Thursday, November 22, 2012

The Promise of Pittsburgh

After watching yesterday's events unfold, witnessing the kindness of others, I (Jack) felt inspired to write this.  I'm running out of ways to say thank you.   You all have no idea how great it feels to know and see our friends and family take up our cause. It fills us with extraordinary hope and strength.

Neely had been in the hospital since September 20th, 2012.  Five month old Neely has spent less than a month of her life at home.  But she returned home tonight (11/20/2012).  And unless something goes terribly wrong (and yes, that scenario is closer to possible than impossible), she will be home for Thanksgiving.   If Kat and Josh are reading this, I want that to sink in with yall for a bit... Neely will be home for Thanksgiving.  And in spite of the all this madness, trust that we all feel very thankful every day.

On July 5, 2012, it was determined that no part of Neely's intestines functioned properly.   Since July 5, 2012, the only option this family considered was an intestinal transplant, and the optimal place to conduct this fairly new, risky procedure was at the Children's Hospital of Pittsburgh.  Since we found that out, Pittsburgh became the most important city in our lives.  Pittsburgh has almost become this mythical, magical place... a wonderland where Neely could get treated and begin a normal and hopefully somewhat-boring life.  Pittsburgh became Oz, and the Wizards there would give her new intestines.  Everything Kat and Josh and JD have done has been done with Pittsburgh in mind.  It's been the goal to get her healthy enough for Pittsburgh.  Pittsburgh is the light at the end a very long, dark tunnel (and, frankly, who has ever said that about Pittsburgh?)... or rather, Pittsburgh begins a the journey through a more brightly-lit tunnel.  And yet, Pittsburgh has felt so unreachable.  There have been various bumps, peaks, and valleys on the road to Pittsburgh.  On more than one occasion, Neely's evaluation has been rescheduled because of Neely's ongoing health problems and hospitalizations.

Neely is scheduled for evaluation at the Children's Hospital of Pittsburgh on 11/26/2012. It's just an evaluation and not the transplant itself.   But it's an important first step on the road forward.  Everything starts with that evaluation.   We just have to get her there.   Originally, we were supposed to go via Angel Flight.  That had been the plan for the past couple weeks.  Last night we were told that, unfortunately, Angel Flight can not accommodate the 1,400 mile trip.  Insurance wouldn't cover any other type of medical transport since it isn't technically an emergency.  Partially a shot in the dark and partially in jest, Kat asked if anyone had a private jet and could fly them there.  We were shocked and amazed and humbled by the amount of support that came pouring in (and continues to pour in) by this comment.  If you think about it, it's a ridiculous request... and some people really tried to make happen.  And though we settled on a risky, commercial flight (with one stop), we are more than emboldened by your kindness.

Since the day she was born, Neely's had eight surgeries, and she is still smiling. And lordy, it's a great smile. Over the five months, we've dealt with full days worth of bad news. And with the help of our friends, our family, and each other, we are still right here... committed to making this work.  Committed to doing anything in our power to give her the life she deserves.  We are 1400 miles away from our goal, and we will not stop until we get her there.  (Hell, the Proclaimers? Vannessa Carlton? They gave up after a thousand miles.)  Whether it be this Monday, next Monday or in a couple Mondays from now... Plane, helicopter, car or bicycle.  We will hitchhike.  We will crawl.  We will borrow, barter and beg.  But we will get to Pittsburgh. 

An old card from Onkel Jack to Kat

Kat wanted to add pics of just some of the things we are thankful for...

a gift from the chaplain at Dell

the overnight nurses worked on beautiful decorations for Neely's room (thanks Lauren, Michelle, and anyone else who helped!)

poster signed by almost all the wonderful folks on the 3rd floor :)

goodie basket put together for the Lucquetes (even Uncle JD) by sMiles 4 Sammy


awesome pic (taken by Jack) of Josh at the door with sMiles 4 Sammy

P.S. Did not get pics, but thank you Michelle for the delicious pancit and thank you Lindsey for Laney & Neely's presents.  Love and miss you both!

