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

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 - www.babycenter.com.  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

Cheeks!

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)

Ignorance IS bliss

Again, I start with an apology.  I have been terrible about updating the blog.  It's 80% "there never seems to be time for it" and 20% "I'm not sure what to say anymore".

I feel like I've sort of lost track of things.  Before her 6th surgery (intestinal removal), we had a pretty good grasp on things - her unusual internal anatomy, her medications, her schedules, etc.  We were really the experts on this little girl.  After that 6th surgery, I think we all had to step back and just watch somewhat helplessly.  She had so many IVs, so many pumps, so many medications, so many issues.  I don't think it would have even been a good idea to try to keep up, because it seemed to change a lot.

Neely took a lot longer to fully recover from the 6th surgery.  She was very swollen after surgery, which they told us to expect.  They said she'd get a lot worse before she got better.  The first night after surgery was pretty rough.  Her temperature dropped and they had to put a big warming blanket on her to bring her temperature up again.  Her oxygen absorption wasn't great.

After that night, she seemed to improve a little faster than expected.  Her swelling went away pretty quickly, but then we noticed that there was uneven swelling - all on her left side.  We were happy when that seemed to go away, but the doctors still felt there was something brewing in her belly.  They suspected there was more bacteria and/or yeast in her abdominal cavity and were hopeful her body would form a big wall or abscess around the infection, which they could then drain.  This never happened.  Ultrasounds showed some small pockets of something, but not one big thing they could easily drain.  We thought things were really getting better because the swelling had gone down so much.  Other ultrasounds showed a possible "fungus ball" on her kidney.  We were pretty worried about that, but after another ultrasound, it was thought to either have been a fuzzy spot on the ultrasound or some harmless (sort of) cyst.

Just when we stopped worrying about that, we got a call that they wanted to do a procedure on Neely's belly to aspirate one of the small pockets they found on the ultrasound.  This is not done under anesthesia,  but they gave Neely some extra pain meds before the procedure.  Right before the doctor put the big needle in her tummy, they gave her some meds for sedation.  She was still awake and upset.  They gave her more.  Still upset.  More meds.  Still upset.  I lost count of how many extra times they gave her meds to help calm her.  It didn't work and they were getting nervous about how much stuff they were giving her.  Finally, they decided to just go for it.  Hold her legs, hold her arms.  We watched while the doctor poked her twice with a big needle and drew fluid from her belly.  I'm sure it felt like torture.  I think there is a certain pitch of a child's cry that just makes a mommy's heart ache.  Afterwards, Josh asked me why there were red marks on my arm, and I realized I had been digging into my own skin.  Despite all the pain and sedation meds, she was still wide awake afterwards.  They said that if the fluid they drew tested positive for bacteria or yeast, they would need to go back in and operate to "clean her out".

It seemed to take her a lot longer to truly recover.  She was still on pain meds and definitely let us know she was upset whenever they tried to step down on her narcotics.  She had a fever for longer than usual.  I was really worried that this time she would not pull through.  I guess I still worry about that.  Slowly, things seemed to get better.  They put her on methadone to help her with withdrawal.  They put her on an additional antifungal drug.  Her temps normalized.  They took her off the ventilator and she did great breathing on her own.  Her cultures kept coming back negative.  Not sure if it was the methadone, the extra antifungal, or just time, but she finally came back to us.  The real Neely.  The smiley face.  The sound of baby cooing and the crinkle of diapers from baby legs kicking up and down.  It was amazing.  She was back!

They moved her out of the ICU to the 3rd floor.  This was a great sign.  They don't move you and work so hard to take you off of pain meds unless you are well on your way home, right?  It was awesome and it was also Thursday.  Not a bad Thursday at all!  The following Friday, I was at work and feeling wonderful (other than work stress), because she was getting better.

Then around noon, I got a phone call   From Josh.  I knew it was bad because he never calls me while he's at work.  I braced myself, my mind racing, trying to come up with what he was about to tell me.  They found a little yeast in one of her belly cultures.  They want to go in and operate and clean her out.  When?  Today.  3PM.

