Thursday…

I am at the point in this admission where I just want to go home…I have found, for me, that there is that point in every admission where you just want to go home, today I hit that point.  I remember Dr. R telling me last year that you need to take a break from here in order to make it through a longer than a week admission, he has no scientific proof of his theory, just a lot of personal experience.  My break has come in the form of friendship and support from some fellow mito moms and the wonderful nursing staff that take care of us while we are here…I just love it when God places the right people in your life at just the right time.

We learned today that Lucy’s allergic reaction to Vancomycin, the antibiotic we are using to treat Lucy’s infection, increased.  She has become more sensitive to the med than she used to be, and developed a more severe case of red man’s syndrome.  Her heart rates and blood pressures were elevated, she turned a blotchy bright red, and she began aspirating her saliva all in a matter of minutes of administering the med…here I have been thinking that she just looked rosie from her blood transfusion.  In addition to IV  Benadryl, we added IV Tylenol to treat the red mans as well as slow down the already slow infusion rate to run over two and a half hours.   Nobody knows why exactly the Tylenol helps to counteract the red mans, but it is helping. 

We are on “auto pilot”  until Monday according to Dr. R.  We are scheduled in surgery Monday afternoon, that is if Lucy’s cultures are negative…so far no growth.  Dr. R signed out for the next week as he is off to Haiti for a medical missions trip…when he left he gave orders to Lucy to “behave”. 

Drew and I are working on trying to rearrange our beach vacation…we really need to get away!  Hopefully, we can figure something out, we have not told the kids yet that we are not going this weekend…I don’t want to tell them until we have plans B through Z in place. 

Thank you for all of your thoughts and prayers, love and support.   We could not do this alone!

All of our ducks fell out of our row…

We  went down to the OR around 1:30 this afternoon.  The surgeon who pulled Lucy’s infected line and placed Lucy’s temporary femoral line was the infamous Dr. K, who has a reputation for being an amazing surgeon with a great bedside manor.  He also happened to be the one to tell me that there is no way he is going to place a more permanent central line in Lucy on Friday, but he would put her on his schedule for Monday afternoon.  What!?!   He thought Dr. R was going to tell me this, apparently something got lost in translation as I did not get this message  yesterday when I asked Dr. R about a possible discharge on Friday.  Dr. R told me that if I want to go to the beach I should go with him to Haiti this weekend…umm no thank you, I  have a different beach in mind.  Dr. K’s reasoning behind not placing a line in Lucy until Monday is that the risk of reinfection is too great, if we place a new line too soon we run the risk of the bacteria sticking to the new line and then we are right back where we started. 

To add insult to injury while Lucy was in the OR there was an urgent need for an isolation room as the hospital is full and they need to find places to put patients.   Long story short… Lucy and I lost our private room as she is technically not on isolation, but is severely immune compromised and can not be around other “sick” kids.  They moved us out of our room while we were waiting for Lucy to come out of the OR.  The nurses on our floor were mortified that the head nursing supervisor made this decision and have been very apologetic and sympathetic to us.  They placed Lucy in a room with a child who is of no risk to Lucy’s health and are going to work at finding her a private room just as soon as one becomes available.  We work so hard to protect our girl from germs because we have been told that we have to…oh the irony.   

As for Lucy’s procedure, her old line was removed without any problems; however, her femoral line did not go in as easily.  Dr. K  came out of the OR telling us that Lucy is “a pain to try and put a line into”.  Which confirmed to him even more that we need to try and preserve every line that we put in our girl.  He apologized to us for the mess he made on her legs, two lines broke and multiple attempts were made before he was successfully able to place a line.  Lucy woke from anesthesia  easily and was less grumpy than usual, a bright side to our day.  She even let me rock her for a few minutes before asking to lay down in her bed.

When we came back upstairs we learned that another mito buddy was admitted on the unit.  Three of Dr. R’s mito kids are on the floor, all three of them are affectionately referred to as the three musketeers down in urology, they are calling them the three amigos up here on the floor.  If we have to be here it is nice to have the company of others who know how it feels to be living with mito… even though I would never wish this disease on anyone.

Rosie Cheeks…

On our agenda today was a bath and blood…not a blood  bath, just to be clear.  Lucy was originally scheduled to be transfused in day med today, but since we are currently in-patient we transfused her from the comforts of her hospital crib.  Her skin now has a pinkish glow and her cheeks are rosie red…she looks so warm and beautiful, and she smells good too. 