P.P.S We will not hitchhike

Sunday, November 11, 2012

Not the most cohesive update...

It's 2AM on Sunday, but I am going to finish this post today or else!  I have started this about 10 times over the past month and I just can't finish.  We are so busy, it's ridiculous.

Well, first off - Neely is okay.  She is still in the hospital.  She is on an antifungal regimen and is still weaning off of methadone.  Infectious Disease is waiting on test results, trying to figure out if the yeast/fungus is still hanging out in her belly.  We should know these results by mid-week.  If the test shows she is all clear, she will need another (8th?) surgery to replace her Broviac.  This is so she can start off with a brand new and clean central line.  If that goes well and she recovers with no issues, we will be discharged.  Then, we have to have a follow-up appointment with GI before we fly to Pittsburgh, for an appointment tentatively set for the week after Thanksgiving.

I'm really too afraid to get my hopes up that everything will work out perfectly.  Josh and JD are really good about the positivity thing, but I'm not always good about it.  I wonder if it's just harder when you're the mommy.  All you mommies out there have probably been to that website -  It says that 13 weeks into your pregnancy, "if you're having a girl, she now has more than 2 million eggs in her ovaries".  So part of my little girl has been with me since I was 13 weeks old in my mother's womb.  That's crazy.  Not to mention that little incident where I carried her in my womb for 9 months.  There's a closeness, a connection, a something that comes from being directly responsible for her survival for so long.  Is that the difference?  Or is it because, in a way, I've had extra time to get to know her?  Before all this, she was just mine.  All mine ... punching, kicking, and rolling in my belly.  I was nauseous for many months while carrying her.  How many sleepless nights had we already spent together before she was born?  Back then, I didn't know her, but I felt her constantly.

I had a much harder pregnancy with Neely.  I used to tell Josh, "This one is going to be different.  You think Laney is hard?  This little girl is going to show you what hard is."  I thought she would be more "girly".  I thought she would be exactly like me in temperament and that we would probably argue a lot someday.  I also thought that I would probably grow closest to her and that someday she would break my heart.  The random musings of a pregnant woman, huh?

Well, I guess my point is that I have been physically and emotionally tied to this little girl for a lot longer than anyone else could be and maybe that's why I'm not always so strong.  Or maybe I'm just a wuss.

For example, a few weeks ago she developed a fever all of a sudden.  She hadn't had a fever or illness in about a month, so it was pretty unexpected.  Things unraveled quickly - high fever, super fussy, and crying like she was in pain.  I don't handle that very well anymore.  I can't sit there and tell myself it will all be okay.  I just go from Zero to Panic in 1 second.  The uncertainty is debilitating and you just start having flashbacks to the hardest times.  You wonder if this illness will be "the one".  I remember being cheerful earlier that morning and then just emotionally collapsing when I realized she was sick again.  There was nothing to do besides draw some blood for a culture and give her Tylenol.  Until the doctors came to see her, the Tylenol kicked in, and the blood cultures showed us what we were dealing with, there was nothing I could do but hold her and try to comfort her.  I can't begin to explain how helpless you feel in that moment.  I held her and tried to stay calm and be brave, but the tears still came.  I felt alone and powerless.  I called Josh at work about 20 times, hoping he'd leave and come sit with us.  The sweet nurses wordlessly reminded me that I wasn't alone, stopping by often to check on us and bringing me tissues.  The blood cultures showed a bacterial infection and antibiotics were quickly started.  She seemed to feel better almost immediately and the crisis was over pretty quickly.  By the time Josh got off work, everything was okay again.  They caught it early.

I guess I didn't handle it too terribly, but I'm far from the brave person some people think I am.  Again, I'm sure Josh and JD would have handled it better.   They wouldn't have cried - I know that much!