Once again, I lost it.  I just kept thinking I had jinxed it because I told everyone she was doing great.  "I'm afraid to be happy anymore", I told my coworkers, through tears.  It's true.  It doesn't feel "safe" to be hopeful.  My sweet coworkers told me to go and be with her.  As I've said before, I don't think there is any point in asking God "why???" or saying "it isn't fair", but during that car ride, I came pretty close.  This was the first time we had to hand our non-sick baby over to major surgery.  She's going to hate us.  She's going to think this is all there is to life ... be happy for a little while, be in pain and in recovery for longer.

I spent a little time with her before they took her away for surgery.  She was so happy.  So happy and I knew that when she woke up again, she was going to be in pain.  In the waiting room, I tried to knit her a little scarf (thanks for the beautiful alpaca yarn, Jenny!).  After an hour, I was too nervous to do anything.  Josh and I tried to figure out how many surgeries she had.  We had truly lost count.  We bickered a little, because ...  well, because that is what you apparently do after being at level 10, code red for almost 4 months now.

Finally, we were called to the recovery room.  There she was, once again connected to monitor and with a breathing apparatus under her nose.  She was definitely in pain.  Most likely because the pain meds prescribed were way under her baseline. She has such a tolerance now that, as Josh says, morphine is like candy to her.  It barely does the trick.  Because she was in surgery, she missed her methadone dose.  This also made her feel horrible.  She started to cry, but the belly pain was so bad that she would not inhale again and started to turn blue.  The oxygen monitor started to go from 100 to 60 something. She finally took a breath, but now we had a whole new thing to worry about.  After a while, she was put back in her room on the 3rd floor.

That night was long and restless for all 3 of us.  She was in pain, but it seemed like no one was willing to step up on her pain meds without checking with someone else.  It being the middle of the night, the answers did not come as quickly as we would have wanted.  She cried in pain every few minutes or so and the alarms on her oxygen monitor and heart rate monitor went off repeatedly.  I had flashbacks to her painful little cry prior to her 6th surgery.  It was a bad situation.  Apparently, she had been on a weaning schedule, so none of the pain meds besides morphine (candy) were available to her.  And the methadone was late.  And the Ativan (sedative) was inadvertently left off of her new orders.  And the pharmacist seemed reluctant to give her any more morphine because it was already so much, even though it really wasn't enough for Neely.  I felt like we asked many times and explained many times that she needed more.  I don't want to say that they ignored us, but I can say that not much was done.  It was so frustrating.

I fell asleep for a tiny bit, but awoke again around 3:45AM.  She was still in so much pain.  They said her hemoglobin came back low again - 7.2 and they were going to give her a blood transfusion.  Her temp was 101.6 and I asked if she could at least have Tylenol.  The nurse said she asked the surgical nurse practitioner, who wanted to defer to the surgeon.  At this point, I'm ashamed to say, I lost it.  I tried to wake Josh to tell him about the Tylenol thing, but he was so tired he could not wake up.  I felt so alone.  So powerless.  I sat at the edge of the bed and cried.  Finally, like a coward, I walked out of the room.  I know I should have stayed with her, but instead I cried and went to the chapel.  There was no one there, so I cried and prayed and begged.  Please help her feel better.  She's just a baby.  I finally calmed down and sat in my car and waited for shift change.  I wanted a fresh start.

I called Josh around 7:15AM and asked who our nurse was and if we had had her before.  He said she was new to us, but was a sweetheart and seemed to be on top of things.  I walked back to our room and Neely did seem better.  She was finally asleep.  Not sure if it was the Tylenol they finally gave her or the Ativan they finally put back on her orders, but she was finally asleep.  Slightly refreshed and energized, we talked to as many people as possible about her pain.  Explained it over and over and Josh added a "and please hurry" every time.  One of the docs came in and said that it seemed like the nurse/s from the night before did not push her morphine button as often during the evening.  They wanted to try that first before they changed any orders.  So we started pushing it ourselves.  Every 30 minutes, she would rouse and cry and we pushed the morphine.

It was better, but as our nurse said, it would not be manageable at night.  I left around 6:30PM to get Laney and Josh stayed to wait for JD.  Josh said our previous anesthesiologist, Dr. Park came to talk to him and said some very nice things.  He apologized for Neely having had such a rough night.  He basically took over and made sure everyone was on the same page.  He went up slightly on Neely's morphine and gave her the option of another pain med if it was another rough night.  He said it was cases like Neely's that are the reason he got into his profession - he wanted to help kids like her.  He seemed to take a special interest in her case.  I wish I hadn't missed that conversation.  I hope to see him again soon and thank him, because Neely had a much better night last night and was awake and alert today.

