Neely's Song

There are some great nurses at Dell Children's.  We have at least 2 that we really like - Noor and Bryce.  They seem to have made a point to get to know Neely (and us).  Since we see and interact with them the majority of the time, they have made our stay at Dell Children's very pleasant.  We also enjoy meeting with the doctors (surgeon, infectious disease, GI, etc).  That being said, I don't think I like the resident thing.  I'm still not sure how it works, but I think a resident pediatrician is assigned to her during each shift.  There is another doctor that oversees the residents, of course, but let's just say there are some residents who come across as more capable than others.

I'm calming down, but I was super upset earlier this morning.  One of the residents who seems a little shakier than the others came in to check on Neely.  Things were going well and she observed that Neely was doing a lot better, no fever, no output from fistula, in good spirits, rash improving, etc etc.  She asked what our plan was and I told her we'd like Pittsburgh to evaluate her for transplant.  She asked if we had home health set up.  Then she asked if we had talked to HOSPICE.  What the heck?  Where did that come from?  Why would we be talking to hospice about the smilingest, happiest, sweetest baby in the whole world?  As long as the answer to the question, "Does she have a chance at a better life?" is still yes, then we will not be talking about palliative care.  Yes, she has some big challenges ahead.  Yes, she has dealt with a lot more pain and crap than some of us will ever have to deal with.  However, she has a fighting chance and I am not taking that away from her.  If you've ever really looked at her as something other than a patient, a body on a hospital bed ... if you see her smile and see her little curious eyes following your voice across a room.  Or hear her little cooing sounds.  Really?  You would just stop giving her IV feedings and let her starve and die?  Did you really just ask me that?

My actual answer was: "No."

"Oh okay, just checking".

So mad.

Anyway, the good thing is that my anger is making me write.  We've been so busy that I haven't felt right about taking the time to update here.  As you may have guessed, Neely was readmitted on Thursday.  We had her home for 2 days and then noticed the output from her fistula (which had all but stopped) was increasing again and was a scary reddish-brown color.  She started getting a low-grade fever and per Olga (awesome home health RN), we took Neely early to her scheduled GI appt.  Olga was able to get us in a little sooner to meet with the doctor.  Josh insisted we keep this appointment since we have to establish with GI before we can start the Pittsburgh process.  Dr. Sanders said that she was keeping Pittsburgh up to date with Neely's previous hospital admission.  She said she was hoping they'd see Neely sooner, but they said there really wasn't a point to it because she still needs to be at least 10lbs and preferably 12 to 18 months old.  Apparently this is because 12-18 months is when other little kiddos start going outside and having accidents.  If a baby Neely's current size passed away, it would happen pretty quickly and the intestines would not be viable.  A 12-18 month old donor would more likely pass away from an accident and his/her organs could be kept alive for transplant.  Such terrible facts.  It's still horrible to think that for Neely to get her transplant, another kiddo would have to die.  I can put a face on what 12-18 months looks like because Laney is just a little past that age.  As my brother put it, "Laney was already walking and beginning to talk by then".

We also talked about a different form of TPN with a lipid called Omegaven.  We'd read about this as something that could possibly give her liver a better chance.  It's apparently super hard to get, but they are working on it.

After that, we were sent to the ER and admitted again.  She had a fever and stuff was just pouring out of her fistula.  They took cultures and immediately put her on 2 antibiotics that were harmful to her kidney.  They've since taken her off of those and now she is on 2 that are okay for her kidney.  She has a bad rash, possibly a side effect of the antibiotics.

She is lots better today.  Fever is gone and there has been zero output from the fistula since last night.  Her rash is getting better.  She is all smiles again.  Bryce gave her some Benadryl last night so she was sleepytime and not worried about scratching at her face.

They said to expect for her to be here a lot longer this time.  I don't really want to ask what that means.  2 weeks, 1 month, who knows?  I figure we might as well adjust to living this way for a while.  I miss Laney Lucquete so much.  We don't really want her hanging out here at the hospital, but I'm so used to having her with us at night.  Thank goodness for all the help and support we have.  Mom and my brother and Josh's brother, JD, have really stepped up and made it possible for us to be with Laney or Neely.

Spending time with Big Sister

JD has awesomely volunteered to stay with Neely at the hospital when I go back to work.  He is spending lots of time with Neely.  My brother, Jack, got really close to Laney when she was a baby.  He helped babysit her during the day and she adores him.  I like that this time around, it's JD and Neely who will develop a special bond.  JD is awesome.  He's had to take a crash course in ostomy and g-tube care.  He is fully capable of administering an antibiotic with a syringe pump.  He's so sweet with her.  Even though I'm always nervous to leave Neely's side, I feel a lot better knowing JD is holding down the fort.  (Grandma Lucquete, if you are reading this, you sure raised some wonderful sons.)

We left Neely with Uncle JD a couple of times this weekend.  Saturday, we left around 8PM to go spend some time with Laney.  My friend Judy came back to the hospital to help JD and they apparently had a rockin' good time with Neelita.  They took some great pics and also did an awesome job keeping us informed about Neely throughout the night.  Yesterday, JD spent most of the day with her.  We had lots of fun playing and cuddling with Laney.  Got some housework done also!

Uncle JD!

Neely talking to Aunt Judy

The surgeon just came in and mentioned surgery on her Broviac later this week.  Praying for zero complications and a much better central line afterwards.

So far it sounds like the chorus to Neely's Song is, "We're back in the hospital".  Hope that is not the case.  Incidentally, the name of this website does come from a song I sing to Neely all the time.  It's absolutely terrible, but here are the lyrics:

Neely's Song, Neely's Song
This is the first* part of Neely's Song

Neely's Song, Neely's Song
This is the second* part of Neely's Song

*keep going as long as you want

Neely, Neely, Neely Worm (pronounced with an accent, "wodm")
Neely, Neely, Neely Worm

That's pretty horrible, huh?  It works, though.  I think she likes it.

Special thanks to 1) Philips in San Marcos for raising more $ during their kickball tournament 2) Noor and Bryce for being such wonderful nurses 3) Judy for helping to care for Neely on a Saturday night 4) JD for being an awesome Uncle and putting up with my magillion texts 5) my brother for doing the dishes, visiting us, and keeping us fed 6) my mama, for putting up with crazy Laney Lu and missing her trip to Vegas 7) Laney Lu, for all the hugs, kissies, and cuddles 8) Amaya's Taco Village for yummy chicken tacos 9) Josh's friend Jake & his lovely wife Shanna for buying us a mini fridge for Neely's TPN 10) Sonnie S, for a sweet and thoughtful text just when I needed it 11) Our first web donation!  Thank you!!! 12) All the encouraging words we constantly read on our Facebook pages 13) Neely Lu for being the smiliest, bravest, toughest little champion I know!

P.S. Caty is coming to visit tomorrow!

P.P.S Pharmacy says the Omegaven is a no-go unless Neely is in liver failure.  Kinda sucks, but at least it can hopefully be an option at some point.  Anybody able to get their hands on Omegaven, please send it this way!