Before that incident, she had been doing so well that I was seriously going to push for her to come home.  Now I am actually afraid to take her home.  She can go downhill so fast.  In the hospital, they can do blood cultures immediately.  At home, all we can do is take her to the ER and pray that someone recognizes her or listens to us, instead of telling us she probably has an ear infection or common cold.

This schedule is definitely wearing us down, though.  The way it works right now is that Josh and I wake up at 3:45AM.  He leaves for work and I drop off Laney with my parents.  I go to the hospital to replace JD.  Josh replaces me in the afternoon when he gets off of work, at which point I either go pick up Laney, stay with Josh and Neely, or go to work.  JD replaces Josh in the evening and Josh and I spend about 20 minutes   of family time with Laney before we eat whatever unhealthy meal we have time for and go straight to bed exhausted.  This schedule is hard.  It's hard for me, for Josh, for JD, for Laney, and for my parents.  I've stopped working full-time, so it's hard on our finances also.

I feel horrible about all of the things I do not have time for, but I am comforted by the fact that when I am with my girls, I do whatever I can to make them feel happy and loved.  I may not get to all of the other things (and I'm really sorry if there is some area where I may have disappointed you), but I don't regret the time spent with my girls.  Laney is a total mommy's girl.  We read books, we paint, we bake, and we sing songs.  If in doing that, I've spent the last bit of the energy I have left at the end of the day ... so be it.  Neely is too little to say what makes her happy, but you can already tell that she knows her mommy.  You should just see the way she looks at me sometimes.  We usually have a lot of "work" to do together, but I swear I could just sit there and trade smiles with that little girl all day.
My Pretty Girl

Laney enjoying the birthday cake she made for herself
Waking up with Laney

Making cupcakes with Laney
Painting with Laney

A day with Neely in the hospital is always a busy one.  It starts early - usually before she wakes up.  The pediatric resident comes in to ask questions about Neely's night and to tell me the plan for the day.  On Mondays and Thursdays, we discuss labwork.  I usually ask about her hemoglobin & retic (regarding her anemia), white count & CRP (indicators for infection), and creatinine (kidney function).  The doctor addresses my questions/concerns and says he/she will be back later with the other doctors.  Shortly after that, the clinical assistant comes in to take vitals.  They often have to try multiple times on multiple limbs with multiple cuffs for a blood pressure (Neely is very secretive about her blood pressure).  After that, the nurse comes in to do her assessment (shift change) and give Neely's methadone.  After all this, Neely is definitely awake.  If her stoma is not "bagged", then I usually have to spend the next half hour or so cleaning the skin around her stoma and fixing it up, so that the skin around it doesn't get too irritated.  She's pretty mad about this and not happy until I am finished and holding her.  If she is bagged and happy, we work on feeding and clamping her g-tube.  Or we work on tummy time and playing with toys.  When she is tired, she does NOT want me to put her down.  She is happiest on my left shoulder.  More doctors come in throughout the day.  GI, Infectious Disease, Immunology, Hematology, Palliative Care, Surgery.  She is also seen by a speech therapist and occupational therapist.  The nurse and clinical assistant come throughout the day to administer meds, take more vitals, and check on us.  We might also get visits from the chaplain, financial counselor, case manager, and social worker.

Sleeping on mommy
Favorite place to sleep

Thanks for my cuddle-bear, Christie Ahart :)
Boppy time
Tummy time on my pretty blanket from Aunt Caty

More shoulder time

Who is that pretty girl?

I try to take notes on almost every conversation, but sometimes it's just too much and I lose track.  I like to be able to give a full report to Josh when he takes over.  I also try to keep notes on feeding times and amounts, stoma output, g-tube output, etc.  I always hope for a few quiet moments so that I can clean the room (thank you, Clorox wipes) and change Neely's bedding.  I try to use the breast pump at least once or twice while I'm there, but it is almost impossible with all of the activity.  I'm fortunate to be able to order off of the room service menu 3 times a day because I'm a "breastfeeding mom", but it is rare that I remember to order and even more rare that by the time the food gets there, I have time to eat it.  Sometimes the food is just out of reach because she fell asleep on my shoulder and I'm sure as heck not going to wake her up.  One time, and I'm not even joking, the room service people called me to see if I wanted breakfast!  Yes!  As you can imagine, there is never a dull moment or a boring day with Neely in the hospital.  It is always busy and there is always something to do.

