Trying to smile

I am so glad May is almost done.  Not only am I ready to get rid of the rugrats at work, but as you know if you've been reading, this has been one hell of a month.  I am not sorry to see it go.

We got initial results on J's EEG.  No seizure activity recorded, but there was a "slowing" along the way.  Of course, we were told, that can be seen when patients are very tired.  Ummm, didn't you tell me to sleep-deprive him so he'd be tired through the test?  Geniuses, I tell you.  We see neuro later this week.  Trying not to get my hopes up, but I really hope he has something to tell us.

So basically, no answers yet. Do y'all know how SICK AND TIRED I am of no answers? Yes, no seizures is good, but then why did he have one? If we have answers, then we can work towards fixing, or at least dealing with the problem.  Metaphor:  your car breaks down in the middle of the highway.  Do you just randomly start replacing the oil, brakes, filter, transmission, starter?  NO!  You have someone figure out the problem.  Only then does your car start working better. 

But I'm trying to be positive at the same time.

M is doing quite well now.  **whispering** No throwing up since surgery!  We still are watching her O2 needs and SATs closely, but the docs are very pleased.  At least the docs I listen to are.  I don't care what the idiots who don't know her think.  She's really sleepy during the day, but then again, she's not much of an afternoon napper.  She gets her sleep in bigger chunks.  And boy, does she like to play.  She and J had a kicking contest a few days ago.  Jaime would kick, and I'd get all excited.  So Maryn would start in.  Back and forth.  So cute.  And so nice to have them back together.

J is still working on his vocabulary.  He could care less about walking right now, unless it's going to take him "oufide"  so he can play in the "gaff."  Just don't put his feet in the "gaff."  He's started to say his name.  "Damu" while patting his chest.  And two days ago, out of the blue, he came out with "awefum."  I'm trying to get him to put "damu" and "awefum" together.  :)  'Cause it's true!

Justice

When I first was hospitalized with M, before she was born, I obviously was distraught, confused, anxious, etc.  I didn't know what to do or how to get through this mess.  I was lucky enough to reconnect with a Jr. High friend of mine who had recently found herself in a similar predicament.  Ok, so we had a major falling-out, but we were young and dumb.  As adults in awful circumstances, we came back together. 

Tiffany's water broke with Justice around 22 weeks.  I was fully dialated with M at 22 weeks.  She was put on bedrest, trying to stave off contractions.  I was put on bedrest trying to stave off everything.  She lived in her hospital room.  I didn't move from mine (with the tornado being my one exception).  Her miracle was born very early - at 27 weeks in September 2008.  My miracle was born early - at 24 weeks in March 2009.

I leaned on her through my ordeal.  How did she survive the bedrest?  How did she deal with the constant fear?  How do you not drive yourself completely insane with "what ifs?"  Where do you turn when no one around you really knows what you are going through?  She gave me hope.  I'd look at pictures of her sweet boy and smile.  He gave me hope.  This is what this fight was all about.  Tiffany fought for and with her Justice.  I was fighting for and with my Maryn.

Justice came home the day before Christmas 2008 on oxygen, but not much other help.  What a gorgeous boy.  And I know his sisters were doting all over him.  But May 2010, a cold sent him back to the hospital.  It was actually the same weekend we were in the hossy after Maryn's latest surgeries.  He was having a hard time breathing.  Damn this BPD/chronic lung disease.  Justice progressively got worse and was transferred to a different hospital. 

All along, I thought he'd pull through it just like he fought off and won the fight against Swine flu last fall.  But this time, his lungs gave out last week.  Justice died in his Mommy's arms.  I have never been so devastated for someone else in my life.  It all happened too fast. 

Well-meaning people often say "I can only imagine what you are going through."  Most of the time, no, they can't.  But I can.  This is all-too real to me.  One serious illness with M, especially for the next several years, and we could be in the same boat.  In fact, she was dealing with lung disease at the same time.  The fear is crippling.  My baby girl fought this bout off.  But what about the next?  Justice and Tiffany were my "goal."  See, things really can be ok.  So while I'm grieving for the family that lost their precious boy, I'm also grieving for that one shining star in our preemie life that has now left us.

