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My New Niece

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Emma HAS to get better real soon, my eyes are becoming wet way too much during the day!:zen:
 
Thanks everyone. I've been telling Emma's stories here on the forum since she was born, and it just adds to the feeling of TWT being 'family' for me.

We hope you all had a wonderful thanksgiving! As a dear friend of mine had put it, " We hope you gobbled until you wobbled!".

This thanksgiving we gave thanks for so many wonderful things and events. We gave (and still give) thanks for our family who always visit and are our pillar of support, our friends that whether they are near or far they are here to lend us a hand, the nurses that care for Emma, the doctors and their experience to help her get better. We give thanks that Emma's hospital stay happened now and not later because who knows what would've happened if certain things weren't detected now. We gave thanks for each other because truly, Heath and I make a great team and for our angel Emma for teaching us so much about hope, faith, compassion, perseverance, courage, patience, acceptance, appreciation, awareness, how to embrace each moment, the importance of knowledge, the power of prayer, and ultimately about unconditional love. And now that some of you are probably reaching for a tissue right now like I am :o), here is how Emma's health has been since last Wednesday, Nov. 26 until today...

Emma's health has been pretty stable. So stable in fact that on Friday the doctors decided to wean her off the nitric oxide - (f.y.i. our bodies naturally produce these molecules) - this is what helps open up her arteries in her lungs since her heart is taking a shortcut and not really sending blood to these arteries and so these arteries are not getting what they need to help with the flow of blood to her lungs - this is pretty much called pulmonary hypertension. By Saturday she was completely off and appeared to do well. Sunday however through an echo-cardiogram (ECHO) it showed that her heart seemed to need the nitric oxide and surely enough she wasn't keeping up with her oxygen levels. So yesterday they put her back on the nitric oxide and had another ECHO done and it showed improvement in her heart. Will she be on medication for the rest of her life for pulmonary hypertension? - we don't know. The doctors are not sure yet if it's because of the pneumonia that she developed pulmonary hypertension or if she always had pulmonary hypertension and it did not affect her until now. Time will tell...patience is truly a virtue.

Her pneumonia is getting a little better. Her chest x-rays shows that it's in a different spot everyday. One day it's on the left, another day that it's in the right upper, or right lower and so on. I joke with the doctors saying that it's playing "catch me if you can" game. Gotta laugh sometime, right?

We haven't seen the doctor today yet but as soon as we get some more information and depends what happens throughout day be assured that we will keep you updated.

Love always and forever,
Heath, Kat & Emma Leigh
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Sure wish I could shoot you some of my unused vacation days
 
Moose said:
Sure wish I could shoot you some of my unused vacation days
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Just over a week until I fly up there to see her (& the rest of the family). I was sure she'd be at home resting by the time I came to visit but the ups & downs continue:

Emma Update: Dec. 2

Today's report as per her doctor today:

* Today's ECHO - pretty good
* Today's Chest X-Ray - pretty good
* Her body reacting as to being off the Nitric Oxide - pretty good

So far so "pretty" good today!!!! WOO-HOO!!!! Oh Happy Day!

She still has little bacterias (pseudomonas & eccolli) in her breathing tube but they are giving her antibiotics for that. She is also getting tested for RSV (another respiratory virus), and an infection in her urine just to be sure she's ok since she is still getting low grade fevers.

But so far today has been going super! Tomorrow will be the big hurdle when they take her off the norcuron (the chemical that paralyzes her body so it can rest and let the machines and antibiotics do their job) and hopefully when she awakens she will be able to keep up with her oxygen levels and let the ventilator do it's work just a bit longer.

Stay tuned for more of Emma's progress....WOO-HOO! Your positive thoughts and prayers are working!!! THANK YOU!!!
xoxoxoxoxo
Heath, Kat & Emma Leigh (our little Oscar de la Hoya!)
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And then:

Emma Update: Dec. 3

Well, today the doctors decided to wake up sleeping beauty. They stopped the norcuron (the chemical that paralyzes her little body) and it is so good to see her awake. She is all twitchy and squirmy and we don't blame her. Who would like to wake up with a tube down their throat??? Any who, she started to gag on it and threw up quite a few times and her oxygen levels dropped. This gave my poor mother-in-law a mini heart attack (poor Nana ). Now they are giving her more sedatives to keep her comfortable and not drop her oxygen levels. Besides this, that's all that's new today. We are stuck like glue to her more so today than any other day because she's awake now.