As always, the third floor nurses ROCK.  They treat us like family, even sharing their food with us sometimes.  They go above and beyond and here is just one example:

For a while, Neely's Broviac dressing kept peeling up, which is very dangerous because it is a direct line into her bloodstream and the Broviac site should never be exposed.  We tried a few different things to make it stay down, but what finally worked is a little tight meshy thing that holds the dressing close to her skin.  I don't know what it's called, but it works great.  It only comes in white, but last Friday the girls surprised us with a pink one.  One of the nurses had taken it home, dyed it pink, and washed it so that Neely could have a little pink dressing.  If that isn't awesome-sauce, then I just don't know what is.  Much love and many blessings to whoever thought of that and acted on it!  Shout outs again to Noor and Bryce, but we've also come to adore Lindsey, Angie, Kimberley, Sarah J, Amber, Callie, Miranda, and many more whose names escape me because it is 3AM now.  I also love talking and joking around with Elizabeth, Marlon, Jill, and Liz - the awesome clinical assistants.  Love the 3rd floor.  Good thing, too, because it's pretty much our second home.

The meshy stuff, dyed pink by Neely's awesome nurses

Not sure how else to organize this, so let's do a "systems check" for those who are curious about the details.

Gastrointestinal -
Nothing really happening from a gastro standpoint, which makes sense since the majority of her intestines were removed.  The g-tube (goes from her stomach to a canister drain outside of her) still cannot be clamped.  If we clamp it, she throws up.  We've managed to get her clamped for 2.5 hours before she throws up, but things are still not going the right direction.  I will continue to work with her on this and hope her stomach and intestine start speaking to each other again.

She has gained weight!  She is over 10lbs!  In fact, one doctor said she is a "big, fat baby" and she "looks like a cherub".  This is great, but they also said she doesn't need to be this big.  They reduced her TPN and lipids so her weight gain is slower and she gets a little leaner.  This will help preserve her liver.  We need to treat this more like a marathon instead of like we're trying to raise a prize pig at the state fair (paraphrased from a conversation with the GI Nurse Practitioner).  I agree completely with this decision.  Intestinal transplant has a higher success rate if you don't also have to transplant the liver.  Let's keep the liver healthy and know that the kid can gain weight if necessary.

Chubby baby!

Her liver is doing well at the moment, so they are not going to pursue the Omegaven at this point.

The last ultrasound of her belly did not show any fluid in the abdomen.  This is good, but also makes it harder to tell if there is any remaining yeast/fungus in there.

Surgery -
If the test ordered by Infectious Disease shows negative for yeast/fungus, they will proceed with surgery to replace her Broviac.  Not sure if they will pick a new site for this.  We talked a bit about putting in an abdominal spacer at some point, since her "abdominal domain" is shrinking now. This would be months from now, of course, but it is still a possibility.

