Really, there’s not that much to report on today.  Lucy’s repair/splint on her line is holding and tomorrow we will have to decide what we are going to do with the line.  The susceptibilities are not back yet, which means we still don’t know what type of gram positive bug we are dealing with.  Hopefully we will know this tomorrow. 

Lucy’s belly is hurting her more tonight, she has had a lot of diarrhea diapers this evening, but none of them have been substantial…sorry, too much info… hey I’m just reporting the news here.  The minute we put her meds into her J-tube she starts complaining that her belly hurts.  We have only a few meds that we put into her J-tube as we have converted as many of her meds to IV meds as possible.  All of the antibiotics combined with the c-diff is reeking havoc on our little girls system.  I wish we could give her something for her discomfort.

Drew is at home with the kids tonight while I again work the night shift.  My parents arrived tonight after leaving Wisconsin last night just ahead of the huge storm that blanketed the state today.  They decided to forego their ski vacation and come out and help us with the kids, really I’m not sure I would hove done that, but they did and we love them for it.  We appreciate all of the love and support, thoughts and prayers being said for our family.  We really couldn’t do this alone! 

Here’s hoping that she does this ALL night!

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Saturday, February 19, 2011

Just passing some time…

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It looks like we are pulling our hair out…we’re not…yet.

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In order to pass some time this evening I allowed/caved/gave in/became desperate for something to let Lucy do in her bed so I gave her a pink bucket and some tiny bottles of lotion, shampoo, and conditioner to squeeze into the bucket and smear around.P2197738

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She was having great time smearing, which turned into a sudden urge to wash her own hair,without water I should add. P2197725

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  The fun suddenly stopped when she rubbed shampoo in her eyes. 

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I guess I should have given her tear free shampoo.

She’s alright, we just added a little water to our mix and the fun just kept on going.

No she didn’t…

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Yes, she did…Lucy tested positive for c-diff.   I admit I was a little surprised and disappointed to learn this, but considering the amount of antibiotics she has been on in just the last month and her recent hospitalizations I really shouldn’t be.  As a result of this we are in isolation, we can’t leave our room but we can have visitors (hint hint), they will retest her again on Monday…UGH!  Lucy’s line culture from yesterday was positive again for the same gram positive bugs she grew on day one.  The susceptibilities are not back so we don’t know exactly what type of gram positive bacteria it is, Dr. R suspects that it is a bowel bacteria.  We need to have two negative cultures in a row to consider our options.

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IV team repaired Lucy’s line yesterday afternoon with some very stinky super glue and rubber tubing.  The first attempt at this did not hold, so last night a second attempt was made to repair her line.  For those of you counting, this makes three repairs on a line the size of angel hair pasta in the last month!  Saying that we are a little nervous about the integrity of Lucy’s life line would be a huge understatement!  I know access is a major concern but in my opinion this line has got to go!  I know this is a conversation that we will be having with Dr. R on Monday.

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We  stopped all enteral feeds on Wednesday due to increased belly pain, and because there is some concern that Lucy’s j-tube is migrating out of position…again.  One of the residents came in to tell me the “bad”news yesterday and then proceeded to explain to me what the scan looked like and all… blah…blah…blah.  I was in kind of a mood yesterday, so I just let the the resident talk to me like this was novel.  When she was done I agreed to a dye study, I think in part because we could get out of our room for a bit, but then proceeded to tell her that if we waited another day or so there would be no need for a study as we can conduct our own study when we push her meds into her j and watch and see if they come pouring out into her bile bag, you know like the last seven times this has happened.

Helen came last night and visited with our girly so that I could take a break and have a change of scenery.  Drew came over after work and we were able to get a bite to eat together while Helen stayed with Lucy.  We love you Helen, and can’t thank you enough for all that you do!  