Heath has been amazing throughout all this. He's a complete mush with her now (more than before) especially since we haven't seen her awake in about a week or so. I just had to add that my husband ROCKS!

Well, we'll keep you updated. Hopefully she'll be calm enough and maintain her levels that the next news we're hoping to hear is that they will drop the settings on the ventilator and soon off with the tube. Still hoping, still praying, still believing in miracles...

Love,
Heath, Kat & Emma Leigh
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And then the news today:
Emma Update: Dec. 4

Hello Everyone,

Last night was not a good night for Ms. Emma. She had a little set back that she ended back to being chemically paralyzed (on the norcuron continuous drip). For the second time, it was too many changes at the same time and now the doctors realize that her lungs are super fragile that when they do make a change it has to be done in really slow baby steps.

We were a bit scared since this time her reaction to being taken off the nitric oxide and the paralytic was worse than last time. This time around, she turned pale, her extremities were cold (fingers and toes turning blue) and her torso and her head were super hot. She spiked a 102.5 fever within seconds and how many changes in the ventilator were done, her oxygen level was really low. This is what the doctors call "clamping down". It was a little nerve wrecking but we stayed with her until 4:30am that we saw her stable, no fever, the temperature was even throughout her little body, her oxygen levels were high and even, and she looked comfortable and peaceful.

Today we're thinking it will be a quiet day since she's back on the paralytic and nothing else will be done so that her body can recover a bit from yesterday.

Thank you for keeping us in your thoughts and prayers.

Love Always,
Heath, Kat & Emma Leigh
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We are praying for the family and hope she gets better soon!!
 
Many prayers sent your way and your brother's way. I've read so many things here that have made me weepy. Thanks for keeping us updated. I look forward to seeing more pictures of Emma and reading more updates.
My best friend's son was born 11 years ago at 1 pound 11 ounces. He was fitted with glasses, hearing aids, and a feeding tube before the age of 2. Emma is a strong and a little charmer like him!
 
The latest. While not good, it's not (all) bad either.

Happy Holidays from the Nelson's!!!

Well, unfortunately our holiday spirit is still in the hospital. She's so amazingly strong and beautiful. She's our Christmas miracle and the light to our Menorah. This weekend we were so happy to witness a laugh. You see, there's a leak in the breathing tube and she was so active that a "ha-ha" escaped from her throat. Heath and I looked at each other and we were stunned at first. We asked each other, "Did you hear that?" All that was left was for us to do was to start crying. If you look at her now, she looks great; she's active, smiling, kicking, wiggling, squirming. Inside her little lungs though, not so good. Emma's lungs are weak and full of mucus (unlike her spirit!).

Emma has been getting fevers daily. Doctors aren't sure what's causing the fevers. There are more departments on board now (infectious disease, oncology, GI) to see what is going on or if they can figure something out.

Regarding the trach, most likely we are going ahead with it. I printed some research and have gotten emails from dear friends that know of other parents who's child is on a trach. To be honest, when I first started to read up on the trach I read the first paragraph and I started to get queasy in the tummy. Maybe next time I should have a shot of tequila or something before I read it again, ha ha. But even if we agree with doing the trach nothing can be done unless the fevers are gone.

We wish you all the best this holiday season and upcoming new year. May the fat man in the red suit or Hanukkah Harry bring you and your family lots of joy, peace, health, and love.

Love always and forever,
Heath, Kat & Emma Leigh

"Courage, sacrifice, determination, commitment, toughness,heart, talent, guts. That's what little girls are made of; the heck with sugar and spice." - Bethany Hamilton
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You would think if her lungs can clear some, a lot of things would improve? I don't know, but I do know prayer is in order. It helps in all situations. She's on my list. Hope everyone can enjoy her this holiday and things continue to improve.
 
