Hey, remember our ER visit from Monday?

Repeat last night at 8:00pm.  Geesh.  When Lydia's trach comes out she shows no distress and her O2 saturations are 95-100%.  She's totally fine.  So, when it happens and we don't notice because of her cheek chub, her stoma starts to close and we can't get a trach back in. 

I called 911, about 4 firemen and a paramedic come in the house, followed by the 2 paramedics on the ambulance.  Get our stuff, grab some pjs and all of Lydia's trachs...we have a collection of about 6 now, make that 8 after this morning.  We ride in the ambulance and check into the ER. Dan followed behind us and could probably see our funny faces the whole way there. ER docs can't get the trach in.  ENT comes to the rescue and puts the trach in.  Sends us on our way.  Home by 11:45pm.

We cancelled night nursing since we knew we'd be getting home late.  We tried to go to sleep around 12:30am and woke up all through the night.  Lydia was sound asleep every time.  Just another Riggs family slumber party!

This morning we had an ENT follow up with Dr. Shah that was scheduled during our ER visit on Monday.  Lydia's stoma looked great, nothing like last night - it had definitely been closing and the trach out awhile.  She put in a Pediatric Bivona 3.0 instead of the NEO Bivona 3.0.  This is a longer trach that goes a tiny bit further into her trachea.  We also got the cap today, which Lydia is to wear for an hour if tolerated and increase by an hour each day.  We need to work up to wearing it all day long.  Then we can talk about sleep studies!  

I'm a walking zombie today.  Coffee.  Diet Coke.  Repeat.  

Mercy Mondays at Pie Five

Please, if you like pizza, if you like lunch, if you like dinner, eat at any of the 10 Pie Five locations in the KC metro on an upcoming Monday.  Pie Five is being very generous and giving 5% of their Mercy Monday proceeds to Children's Mercy Hospital.

Exciting and probably with a lot of waiting rooms.

"You live a more exciting life than anyone else.  Exciting and probably with a lot of waiting rooms."  ~JT

JT summed it up in that one text she sent after I told her we were all home and doing well.  All home from where?  The CMH emergency room in downtown KCMO.  We like to keep it exciting.

Lydia decannulated today and her nurse couldn't get the 3.0 trach in, that's the normal one, or the 2.5 trach, that's one size smaller in case the normal one can't go in.  Yikes!  No trach.  911.  Okay, so Lydia didn't have a trach in.  That's her safe airway people.  Lydia didn't have any oxygen.  Well, we had it, she just didn't need it.  Through all the trach change trials, the call and wait for the paramedics, the flirting with the firemen (they always show up when I'm not home!), the ambulance ride, the chatting with the ER nurses, etc., lil' miss look at me had O2 saturation of 100%.  That is awesome-sauce.

Lydia really did have a grand time riding in the big rig, chatting up her new friends, and exploring a new part of CMH.  By the way, people all over that place know her, not sure how, but one of the ER nurses did.  Back to the story.  I arrive, Lydia arrives, I walk into her room and am greeted by my smiling baby with crazy hair, sitting up, kicking her feet and stats of 100% O2.  She's a ham.  I talk to her nurse, talk to the ER nurses, sign some stuff, and then look at her stoma, that's the hole the trach goes in.  Yikes!  No hole.  Instead there is some granulation tissue prolapse - some what? - gnarly skin growth coming out of the stoma.  Some ENT nurse in extra bright scrubs got all excited and sent of picture to Dr. Neff and Dr. Shah.

Anyway, it was a pretty big event to get a trach, any trach, back into Lydia's stoma.  They tried a lot.  There was suctioning.  There was scoping.  There were cameras and some scary looking tools.  There was silver nitrate and cauterizing.  There was blood.  There were 6 to 8 people surrounding Lydia at any given time.  Lydia was screaming bloody murder.  Very few real tears though.  Someone gave her oxycodone that dribbled down her leg because the med port in her g tube wasn't shut.  Someone gave her more oxy.  We were one try away from getting to go visit the operating room.  I say we and I mean the super fab doctors and nurses at CMH and our very own home health nurse, aka Lydia's Bestie.  Sometimes I just get to be mom and stand back with the Home Vent team nurses while the not so fun stuff happens.  Then I can be the hero who snuggles and cuddles later.

Finally, new kind of trach goes in and Lydia is ready to snooze and eat.  She's HANGRY!  ENT was pretty stoked about her 02 sats and her Passy Muir trials so they are inviting us back next week for a trach change and to receive our cap.  I collected all the details I needed.  Our nurse collected all our belongings.  The three of us waited for our knight in shining armor to arrive with all we needed to head home.

What lessons did we learn today?

1. Lydia apparently can breathe super well without a trach and knock the socks off the O2 sats.
2. Lydia impressed Home Vent and ENT so much that we get to start a cap trial next week.
3. Mom has understanding coworkers that don't bat an eye when I say, "I'm out, later."
4. Mom remembers to hand off new FMLA papers in the heat of the moment to save a trip later.
5. Mom has an impromptu conference with Home Vent to discuss blended diet, Zyrtec and new pump.
6. Mom is resourceful and steals stuff off of carts to entertain her child and for teething purposes.
7. Dad rescued us with car seat, diaper bag, suction machine - all the necessary things to get home because when you take the ambulance somewhere it's a one way ticket.  Uber?
8. Lydia is a ROCKSTAR!

And now a photo dump.

Miss Prissy Veins Part II

Lydia had a whole bunch of blood drawn on April 13th, remember?  The results are in!

Calcium Levels: Looking good and we've taken her down to one dose a day.  She'll have her blood tested again in June and hopefully come off entirely.

Vitamin D Levels:  Looking good and we're keeping her on one dose a day.  Who doesn't need a little extra vitamin D?  It seems to be all the rage.

IGM or Quantitative Immunoglobulins: Levels are a little low and that is typical of kids with 22q11.  Igs are antibodies produced by plasma cells that are a big part of our immune system.  Igs are produced in response to bacteria and viruses.  Testing for  Igs lets us know if Lydia can have her 1 year live vaccines.

CD8 or T-helper Cells: Levels are low at 113 and should be around 200.  These levels should rise in time and with age.  CD8 cells are used by the immune system to attack infection, they're the killer cells.  Testing for CD8 levels lets us know if Lydia can have her 1 year live vaccines.

So, all that adds up to no live vaccines at 12 months.  This is something we knew was a very real possibility because of the 22q11.  A lot of kiddos with the deletion have a compromised immune system.  Lydia has done very well and has only been sick once...with pneumonia...after heart surgery...in the hospital.  

We'll test Lydia's blood again at 16 months in hopes of getting live vaccines at 18 months.  The Measles, Mumps and Rubella vaccine and the Varicella (chicken pox) vaccine are the two in question.  Live virus vaccines are just a weakened form of the virus.  If we give these to Lydia before her counts are up, she could very easily get the virus we're trying to prevent.

Until 16 months then.

Run for Little Hearts

Run for LITTLE Hearts, the CHD babies awareness 5k, was last weekend, May 1st.  What a great way to kick of spring and the month of May.  We took to the streets of downtown Lee's Summit and had a great time with friends and family.  We had life long friends, new neighborhood friends, wonderful coworkers and our families join us and support Lydia.  We just found out this weekend that LOVE 4 LYDIA officially won the largest team award!  YAY!  I have a lot of pictures from the event and will share them with you all. :-)