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I was in a mood all day yesterday mainly, or partly, because I was exhausted.  I kept telling Drew last night that I will be a better person after I get a good nights sleep (my definition of a good night is 5 hours in a row).  Sleep was not in our cards last night, Lucy’s line repair was not done until 10:00, then meds, multiple diarrhea diaper changes, labs, more meds, multiple sheet changes, numerous alarms for occluded lines, and one little girl who played house in her crib all night.  She finally fell a sleep for the night at 6 AM!  I learned this morning, just before they dosed her meds, that someone wrote the wrong orders in the system for Lucy’s CoQ10 dosing, it was written for twice the amount that she normally receives.  CoQ10 is a medicine that increases metabolism, mito patients get a special supped up formula of CoQ because of the unique way the medication gets absorbed.  That error may explain our night, but with Lucy who knows.

Today is another day, and really we are just waiting to see what if anything grows in today’s cultures.  Drew and the kids are on their way over. 

Friday, February 18, 2011

Gram Positives So Early in the Morning…

A nap is most definitely in store for Lucy and me today!  We had a late night and several interruptions in our sleep that made morning come way too soon.  I learned early this morning that Lucy’s cultures are growing gram positive bugs.  This is most likely the source of her fevers.  Somebody ordered stool cultures to rule out c-diff so we are still on isolation until we get the all clear on that.  Dr. R told me that he was not the one who order the test so don’t be mad at him.   We, as in Dr. R and I, do not believe that Lucy has c-diff, but what can I do.  Despite being tired, one of the best ways to pass our time, and keep us from loosing our minds while we wait for bacteria to grow, is to go for walks around the hospital so we can visit all of our aquarium friends and any other friends that we happen to see in the halls.  When you are here as often as we have been you get to know quite a few people.  Hopefully we will be able to get out later today.

Lucy’s line is in need of repair, and that is what we are going to do with it for the time being.  IV team is going to come and take a look at it soon.  Dr. R told me that his threshold for keeping this line is very low, but he wants to fix it in the meantime to avoid any scary access issues that will arise if we pull the line today.  Again he shared with me his concerns for running out of access with Lucy, I hate talking about that.  Lucy is still not feeling like the Lucy we know and love, but her spirits are high and that makes us all happy.  On the positive her urine came back clean, which is good news considering the massive UTI she had a few weeks ago.

Since we are here, we are taking care of some medical business that is on our medical to do list.  Lucy has outgrown her leg braces thanks to all of the fat and calories she has been receiving in her TPN.  We had a PT consult this morning, and we are going to have Lucy measured and casted for new leg braces sometime this afternoon.  Since we have some lab work that needs to be sent to Atlanta for testing, Dr. R put in orders for that to be done.   If we are still here on Monday then that is when that will have to happen as the blood needs to be delivered during the work week not a weekend.  I handed Dr. R the transition paper work that he needs to complete for Lucy’s transition from the Early Intervention Program to our county’s intermediate unit (therapy coverage for children ages 3 to5).  Lucy is going to be turning three is just three short weeks, what a blessing!

The big kids are in school today, and are tired because we had one late night last night.  Sophie is with a few of our friends today, Drew is at work, and Lucy and I are holding our own here. Hopefully we can all be together tonight or tomorrow.

A three ring circus…literally

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(Sick eyes)

What a day we had…Lucy continues to be febrile, with a persistent average temp of about 38 degrees Celsius, the cut off for our fever threshold.  We arrived at the ED this morning and started with the usual protocol for fevers in kids with a central line; two different IV antibiotics, one to cover gram negative bacteria and another to cover gram positive bacteria.  Dr. R came down and saw us, put in some orders, and then told us to be patient, he was not going to speculate about anything.  He knows and harasses me about my need to have a plan, often joking that he is married to planner so he gets me.  He is much more patient when it comes to the medical unknown than I, deep down I really do appreciate that about him, but on days like today I sometimes wish he would give me something.  He did tell me who was on for the weekend, which is his way of saying you are going to be here for at least that long. 