Infectious Disease - 
The docs in this group had a conference to discuss the possibility of adding a strong antifungal called amphotericin B to her regimen.  The huge worry about this drug is that it is nephrotoxic - really harsh on the kidneys.  And of course, she only has one kidney so it is crucial that we keep it healthy.  They opted to give her the liposomal form of this drug, which is less toxic to the kidney, but said they would be watching her kidney numbers very carefully.  The number slowly began to climb (creatinine level).  Around the same time this was happening, I was reading a lot about the fungal meningitis outbreak going on in several states.  This is unrelated to the kind of yeast Neely has, but in reading this article I noticed that one of the drugs they use to treat this was the same - amphotericin B.  The article mentioned that doctors could minimize the risk to the kidney by giving a saline infusion prior to treatment.  I knew that this wasn't part of Neely's current regimen, but at first didn't want to ask about the saline because I figured there was a reason they didn't do it and it must be a stupid question to ask.  Then her creatinine went up to .7 and I finally asked the infectious disease doctor about it.  She said that, of course, it should be in the orders.  Josh and I asked her to double-check when they left the room.  Sure enough - it was not in the orders.  After giving the saline bolus, her creatinine level did drop for a while, but started to climb again after 3 or 4 days.  They've since lowered the dose and put her back on another antifungal also.  She has completed the regimen, but they want to continue to treat until they get the results back from the test they ordered.  Yeast/Fungus is a lot harder to get rid of.

Immunology/Allergy -
This specialist was recently added to her team.  They want to see if there is an underlying issue which makes her more susceptible to fungal infections.  This involved a whole different set of labs that I have ZERO understanding of.  Way beyond my comprehension.  After a lot of tests and a lot of blood, the immunologist said that it did not appear that she had any underlying issues.  Her immune function looks normal.  It is still good that this specialist was added because we now have a baseline for her immune function (prior to transplant) and because he recommended cortisone for a rash Neely had.  The cortisone worked and her skin is doing a lot better.

Hematology -
Neely is anemic, but they believe it is related to her chronic illness - more of a secondary condition.  Her kidney is not doing a great job of sending signals to her bone marrow to produce more red blood cells.  Her iron absorption isn't great either.  Her hemoglobin had dropped to 7.2, but she was still asymptomatic.  They started giving her EPO shots and her Hgb rose to a 7.8, but they opted to transfuse her anyway.  She got some new blood last week and pinked up pretty quickly.  It seemed to put her in a very good mood.

Palliative Care -
This is also a recent addition to her team.  At Dell, the palliative care specialists are not just for end-of-life care, but for pain management and coordination of care.  Josh and I both felt and probably continue to feel a little weirded out by their presence on Neely's team, but if it's true that they assist in the rest of the team's communication, then we are all for it.  Regardless, one of us will always be in this room to make sure nothing crazy happens.  Don't get me wrong - pretty much everyone is great here ... but no one is perfect and mistakes will happen.

Speech Therapy - 
I think she may have taken a step back with her oral aversion.  She was doing very well for a while, but right before she got sick with the bacterial infection, she stopped wanting to eat.  It's hard to tell if she is nauseous because they are weaning her off of pain meds or if she has some other reason for not wanting to eat.  She still puts her hands in her mouth, so that is good.  I'm trying to make sure all of her feeding times with me are soothing and pleasant.  I'm also trying to have her play with toys so that she is comfortable with textures in her hands and mouth.  

Occupational Therapy -
Working hard, playing games!  I've only worked with OT twice, but it is fun stuff.  We are working on strengthening Neely's core.  She sits up and we support her back and try to make her play with toys.  We also work on tummy time.  I think JD does arm and leg stretches and exercises with her also.  Neely's neck strength is getting a lot better and she is starting to roll from her back to her side.  She seems to make progress every time.

Other - 
They are stepping down on methadone, but sometimes it is too much, too soon.  She gets super fussy and gets very shaky.  They actually give morphine when she is having withdrawal symptoms from the methadone.  Sounds strange, huh?  Apparently the methadone takes a while to build in the system, so if she is showing symptoms of withdrawal, it is too late for extra methadone to catch up ... so she gets a push of morphine.  

Both her Broviac dressing and ostomy bag have had to be changed frequently.  This is not ideal.  Ideally, you only have to change the Broviac once a week and the ostomy bag every couple of days or so.  By the way, we love the ostomy nurses here.  They are so funny and so helpful.  They give us lots of great ideas and say that they usually don't throw that many ideas out there because it's so overwhelming for most parents.  I said, "Yes, we speak Ostomy now".  I sure didn't know a couple of years ago that someday I'd be sitting around laughing about ostomy care, but ... it's our new life and I'm glad we try to keep our sense of humor intact.