A Christmas update:

Hello Everyone!

We hope everyone's holiday was wonderful. Our holiday was a lot better than what we thought it would be. My family came to the hospital on Christmas Eve. Aside from their company, they brought Christmas dinner here at the hospital. We set everything up in the hospital cafeteria - they even brought over a table cloth with baby Jesus in the center of the table along with Emma's picture with Santa from last year. After dinner we prayed and sang Christmas carols as if we were home. It was truly special. The following day Heath's family came to the hospital and kept us company with lots of laughs and thanks to my sister-in-law and her fiance (and his family) a cup of wine!

Emma is doing well. She's such a strong little being. She is still having fevers and unless the fevers go away the doctor's can't do the tracheostomy. She's a chunky monkey, too! Emma has her days and nights mixed up. At 4am she's having a party in her crib (literally). She gets upset if we try to put her asleep at that time. She gets a pouty face, and extends her arms and wiggles so much that she sets all the machines off. It's so funny and so good to see that feistiness in her! We know God has a plan for her. The trick is to have patience and faith in Him and wait for the plan to unfold.

May the New Year bring you and your family lots of love, peace, health and happiness (and the way the economy is...prosperity!).

From our Family to yours,
Love Always,
Heath, Kat & Emma Leigh
Forever, The Nelson Family
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Emma got through surgery just fine just over a week ago and the trach is her key to going home. Heath & Kat are getting up to speed on working the new machine(s) at home, and are looking forward to a potential discharge date of the 16th or 19th. :sun:
 
I'm glad to hear Emma has improved. That is truly great news. How are her parents holding up?
 
You must be the best aunt.... bringing your load of biker friends into the mix! Yeah... well... I'm praying for your niece as well, hard core as I am. Seriously, I wish the best for her and the rest of your family. Your brother and sister in law have my utmost respect (for being so strong) and admiration. Wishing all of you all the best.
 
Thank you all for your support.

Emma was looking at a potential discharge date of the 16th or 19th, but it's been pushed back a little as they struggle to line up the nurse(s?) that will be helping them at home.
 
Finally, some great news!

And here's the update....

WE ARE HOME! WOO-HOO! It's the best birthday present ever!!!
We came home yesterday by ambulance and were in our blessed home at 2:45pm. The day nurse was already here and so was the respiratory therapist to set everything up. The ride home was so surreal; all I kept thinking was "Am I dreaming? Is this really happening?" I felt like I was floating.

Emma was laughing all the way home. She's in her Tinkerbell room all tucked in now with her night nurse. (It's actually 2am now...) She will resume therapies hopefully on Monday.

It was sad leaving the hospital that was pretty much our home for the past 10 weeks. And we got to know everyone so well that when we left today, even the housekeeping lady gave me a hug, lol!

So, we are out of those woods, now it's time to continue the journey. But as I said before, at least now we have a flashlight and part of a map. The trach and the vent situation is a bit overwhelming but we just have to take it one day at a time. We're trying very hard for our condo to look like a home and not a medical clinic, lol. We are seeing what works and where to put Emma's medical supplies etc... Going out will be quite a challenge as well but deep down, I think we'll be all right. It's a lot to take in, no doubt, but with our dedication and love of our little family of 3 and all of you with all your emotional support and prayers, anything is possible. (When I wrote this, I envisioned us as the new Verizon's customers you guys being our backup network...ha!).

We are just so happy to be home. We will definitely keep you updated and I will take pictures of Emma in her Tinkerbell room.

We want to thank all of you soooooooo much for your endless and unconditional support & prayers. You guys are amazing! Thank you for making our journey in the woods a bit easier with your thoughtful wishes.

Thank you once again,
Forever grateful, forever thankful, and with lots of LOVE,
Heath, Kat & Emma Leigh Nelson
Forever, The Nelson Family
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Rebecca, it is really great to have them home, but I still have to ask - how are their finances on all of this? It sounds very expensive & I hope insurance is involved, but I doubt it would cover it all.

Maybe this should be in a PM but I think other folks are thinking this, too...
(or maybe rich Aunt Becca is handling it all ;-) )

God bless 'em!
 
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