This is a bad time of year to be in the hospital, all of the sickies are here, which means that we had to wait a while for a bed to open up on “our” floor, the floor that we always get admitted on.  We lucked out, or I guess another way to say it is that we are on isolation, and scored ourselves a private room with a view.  In fact we are next door to the room that Lucy affectionately calls hers, the room that we spent a lot of time in last fall.  Although we do not wish to be here, we are happy to be on this floor where we know and love most of the nurses.

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(The kids brought Lucy back a clown wig from the circus since she was unable to go with us…she is not quite sure what to make of it.)

I did not write about it but I did say to several people just yesterday, we had one glorious week last week  in which we did not have a clinic appointment or an urgent medical need to come to the hospital.  It was so nice, but the weather today and tomorrow is even nicer and now we are stuck here on isolation until we know more what is going on with our little one.  I also spoke too soon last night when I told the kids that we had a special surprise for them after school today, tickets to see the circus.  Imagine their disappointment this morning when they learned that Lucy was getting admitted.  After a lot of discussions and encouragement from my husband and Dr. R I decided to continue on with our plans to see the circus.  Drew stayed with Lucy while the kids and I ventured to Phily for the show.  FYI, a three ring circus is not exactly the best way to end a very stressful and exhausting day, oh the irony.

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When I came back to the hospital tonight, I learned that Lucy’s central line is cracked.  In the morning we will need to discuss with Dr. R what his thoughts are about this.  As for tonight, the line was redressed, and taped together.  Please say a prayer that it holds as I don’t even want to imagine what would happen if we loose access tonight.  It is always better to plan a line placement than to have to do something on an urgent basis.

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(Apparently Lucy’s dolly Lucy lost her line tonight as well, Lucy is going to tell Dr. R in the morning about this.)

Thanks as always for all of the love and support, thoughts and prayers.  No matter how routine all of this seems, it is oh so difficult to live life as a family this way.  Please say an extra prayer for our kiddos that they have the strength and understanding to get through another admit.   

Thursday, February 17, 2011

Fevers…

Here we go again… Lucy started getting a fever last night when we put her to bed.  We were teetering on the edge of do we go in or should we wait last night.  Early this morning her fever was on the rise.  We contacted our main doc and we are on our way to DuPont ED.  I will update when we know more.

As for the blue food, it never showed up in her bile bag.  Not really sure yet what caused the white bile but we are back to green and yellow.

Wednesday, February 9, 2011

Blue Food…

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What do you get when you mix blue food with white bile?  I don’t know, but I’ll tell you in the morning.  Lucy has gone and done it again…that is she is taking the road less traveled.  Lucy’s gastric output, the stuff that drains continuously from her g-tube into her bile bag, changed from being a typical yellowish green color to white, literally overnight last Thursday.

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For those of you not well versed in the spectrum of colors that can come from your stomach bile, it ranges from a very light yellow, to green, to a very swampy mossy green which is sometimes referred to as the infamous black bile.  White bile is not a typical color that drains from the stomach, according to Dr. R even normal stomach acid is yellow even without bile.  Lucy’s volume of output is the same as it usually is, anywhere between 350-425 mls daily, this is her norm, we realize that this is a lot of fluid volume lost, but fear not her TPN is car fully formulated to make up for the fluid loss.

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This is more typical of what we see every two weeks or so when her SBBO takes over.

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This mystery has a lot of us stumped.  Lucy has had a lot going on with her little body, that’s understatement, who knows what one or many things could be causing this.  Last Thursday we had yet another GJ-tube placed, the seventh one in two months for those of you who are keeping count.  This is absurd, we realize this too, but for the moment we have very few options but to keep replacing them when they migrate out of her intestines.  We started Lucy back on J-tube feeds Thursday night after being off of feeds for a little over a week.  This is when her bile suddenly changed color.  