He also said some rather alarming things.  He was in the operating room for Neely's 6th operation - the one where her intestines were removed.  He said she was in pretty bad shape, very sick.  She bled a lot.  There was a lot of infection.  He said it was very frantic, with lots of people saying lots of things.  Lots of adjusting to different problems, lots of medication.  An organized chaos.  He said he only comes across something so challenging once a year, maybe.  It was one problem after another that they had to keep throwing different drugs at.  I guess, as the title of this post says, we were blissfully ignorant of all this.  We knew it was bad.  We knew it was serious.  We did not know she was in sepsis.  Thankfully no one used the word before the surgery, because we would have been a million times more afraid.  All I've ever heard is that sepsis is very bad.  Fatal.  I'm so relieved we never knew this during her surgery.  We were scared and worried, but were still able to be comforted by pictures of the BBQ fundraiser.  We were still able to talk and joke around a little.  Had we known how bad it was ... I think it would have been excruciating.  We could really have lost her that time and we didn't fully know it.  We are so grateful for Dr. Meyer, Dr. Park, and everyone in that room that day.  They literally saved her life.

So it is Sunday and she is, again, doing better than expected.  A little swelling, but no more fevers.  Her white count and other numbers look very good.  Her liver enzymes are a bit high, so they will consider taking her off of one of the antibiotics.  She was awake and, though she seemed a little hazy, she did not seem to be in as much pain.  So much better that they are already tapering her morphine down a little.  She is so amazing.  She really is tough.  A real champion, which is what her name technically means.

I was admiring her little smile right before she went back to surgery this last time.  Just the fact that she does smile.  How many times a day do we get irritated or frustrated by some little thing?  How many times do we let our minds stew over some stupid situation or get our hearts broken by someone and we just think life is horrible?  My little girl ... she has known ZERO days that did not involve medication and very few days that did not involve sickness or pain.  But when things aren't so bad - she smiles.  She's beautiful, sweet, smart, resilient, and lovely.  She's surrounded by angels, seen and unseen.  She's prayed for daily.  She's endlessly loved.

She's done so much in her little life, but she doesn't know anything about that.  She sees pretty colors and she smiles.  She hears familiar voices and she smiles.  She watches the little animals on her mobile move.  And she smiles.  This kid has a lot to teach us about how simple happiness is.  How little we can live with and still be happy about.

Neely Jacqueline Claire Lucquete, smiling right before her 7th surgery

finally, some much needed sleep

Okay, thought I'd have more time to write about the BBQ fundraiser and the hundreds of wonderful people who have supported us with prayers, donations, support, meals, uplifting words, music, ice cream (!), and lots of other things.  We thank you so much from the bottom of our hearts and we realize that is not nearly enough.

As I told my friend Lori the the other day, sometimes we feel like we're in the middle of a terrible storm, but it seems like all our friends and family surround us and protect us, whirling all around and giving us exactly what we need to get by.  I'm sure there is a more eloquent way to put that, but it is almost 11PM and I'm about to run out of brain juice. 

Love to all, 

Kat

My Boo Boosies

What a crazy few days this has been.

We brought Neely home (for the 4th time?) on Sunday the 16th.  A week ago.  That was after they admitted her for anemia which turned out to be, "yep ... she's anemic".  Monday, Tuesday, and even Wednesday were great.  We had a few ostomy bag issues, but other than that the Lucquete house was probably the happiest it had been in months.  Neels slept pretty much throughout the night and smiled away the day.  We had a couple of nice family dinners with Neely claiming a spot at the head of the table (on her little changing table cushion).  It felt so awesome to sit around the dining table, saying grace while holding her hands.  Without having to run around between Grandma's, Dell, and our house, I actually had time to make dinner!  It was awesome having my girls at home.

Enjoying her swing (thanks Aunt Keri!)

Very carefuly, a little time outside

We had an appointment on Wednesday at Dell with her hematologist.  The visit was pretty uneventful ("yep ... still anemic").  My friend Rhea stopped to visit us at the appointment, very cool.  By Thursday morning, I was really feeling pretty good.  We seemed to be on an upswing.  Only one thing ...