This morning we woke to negative cultures only to learn ten minutes later that her cultures were indeed positive, and so began the game of trying to get an OR time slot.  We were unable to get an add on time slot today, but we are on the OR schedule (not an add on, we are actually on the schedule) for tomorrow… we just don’t have a time yet.   I, of course, am counting down the days until our beach vacation…if we pull the line tomorrow, then we wait two days for negative cultures, then put in a new line on Friday, we could be discharged in time to leave  for the beach on Saturday.  Of course, all of this is contingent on Miss Lucy behaving, cultures not growing in the next two days, and surgery having an OR time slot on Friday to place her new line.  For a mama who has her days planned down to the minute on most days, these are the moments that I have to trust in the powers that be that all of this is part of a much bigger plan.

My mom is here helping us with the kids  this week.  She came over and had lunch with us  in the new cafeteria, which coincidentally is very much like the old cafeteria, just a different color.  I then spent the better part of my day trying to convince Lucy to take a nap, she was tired since she had only slept three of the last twenty-four hours,  but she could not  fall asleep again.  Eventual, she succumbed to the fatigue and fell asleep ten minutes before her daddy arrived.  She slept the entire time he was here, thankfully we were able to Skype with the kids and daddy just before bedtime…we are missing everyone.

Today…

Today started like many days in the hospital…early!  Lucy has to have labs, labs, and more labs drawn daily for cultures, a CBC, antibiotic levels, and to check her chemistries.  All of this happens somewhere between 3:30 am and 5:50 am…which is early!  I learned from morning rounds that Lucy’s cultures are still positive for the same bacteria, the lumen that was negative yesterday is now positive again and the other lumen continues to remain positive for the bacteria.  Apparently it is a “sticky” bug that doesn’t like to leave.  Dr. R discussed a plan with me today which made me happy…having a plan that is, and not necessarily the plan, just to be clear.  If today’s cultures are still positive, then the plan is to head to the OR sometime tomorrow to have her line pulled and replaced with a temporary femoral line as Lucy’s life depends on reliable access.  We then have to wait two days for negative cultures, if cultures are negative then on Friday she will head back to the OR to have a new permanent line placed just in time for us to go home, pack, and head for the beach!  Darn this child, she always cuts things to the last minute…I wonder who she gets that from.

Our days here have been long.  Sleep is always a challenge, it seems to take a few days to get back on a schedule.  Entertaining Lucy is also a challenge.  Her attention span has been short, not unlike most toddlers, but she is unlike most toddlers and is confined to a bed and connected to machines with a half dozen lines coming off her body.  She and I are going a little stir crazy staring at the same four walls, we have plans to head downstairs tonight to the PACU waiting area and visit the fountains.  During this admission we have some fellow mito friends who are staying in the room next to ours, it has been nice to have someone else to talk to who “gets it”.  Please keep Wyatt in your prayers as he is battling yeast in his line making him one very sick kiddo.

I feel a little guilty saying this, but it has been a bit of a break for me having all of the nurses on the floor taking care of the numerous daily medical needs for Lucy.   They keep telling me that it is a break for them having a mom who is so involved in their child’s care,  I guess you could say it is a win win all the way around.  Lucy has a pretty grueling med schedule, currently she has sixteen IV med infusions daily in addition to j-tube meds,  and an every three to four hour cathing schedule, she is the definition of high maintenance!

I miss Drew and the kids, we were unable to see them today as our Monday schedule is pretty full without adding a visit to the hospital in the evening.  Hopefully tomorrow we will be able to eat dinner together, the newly remodeled cafeteria reopens tomorrow for the first time in nearly two months.  We are definitely going to have to check it out. 

Thanks as always for your thoughts and prayers, love and support, it means so much!

So far still positive…

By positive, I mean Lucy’s cultures.  We are continuing with the current antibiotics because in theory they should be able to kill the bacteria identified in her line.  Of course with Lucy, everyone knows that she likes to take the road less traveled.  Despite this quality about our daughter, I too am going to remain positive that we are on the right track. 

Lucy continues to remain stable.  Her labs look “ok”, with the expectation of her usual awful lab values.  She looks puffy, but then again that seems to be more her norm as of the last six months.  Her albumin levels were critically low, so this afternoon an infusion of albumin was ordered.  Here’s hoping that with the extra protein on board that we can pull off some of the excess fluid in our girl.  The albumin combined with a very high does of lasix should help to make a difference…that is if Lucy’s body chooses to respond.

Drew and the kids were here this afternoon.  I took the big kids out for lunch while Drew and Lucy spent some quality time together.  After lunch we ran a few errands and then came back to to the hospital where our friend Alicia came and picked up the big kids and took them back to her house so that Drew and I could spend some time together..foreign concept these days.  We were able to watch the Packer game together all the while talking about how we are going to schedule the next few days.  

We still have our eyes set on sunny skies, ocean waves, and sand in between our toes…here’s hoping we are out of here soon so that we can make this a reality. 

Thanks for all of your thoughts and prayers, love and support, we could not do this alone.   

PS  I found my camera cord and will post pictures again soon… in case you were wondering where our kids have gone .