Justice, the world isn't as bright and cheery without you.  While we never met on earth, you have changed my life and the lives of so many.

Someone find me that hope and light again.  Fast, please.

Family affair

So, yeah.  Maryn seems to like the hossy.  I tell ya - the kid wants to be there because the toys must be better or something!  Sheesh!  Gonna have to take her to Babies R Us for a shop-a-thon to keep her out.

Then, of course, Jaime wants in on the whole gig.  Friday night, while I'm with Maryn and talking to her awesome home nurse Miss Mandi, I get a panicked call from David.  He's at a loss for words.  Jaime was crawling towards him, then he flopped on to his side and because shaking.  Once it stopped, David called asking what to do.  Since J was still pretty unresponsive, I told him to just call the bus.  Talk about being in shock.  Really?  Did this REALLY just happen?  Seriously?  I was completely numb, bewildered, lost, confused, angry, etc.  I'm sure you English experts can give me the appropriate adjective for this, but my dictionary skills have left the building.

God bless Mandi who said she'd stay with M while I ran downstairs to meet up with David and J in the ER.  J was just crying.  When he saw me, he held out his arms and cried "mama!"  I was the only one who could make him feel better at that time I guess.  We just cuddled, rocked, and cried for a long time.  They kept checking on J, and sometimes he was coming out of it, sometimes you wouldn't get a bit of response.  Even when we tried tickling him.  Docs ended up doing a number of tests.  Labs, ECG and CT were all normal. 

While we were waiting for those results, J did start to come around for longer periods of time.  He would bounce a little bit and give me kisses.  So he was somewhat aware of his surroundings.  Since the tests were all "normal," they sent him home. 

We were supposed to get an EEG and appointment with the neuro on Monday, but of course that's worse than pulling teeth without novocaine.  Oh, let's just wait over 2 weeks for the EEG, and neuro will see him a week after that.  Um, are you fucking nuts?  Enter mom and dad threatening to throw a hissy.  We ended up getting the EEG moved to this Thursday (tomorrow) thanks to a cancellation, and neuro is on Tuesday.  So up in the air all over again.

We're BAAAACK.

So, readmitted on the 14th.  I'm still bitter about it.  She never should have gone home.  Stupid docs. 

We ended up down in the PICU after only a few hours because she was needing 100% oxygen.  Um, NOT good.  And they needed a better nurse-to-patient ratio with being that needy.  So off we went.  Friggin' pulmo that discharged her wanted a new size trach.  God bless the Nurse Kim and RT Brooke who dealt with me, because I was having nothing to do with it.  I said that we were just told that her size was fine.  I was not going to change anything based on his recommendations.  Really, you think I'm going to trust you after such a screw-up that soon after?  Do I look that gullible?  After conferring with the awesome pulmo Doc Nelson and on of our ENTs and their recommendation to up-size, I agreed.

We did make it up to step-down care in a few days.  Her O2 needs were still all over the place, but at least it wasn't as high as it was.  Small pleasures - it is nice to have a bathroom actually in the room.

But of course, we can't just have all good news.  We started noticing M crossing her eyes more.  Optho says things are stable from his point of view.  No pun intended.  Neuro-optho wants a CT.  Duh!  That's what I told them.  But of course, mom knows nothing.  Then he gets sick, so he has to postpone his visit.  When he did make it in, he found a weakness in the outer right eye.  So we are patching her left eye for 2-hours a day.  She hates it, but at least I know it isn't hurting her.  Just annoying her.

And her trach culture started growing crap.  Clebciela.  Common for trach patients, but still a pain.  IV antibiotics.  But don't google it or anything.  I'm sure I spelled it wrong.  So my misspelling will probably give you something like a degenerative joint disease or something.

And we are still there.  And I'm still annoyed.  Nurses keep messing with her O2 sat parameters, so who knows.  Thanks to that, we don't know if she's doing better or not.  Idiots.

Have I mentioned how patient I am?

Back home

Not as much fun as I'd hoped.  I was so incredibly glad to have her back home, but the worries started piling up quickly.