Pittsburgh -
We have a tentative appointment set for the week after Thanksgiving.  The lovely case manager at Dell seems to think we will qualify for an Angel Flight (so we can avoid a commercial flight).  Pittsburgh will not see us if Neely is still on medications.  She has to be off meds, discharged from the hospital, and have had one follow-up visit with GI before she can be evaluated by Pitt.

Hmm, what else.  A few weeks ago (or maybe a month ago?), I changed my job status to "PRN", which means as needed.  Working full-time and keeping up with a baby in the hospital was horrible.  I felt like I was doing a disservice to my employer and to my baby.  It was a difficult decision to make, but in the end I decided to do the thing I would probably regret the least.  Money is definitely tight now and it feels a little icky having my husband pay all of our bills, but how can it ever be a bad thing to spend more time with your sick child?  

I wanted to be able to talk to all of Neely's doctors in person.  I wanted to work with her on her developmental stuff.  I wanted to be able to advocate for her at all times.  I wanted to be a constant for her.  A familiar and reliable voice.  I wanted her to know her mommy.  So far, I'm still happy I made this decision, but I am definitely worried about our finances.  You guys helped so much with the fundraisers!  I don't worry too much about her medical bills at this point , but I do worry about the regular bills - the mortgage, the utilities, etc.  The payment for my insurance premium (through COBRA) is over $900 a month.  Scary, but we will find a way to make it work.

Before I end this, I want to say a few words about a friend/co-worker that recently passed.  Kaci Fairchild was a beautiful and sweet young woman that passed away entirely too soon.  I'm sorry I was unable to attend her visitation and funeral, but in a way I'm glad that I didn't.  I hadn't seen her since my friend Ilsa's wedding and hadn't worked with her since long before that, but my last memories of her will be her beautiful smile, her sing-songy voice and Texas accent, her enthusiasm for holidays, and how much she loved playing with Laney.  She was born to be a mother and I feel devastated that she never had the chance to have a little one of her own.  

Everyday you set foot into our job at one of the Texas Oncology clinics, you bravely accept that you might hear some terrible news about one of our dear patients, but lately the Texas Oncology family has been shaken with bad news about our own employees - cancer, illness, and the passing of our own folks.  Guys, I know that with the stress of our daily tasks, it can sometimes be a powder keg of drama, but I want to tell you how glad I am that no matter what, we are in this together.  We are a team.  We are a family.  Just like any other family, there are times when it seems dysfunctional, but remember that when it counts - we're all in.    We mourn together, but we also come together to celebrate and do amazing things everyday.

As hard as the Lucquetes' situation has been lately, I can fully attest to the amazing things my Texas Oncology family can do.  I benefit from this everyday, with your kind words and prayers.  Thanks to all of you, and to Belinda N and her students, and to Dr. Galaviz & Lindsay, and to Philips, and to all the friends and strangers who get us through this everyday.  Every email, every text, every phone call, every donation, every prayer, every home cooked meal, everything helps - no matter how big or small.  I wish I could type the words they way I feel them in my heart.  Please just know that we love and appreciate you all.

Okay, I'm out of time, but am not out of pictures.

Presents for the girls from Aunt Kris

from one of Josh's coworkers at Philips :)

Aunt Judy playing with Laney when mommy got sick.  Love the alphabet floor puzzle!

My little fairy princess ... and Laney

Laney trick-or-treating with Daddy

Laney living the hard life over at Grandma's

Big sister comes to visit

I missed my Aunt Caty!

The pretty girls, reunited

Aunt Bekki!

Family dinner made possible by Uncle JD
Voter fraud!
Check out the Wonder Woman flag above her bed, courtesy of Aunt Judy & Uncle JD
Neely cuddling the Fuzzy Wuzzy Aunt Jenny brought from Maine (thanks & congrats on the engagement)