Admission…

I may not have made it very clear in my last post, positive cultures mean that we absolutely positively have to be admitted…ugh!  I will be the first to admit that when I received word that Lucy’s cultures came back positive I acted like a big baby about having to come in on a Friday night.  I know, not very, mature, but I was not prepared mentally for an admission last night…I was ready to crawl under the covers of my own bed and go to sleep after the loooonnnggg week that we had.   I put on my big girl panties so to speak and quickly made arrangements for the other kids, dressed them in their pajamas, grabbed our suitcase which I had packed from our earlier trip to the ED, and we headed out.  We arrived at the ED around 10, they were expecting us and even had all of Lucy’s bands ready for her including her allergy band which simply read, “see list exclamation mark”.  By the time we were brought up to our usual floor and went through the usual protocols it was well past 3:00am.  Drew stayed with Lucy and I until we came upstairs and then went home to catch some zzz’s so that he could be the designated driver for the girls first dance classes of the season this morning.

Medically speaking,  it was an uneventful night which was just fine with me.  Sure we had a lot of meding, cathing, labs, and a dressing change to do, but Lucy was stable for which we were all thankful.  Sleep was not in the cards last night, but hopefully in the cards this afternoon.  We learned shortly after arriving at the ED that both blood cultures  from Lucy’s line grew gram positive bacteria.  In our eyes, this means that the likelihood of it being a contaminate and not an actual infection is decreased.

Dr. R came in this morning afraid of the mood I was going to be in,  it’s not his fault but he knows and understands the challenges that come along with ALL of this.   We know the drill, we need two negative cultures in a row before we can even talk about going home.  We  also we need to identify the specific bug(s) that Lucy is growing so that we can get her on the correct antibiotics.   All of this is trying on one’s patience… Of course we have plans in six days that may or may not  include  the ocean, sand, and some quality family time. As we know all too well, Lucy has a tendency to make plans of her own.

A Rollercoaster…

Recently we had an opportunity to take all of our kiddos to Hershey Park, a local amusement park, famous for the smell of chocolate in the air and roller coasters, lots of them.  Drew, Jack, and occasionally Megan and Sophie took advantage of as many of the rides as possible, Lucy and I rode the handicap accessible train over and over with the occasional carousel ride thrown in for variety.  Drew kept asking me if I wanted to trade places with him so that I could ride a roller coaster or two.  No thank you, our life is enough of a roller coaster ride for me .

Last weekend we participated in the DelVal 2nd Annual Energy for Life Walkathon…a high.  On Sunday we had issues with Lucy’s CVL (central line) which lets just say caused me to want to throw her pumps out the window…a low.  One Monday, one of the lumens on her line stopped working all together causing us to spend most of Monday at the hospital doing dye studies, consulting with surgery, tracking down Dr. R, and eventually landing in day med clot busting her line…another low.  On Tuesday morning Lucy started back with music.  She did better than I expected as did I…a high.  Therapy was a bit of struggle this week as it is becoming more and more obvious that our girl is just not able to tolerate as many of the activities that she once did…a low.  One Thursday morning I received a call from Lucy’s cardiologist that her holter monitor from last week came back showing ventricular tachycardia.  Lucy is going to need to wear an event monitor for the next month to get a better picture of what precisely is going on with her heart…major low.  We had a productive appointment with Dr. R Thursday afternoon…I guess you could call it a high.  He discussed some options for our girl that are not necessarily what a mama wants to think about…a low.  Last night Lucy woke with a fever, which landed us in the ED for most of the day…definite low!  We drew cultures and Dr. R gave her a round of antibiotics and sent us home, telling us that he would call if anything grew …a high cause we did not automatically get admitted.   Tonight we had dinner and movie night with our kids while Lucy slept…a high.  After dinner Dr. R sent me an e-mail that Lucy’s cultures are positive…a big time low.

We are currently on our way back to DuPont for the seventh time this week!   I would like to get off this ride please… I will update more when we know more.

Less than a week away…

The second annual Energy for Life Walkathon is this Saturday!  We want to thank all of you who have registered to walk, donated, or participated in a “For the Love of Lucy” fundraiser!  Your support, care, compassion, thoughts, prayers, love, friendships, loyalty, and dedication to helping a cause that is so near and dear to our hearts is quite simply…amazing!  We appreciate each and every one of you and want to thank you for all that you do, we could never do this alone!

That being said, if you have not yet registered or donated to our team “For the Love of Lucy” it’s not too late!  Click on the link in this post or over on our left side bar, and click on the yellow  join our team button or donate button and follow the directions on the website.   Help us to reach our goal of raising $10, 000 for mitochondrial research.  We are well on our way to doing this, but are not there yet.

The Energy for Life Walkathon is a pledge based walk, there is no fee to walk, you collect pledges or donations for walking.   It is the hope of the UMDF that by organizing the walk this way we will raise more money for mitochondrial disease as well as awareness as we explain to others why we are walking. 