We got home around 6, and by 1130 that night, she was running a fever of 99.5.  Ok, so that's not REALLY considered a fever, but it's high for her.  M's norm is about 97.5-98.  By 130am, she was up to 101.5.  Crap.  Well, I think I was using more colorful language, but I am trying to cut back on that.  And her O2 needs were up again.  AND we didn't have any Tylenol.  Frickin' recall.  Sponge baths kept her stable throughout the night, then I ran to the grocery store for generic tylenol before work.  During the day, David took her to her eye appointment (all was ok.  recheck in a year.) then off to the pedi.  Chest x-ray and bloodwork ordered.  Still gunky, still suggesting viral.  Pedi wanted CPT (chest percussion therapy) at home with nebulizers.  Would have been nice if someone showed me how to used these things once they were delivered at home.  Thankfully the nurses knew what they were doing and were able to take care of it.  Of course, she was needing 4-5 litres that night too.

Next two days, she was stable, per se.  Still needing more O2 than I'd like, but not needing more and more.  Then we get to Thursday night.  I had talked with the pulmo that I liked that afternoon, and he wanted an aspirate.  Aka testing the gunk out of her trach to make sure they knew what they were dealing with.  I was hopeful because the nurse we had that night was really experienced with respiratory stuff.  I knew things weren't good when she had to wake me at 1245.  She had M up to 5L, and her SATs were still dipping into the 80s for long periods of time.  Time to call pulmo again.  He said everything we could do at home, we were doing.  Time to head back in.  So at 130 Friday AM, M, the nurse and I were on our way back to CHS. 

And I was pissed.  Why the he!! did they send her home like this in the first place?  She never should have been discharged until she was back to her baseline.  THIS is why I had questioned things before we left.

Post-op

The day of the surgery went well.  M looked really comfortable.  She "needed" to be held once we got into her room, or so the nurse said.  Mommy sucked it up and follwed orders.  :-p

They kept her on morphine for the rest of the day.  Of course, I wanted a Mommy dose.  But I had to get home to J, and Daddy stayed with M.

Day1 post-op:  I talked to my dad before I headed up to see Baby Girl.  Papa said she was doing well.  She had a bunch of visitors - Auntie Amy, Auntie Emily, etc.  It's nice to see that she's so loved by so many.  But when I got to the hospital, I was less than happy.  My girl was swollen.  Seriously.  I don't seriously panic often any more, but I was pacing, waiting for the nurse to get ahold of surgery.  Her right eye was nearly swollen shut.  Once the surgery resident came up, he was a bit surprised.  Her incisions all looked fine, but there was a ton of excess fluid.  He checked her eye to make sure it was still "working."  He immediately cut off all IV fluids (she had started taking food by her button) and suggested we keep her off that right side.  I asked how long until we started looking at increasing her diuretic, but he said "let's try this first."  Ok, I understand.  Thankfully, just a few hours later, the swelling was noticeably improved.  Whew!

Day 2 post-op:  They were talking about sending us home.  Um, NO.  Like I feel comfortable with this g-button that NO ONE has showed me how to take care of yet.

Day 3 post-op:  She needed more oxygen overnight.  Like up to 2 1/2 litres compared to her normal 0-3/4 litre.  AKA, mom freaks a bit.  While Surg was going to discharge her, I asked for a lung doc consult.  In walks pulmo #3.  Yeah, her lungs are a bit gunky.  Let's get a chest x-ray and some blood work.  Keep her until tomorrow.  At least she's uncontrollably happy.

Day 4 post-op:  Pulmo #4 comes in to discharge.

Detailed report

Ok, so it's MUCH later.  But I tell ya, the past 10 days have been a mess.  I'll take you through the surgery then post separately for updates since.

I did go to work that morning.  Figured it would give me something to do besides freak out.  Well, not so much.  I get a call saying they wanted to move up her time from 11 to 10.  :(  I wouldn't make it there before 10, but I didn't want her to have to go without food for that extra hour.  So I gave a thumbs up.  And then my thumbs started to shake.  I got there just after they took her back.  So far, so good.  Now get me a latte.  God bless my hubby.