I forgot it was friggin Thursday.  Thursday seems to be the day when the bad stuff happens.  I don't know why.  It seems statistically impossible for things to always go wrong on Thursdays, but somehow they do.  I remember being at work and being almost myself again.  Cheerful and focused and busy.  People asked how Neely was and I was able to say, "She's doing great!"

Around 2, I get an update from JD that she had been fussy all morning (RED FLAG) and had a slight temp (RED FLAG).  He tells me that he is unswaddling her and will take her temp again in a few minutes.  I try to believe that everything will be okay and that maybe she was just swaddled too tight.  Deep down I already know.  My baby is never fussy unless she is in pain.  The next update is that her temp is climbing.  I push back from my desk and start crying because I know what happens next.  Special thanks to Irene, Amie, Jess, Shirley, and my other coworkers for helping me through those next few hours.  I called her GI doc's office and was told she probably had an ear infection and to call her pediatrician.  I called Josh to ask him to hurry home and take a look at her.  When he got home, he was able to get her temp down with some cool washcloths.  I called again to check on her and he said she was holding her breath and trying to bear down as if pooping.  She seemed to be in a lot of pain and he was taking her to the ER.  The next time I called, he said EMS was coming because he didn't know if she might stop breathing on the way to Dell in 5 o'clock traffic.  I left work to meet them at Dell.  I got there too early and tried, through tears, to check in at the front desk.  Not sure if I made any sense at all.  Thank God my brother and Judy showed up to wait with me.  They put us all in ER room 24 and we waited for Neely, JD, and Josh to get there.  When Neely got there, she was super pale, but alert.  She was making little raspy painful sounds and there was not much I could do to help her calm down.  It's kind of a blur to me what happened in the ER, but I do remember them saying she probably had a virus and was a little congested.  I tried to explain her history and what we thought was going on (see post by Jack, below).  As I did this, they were doing some horrible procedure that involved flushing out her nasal cavity.  They pulled out a little mucus like "tada!  here's your culprit", and I think we all just prayed that a doctor that actually knew her would arrive soon.  But no ... a surgeon came to look at her and decided to flush out her stomas and rectum.  Josh asked how much the doc wanted to flush with because she is tied off inside - there is nowhere for liquid to go and we were concerned she would burst inside.  For some reason, this doctor seemed to think we were calling him inept because there was some remark about how he had been doing this for a long time and he was pretty sure he knew how to flush, etc.  We quickly explained that we just wanted to understand what was about to happen.  Then we watched as he flushed her jejunostomy, her fistula, and her rectum.  All with the same little tube.  A little green stuff came out of the first two, and some mucus came out of her rectum.  She got a Tylenol suppository and seemed to feel some relief.  Antibiotics were started and we were moved to the PICU.  Aunt Caty, bless her heart, came to see Neely while we were still in the ER and joined us for our move to the PICU.  By this time, I was mentally exhausted and it was awesome having Caty there to answer questions about Neely's time in the NICU.  She went immediately into War Room mode and put questions up on our dry erase board.  She was vigilantly watching everything and asking all the right questions.  She stayed with us until 1AM, enduring our weirdness and Uncle JD's hadn't-slept-in-over-24-hours bad jokes.  Words do not describe how we feel about our Caty.  Jack was right in his last post - she is like Neely's guardian angel.

Anyway, back to the PICU.  Neely seemed to do a little better, but then quickly got worse.  She made some of the most painful crying sounds I have ever heard.  She spent the next day and a half  making a painful whimpering sound during every - and I mean EVERY - exhale.  Even with morphine.  Even with antibiotics.  I didn't think she had any more energy to go on.  Can you imagine spending almost 2 days feeling that kind of pain? I couldn't sleep much, hearing her make that sound.  Like a tortured animal.  It made me think how I had in recent years had to put my two 16-year-old doggies to sleep because they were in pain.  As soon as I knew they were in pain and would not get better, it was clear what the right thing to do was.  I wouldn't let an animal suffer and here I was, listening to my baby daughter struggle in pain with literally every breath.  For almost two days.  We kept asking for more morphine.  Please feel her belly?  Doesn't it look swollen?  Can she please have some Tylenol?  Her temp is up.  She's really red.  Really - the CT scan and X-rays showed nothing???

Finally early Saturday morning, the surgeon who has done all of her surgeries saw her and decided she was not improving, her belly looked swollen, she was not responding to treatment, and it was time to take her unused intestines out.  We knew this was coming.  We wanted someone to say this.  Somehow, it was still a shock.  Surgery during a fever and infection is not ideal.  