I do believe that her J-tube is in position, because if it were not than I would be seeing her bright yellow meds come pouring out her drainage bag, and also she would be complaining that her “berry hurts”, as she can not tolerate even the smallest volume of anything in her stomach.  Just for fun, Dr. R wanted us to die her food to see if we detect any of it in her bile bag in the morning.  I am pretty sure we will not, but it is definitely worth trying.

We are suspicious that there is something going on with biliary system, we just don’t know what.  Possibly something with her liver or gallbladder, or even her pancreas.  What is reassuring is that she does not appear to be in any distress, sure she complains of stomach pains off and on, but nothing out of the ordinary. Her weekly labs were not very telling, there were a few things that have us wondering, but nothing so obvious that we can say for sure what is causing this. What we all agree, this is NOT normal... normal is so boring! 

Well keep you posted…

Monday, February 7, 2011

Way behind…

…that is in updating the old blog.  A friend told me that she knows that I will update when we are in the hospital for obvious reasons, but once we are home she worries because she knows that things are constantly occurring in our home but I don’t  blog about them.   Sad but true, I have the time to blog when Lucy is in the hospital, when at home everything and then some needs my attention.  In an effort to cover some ground I am going to resort to a random list format post…I apologize in advance for the randomness of my thoughts.

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Praise the Super Bowl, ok not really, except that it was a wonderful distraction to all of the stress in our life this year.  Drew, and I suppose the entire state of Wisconsin, are walking around today feeling oh so happy about last nights victory over the Pittsburg Steelers.  Drew especially, since you know we live the great state of PA and…well…we have had to deal with Steelers, and lets not forget Eagles, fans razzing our team for quite some time.  Drew dressed our kids this morning in Packer apparel telling them to, “wear it with pride”. Umm… yes you read that correctly Drew dressed the kids, which by the way is not his thing, as he has a difficult time picking out clothes for himself that match.

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Jack and I had a rare opportunity to get out together on Saturday afternoon, just the two of us.  It wasn’t a planned event, just an impromptu outing, I had errands that I needed to run and he wanted to come along.   This was so unlike Jack as he hates to go shopping, and in all honesty I hate to bring him shopping.  Jack discovered that he likes the Christmas Tree Shop…really!  He told me that I should bring Megan and Sophie there sometime, because in his words, “they would go crazy with all of the stuff for not just Christmas there.”  I LOVE that he thought about his sisters on an afternoon that it was just us.  I had fun talking with him about some of the things on the mind of a ten year old boy.  On several occasions that evening, Jack  would say, “Whas up?”…me, “huh?”.  The first time he said it I tried not to laugh, the second time I said the same thing back to him to which he smiled at me and said,  “Mom is that disrespectful to say?”.  So grown up, yet still so young…be still my aching mommy heart.

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Megan is as darling as ever….um,yes I am totally biased, but really if you asked anyone they would probably say the same thing about our girl.  Megan has become Lucy’s favorite playmate as of late, because unlike Sophie, Megan is a little more accommodating to Lucy’s wants and desires (I am choosing my words carefully).  The girls spend hours, no joke, playing “hospital” with all of the excess, surplus, repurposed, copyus amount medical supplies we have around our home.  Often when I go to pick Lucy up I am not sure what tube is attached to her dolly and what is actually attached to her, it makes it all the more challenging to pick her up.  What can I say, play imitating real life. 

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Sophie is the same… inquisitive,independent yet needy, so sweet yet so stubborn,  little love bug.  She has been spending a lot of time mass producing  making Valentine cards for all those she knows and loves in her life, or maybe they are just for those she knows, we have a lot of cards.

Drew and I have some difficult medical decisions that need to be made for Lucy weighing heavy on our minds.  We had a challenging, albeit productive appointment with the motility specialist at CHOP, Dr. B, last week which prompted some communication between Dr. B and Dr. R.  The communication between the doctors was good, the conclusions were not.  I am not going to dive into the details about it just yet because I am in need of some more information before I write about it.  I just wanted to share with you that we are struggling with what to do, and the feelings that accompany such difficult decisions.