1) Reservoir removal went quite well.  The nurse came out to tell us that she was asleep and that the docs were just getting started.  I kid you not.  Less than 10 minutes later, Neurosurg was out saying he was done.  I was nervous since it wasn't our regular guy, but man, this one seemed to do great anyway.

2) Lower bronch was iffy.  Pulmo couldn't get a 2.8 flex scope in past her vocal cords.  Bad.  So he went through the trach to take a look.  Lower stuff looked pretty good.  I think it was the right side that he said was a little floppy, but nothing that overly concerned him at this point.  Odds are, it would stiffen up as she got bigger.

3)  Upper bronch sucked.  Her airway has basically stayed exactly the same.  Still pretty severe subglottic stenosis (aka narrowing of her airway just below her vocal cords).  ENT was able to dilate it a bit forcibly, so we shall see.  She'll need a repeat bronch later this year to check.  Two big things they will be looking for.  A) did the dilation take and B) does controlling her reflux reduce swelling?  If her airway is still too small, we are looking at another dilation September-ish then another bronch next spring/early summer.  If things haven't improved by then, major surgery.  As I like to put it, they would have to go in and "crack the straw."  Split the airway length-wise and prop it open with a piece of cartilage from a rib.  Sounds like fun to me too!  In the meantime, she is entirely trach dependent.  It is a life-saving piece of equipment for her.  She could not live without it.  Gee, I just love hearing that.  Oh, and because her airway is so narrow, they don't want to try the passy-muir valve yet.  That's the thingy that would allow her to try to vocalize.  Well, at least he DID say both of her vocal cords were moving!  It was possible that one or both would have been permanently paralyzed by her heart surgery when she was a week old.  So take that you bad news bearer!

Honestly, I don't see progress being made.  Her airway hasn't improved since she was trached, so I don't anticipate much an improvement down the road.  Some may say I'm being a pessimist.  I say I'm just trying to be realistic and prepare myself.

4)  G-button/fundo went really well.  We were prepared for that part alone to take up to 4 hours.  M was out of surgery and into recovery from everything at about 3 1/2 hours.  Pedi surg did not have to open her up completely.  Whew!  Huge sigh of relief there. 

Now I just had to wait to see her.  She took her own good-natured time in recovery, so I went to the gift shop and bought her a Hello Kitty key chain.  I thought she might like to play with it hanging down from her playmat.  Tick tock.  Tick.  Tock.

Made it

She's through the surgery.  Did really well.  We're both tired.  Will give detailed report later....

S-day

T-minus 3 hours and counting.  BLAAAAAHHHHHH!

March on

Last weekend was our local March for Babies. I had never been a part of it before, so I am now sure that everyone could tell I was a total rookie.

We had done a bunch of fundraising online, coming close to my team goal of $1000. Not bad in my opinion! My team rocks. My parents and Nicki took over for David since his STUPID work wouldn't let him off. Carrie, Dan and Lucy (looking as cute as ever) were there. And a special friend Melissa from work. I can't explain to her how much that ment to me. So Sunday was just about walking for the babies.

I was worried I wouldn't know how to get to Mahoney. After living in NE for over 15 years, I had never been there. The long line of cars stopped on the interstate lead me to the right spot. Holy crap that's a lot of people! It was heartwarming to see that so many people took the time to do something for the babies. I never imagined it being that big.  News reports later said that over 4000 people were there!

After the panic of "what to do? Where to go?" we ran in to a few friends. Auntie Mandi and her family for one. 

Then we were off.  Ok, I was off like a snail.  Dang!  I hadn't done walking like that in years!  So much so that I, and the majority of my team, took the shortcut.  Well, the shortcut was a killer hill, but it was shorter.  And we made it to the finish line. 

If the weather was better, we would have made a day out of it.  They had firetrucks, trains, music, etc.  Just awesome.  But I still can't get over the awesomeness that was all of these people caring about the babies.

Luck, Love and Superpowers - we march for ALL the babies.  One of the reasons I march.