After watching her struggle for so long, I was afraid she was not going to be strong enough to make it through the trauma of such a major surgery.  I talked to her, whispered in her ear what a good baby she was.  How proud she made us all.  How strong she was.  How no matter what, she was going to get to rest and not have to fight so hard.  I told her we loved her so much and to not worry.  I told her over and over just to do what God tells her to do and it would all be okay.  In weaker moments, I begged her not to leave me.  Jack and my mom came a little before they took Neely to surgery.  We all prayed for her.  Josh told her how amazing she was and how in her short life, she had already taught us so much.  He told her how grateful he was for her teaching him how so many people - friends, family, and strangers - could come together and do wonderful things for someone in need.  With 2 minutes to spare, the chaplain on call walked in and baptized Neely with holy water from Lourdes (from a trip many years ago).  All too soon, I was handing her over again for surgery.  How many times have we watched them walk away with our little girl to the operating room?  

Meanwhile, in San Marcos, things were ramping up for Neely's benefit, a BBQ fundraiser.  We had so hoped to be there, but thankfully, JD and Josh's mom were able to attend on our behalf.  My sweet friends texted me lots of pics of the event.  I truly feel that these pics sustained us during what was an incredibly scary few hours.  There was a BBQ plate, bake sale, and even some crafts for sale.  Volunteers stood with signs, bringing in traffic.  It was a huge success!  We have such ridiculously amazing friends.  And our friends have ridiculously amazing friends.  Josh and I are still baffled as to what makes people spend a perfectly nice Saturday volunteering their time to help our little girl?  Yes, sometimes it takes a village to raise our little families, but I guess it's different when you can actually see that village, all gathered up in one place with smiles on their faces and a spiritual energy in their hearts.  My Texas Oncology family does this - we do it for Relay for Life and Race for the Cure.  We do it for loved ones lost, sweet patients and coworkers who have passed.  But this time they were doing it for our little girl.  Our little Neely.  There are no words to describe how that feels for us.

Back to Dell ... the surgeon came in and said he was very pleased with the surgery.  He said she lost a lot of blood - 140 cc's or so, but that it had been replaced.  He said, with guidance from Pittsburgh, he removed all of her unused intestine, large and small.  He removed her gallbladder.  She no longer had a mucous fistula.  She only had about 2 inches of colon left above her rectum.  He said she was doing well and that his concerns were about the cavity left behind where her intestines had been.  It might make transplant difficult because there will be size issues between the transplant organ and the space she has to accommodate it.  He mentioned possibly implanting a device at some point to keep this space wide enough.  After he left, a flurry of nurses and doctors came in with Neely, working like a well-oiled machine all around her.  Pumps, catheters, an arterial line, a breathing tube, etc.  There are so many "things" keeping her going right now.  Let's just say this would be a really, really, REALLY bad time for an apocalypse.

The doctors warned us that she would be very swollen and that things would likely get worse before they got better.  They would be on the lookout for blood pressure problems, fluid in the lungs, not enough urine, etc.  The warning was good because she did indeed look swollen.  Swollen and red and surrounded by IV tubing, with a breathing tube taped to her face.  The nurse assured us that she would be watching closely for signs of pain.  Neely is on a Fentanyl drip, with Versed for sedation.  She is totally night-night.  

Even though she looks terrible, I feel better knowing she is not fighting this by herself anymore.  She is relaxed and sleeping.  She is surrounded by nurses constantly, monitored intensely.  In a way, I feel like we can all relax for a little while.  I actually left last night to go home, shower, and spend some time with Laney.  I'm sure that's not how every mother would handle this situation.  I guess I know myself too well.  If I sat here eavesdropping on every conversation they had about Neely, watching every number on the monitor, measuring every drop of urine, I would go nuts.  That's like watching your 401k.  Things will go up and come down.  All I need to know is the overall.  Is she improving or is she getting worse?  

As of today, right now, she is improving.  Temp is good.  O2 saturation is good.  Swelling is going down.  She is making lots of urine.  Heart rate is good.  She is less red.  She is sleepytime.  She is not going to remember this.

Less swollen, day after surgery

  

P.S. Next post will be about the fundraiser and the many, many good folks who helped/donated.  Thank you all so much for everything.