If you ordered a For the Love of Lucy t-shirt, orders are in and can be picked up at our house or arranged to be delivered if I just happen to be in your neck of the woods within the next few day.  If you are one of our beloved supporters across the country who ordered a shirt, I will be contacting you via e-mail in the next few days to exchange addresses so that we can exchange goods.

Thanks as always for your love and support, thoughts and prayers…they mean so much!! 

Where I last left you…

Least you think we blew away during hurricane Irene, we did not.  We didn’t even loose power for more than a few minutes.  We weathered the storm with minimal damage, thankfully!  Lots of rain and heavy winds caused some flooding and streets to be covered in debris, as a result the first day of school had to be delayed by one day.  After some disappointment, we embraced the extra day of summer vacation and prepped for the first day of school Monday night.

Tuesday Morning everyone was up bright and early, and by everyone I mean Lucy too, in fact she was the first to wake at 4:45 am.  I noticed that her j-tube drainage was less than it was 24 hours prior, and also that her g-tube drainage had doubled in volume, my guess…her j-tube had migrated out again most likely causing her to be uncomfortable.  We were all  a little rusty when it came to the early morning routine, having Lucy awake made it even more challenging.  Scrambling around the kitchen, packing lunches, making breakfast, listening to Lucy cry because she wanted to smell everything we were making for the kids, packing backpacks, finding shoes that fit because flip flops are not appropriate footwear for school, brushing hair and teeth, and then lining them all up on the front porch for the infamous first day of school picture…I was tired and it was only 7:50am.  As the school bus pulled up in front of our house the kids ran off. I kissed them all and told them to “study hard”(memories from my childhood).   I yelled to Sophie to be good and to have a great first day of kindergarten, she turned around and shined me her “I’ve got it Mom smile” and then gave me a thumbs up.  Drew, Lucy and I waved to the kids from the front porch.  There was a kind of silence between us that morning, if spoken it would have expressed a sadness.  A sadness that our kids are growing up just as fast as everyone said they would,  but also a sadness that our baby may not grow up and live long enough to experience her first day of kindergarten.  These feelings manifested themselves in other ways and the stress of the morning came out in, lets just say,  not so nice ways as Drew and I said our good-byes that morning.  It was later in the day, when my mom called to ask how things were going, that I realized what Drew and I were “really” feeling and suddenly I started crying.  We try so hard to focus on the here and now, the positives in our life, and the blessings we have been giving…we love our life, even though it is full of challenges that are out of the ordinary…abnormal…down right difficult.  This can make feeling what we are “really” feeling difficult to express at times.

The kids all arrived home from school full of stories from their first days of school.  Sophie and Megan were thrilled about everything,  Jack had a look of fear on his face when describing his first day.  Jack has been blessed(although I think he would choose another word to describe it) with a very experienced, firm, authoritative type teacher.  I think he is going to learn a lot from her and she in turn will learn a lot from Jack.  As a mama it is always difficult to stand at the edge and watch your children learn to take flight as they realize the potential of their wing span…Jack is going to soar ,we know it, he just needs a little nudging! 

Wednesday morning went a little smoother even with Lucy awake.  She again woke early, before the kids, complaining of belly pain.  I called IR first thing Wednesday morning after e-mailing Dr. R on Tuesday, to see if they could get her in anytime after noon as I had to be home to get Sophie off of the bus before hand.  IR was booked solid all day and could not squeeze Lucy in until Thursday morning at nine.  Knowing that Lucy would most likely be awake at the crack of dawn, I agreed to the early morning time slot and felt more confident that if we could fix whatever problem she was having with her tube that she might just feel better and in turn sleep better.  Lucy’s tube was found to still be in position(yeah for Lucy!) but had an obstruction somewhere causing it to stop draining.  We went ahead and replaced her tube, which by the way only took ten minutes because  we could just thread the guide wire through her old tube and pull and replace it with a new one, once connected to drainage her j-tube  poured out over 200mls of bile…poor baby.  Lucy has been sleeping better since getting her new tubie,  I wish I had pushed harder to get it looked at sooner.

We are working at getting back into the routine of tip-toeing early in the morning so as not to wake the sleeping Lucy and getting dressed for school.  Packing lunches now times three at least two days a week as Sophie is enrolled in an extended day program on Tuesdays and Thursdays.  Daily homework and reading logs that need to be signed and returned the following school day.  Getting used to new daily schedules, therapy schedules, nursing schedules, after school activity schedules, and eating dinner before 7:00pm so that we can have everyone that needs to be on a school bus the next morning in their beds by 8:00pm(this one is proving to be a bit more challenging). 

It is an unusual balance of normal and abnormal that we are both blessed and challenged to live with.