Cardiology Update

Hey all, it was a busy morning and we just got back a while ago.

Basically, M's echo showed the pressures unchanged from two months ago. Not what we were hoping for. However, compared to last April, the pressures have dropped significantly, which is a good sign, but they won't really be able to have exact numbers until they do a cath.

They will be scheduling her cath in July.

But here is where my heart drops a little (actually a lot) - if there is something that needs to be changed structurally in her heart - they are not sure about Moriah's reserve to handle another open heart procedure. However, we will not GO THERE until we ACTUALLY HAVE THE RESULTS.

If there isn't anything that needs to be changed anatomically, and her pressures are still on the higher side, we continue to pray that they will subside as she grows older and grows stronger.

We, as her parents, are encouraged, especially after seeing the leaps and bounds that this girl has made. No more infections. No more fevers. Moving. Grooving. She's doing it all...

Here are just a few pics from today

Upon arriving at the Heart Center, M immediately notices the cartoons they have playing...I think we have here the first signs of a TV addict =)

Her awesome transport team - Jennifer, Renee, and Tac

Justin with Moriah's most excellent RT Shawn. She's getting her echo here.

Holding my heart =)

And Moriah looking like such a big girl sitting in her stroller (and Justin's thumb that got in the way while taking the picture)


So there we have it. Sorry this is so concise - I'm wiped out...and to be honest, I'm a little upset about how devastating the talk was on Tuesday compared to how it really went today.

But we know what to pray for specifically, and we will keep at it.

There is still some hope for us to hang onto, and you can definitely count on us to take it and run with it...

Thank you all so, so much for your support and prayers. We are honored and humbled to be walking this joureny with you.

Praying for Moriah's Heart

Hello friends and family,

This is Julie, one of the Head Respiratory Therapists at CRC. She took Moriah to her cardiology appointment the other day when Justin and I had our presentation. Julie is one of the most hard-working people we know, and inspires everyone around her to do the same. We knew Moriah was in incredible hands until Justin and I could get to the clinic.

In clinic, Moriah had an echocardiogram that Dr. Wright reviewed. The results are unchanged from the last echo, which is not what we were hoping for...we would have loved to have heard that her RV pressures improved. While, the pressures have come down since M was really sick in the hospital, there is still room for improvement. Dr. Wright has scheduled a follow-up in June, when she wants Moriah to have her next heart catheterization. Dr. Wright said she was in the middle of the road about the progress for Moriah's heart, and that she couldn't say it was better, and couldn't say that it was worse. But what we don't want is for her pressures to get higher.

This is my proposition for all our prayer warriors:
PLEASE PRAY FOR THE PRESSURES IN MORIAH'S HEART TO RETURN TO NORMAL BY THE TIME SHE HAS HER HEART CATHETERIZATION IN JUNE!! WE KNOW HOW FAR SHE HAS COME, AND WE KNOW THE POWER OF PRAYER. ALL THINGS ARE POSSIBLE WITH GOD. WE ASK FOR COMPLETE AND TOTAL HEALING OF HER HEART.

This is a picture of our beloved cardiologist, Dr. Wright, with Miss M


Despite the news, you can see how much we enjoyed our munchkin that day. Who knew a cardiology appointment could be so much fun?

We also have some more exciting news:

Moriah's wound has healed to the point where she does not need surgery anymore! Can you believe that?!?! Everyone was in disbelief...all plans for surgery were canceled. It's amazing!

Thank you all for your continued prayers. We feel covered by them.

Much love,

the Nelsons

A Hot Mess

Been a rough few days with
fever
runny nose
yucky green mucous being suctioned out of trach
BAD breakdown around neck from trach ties (does anyone know how we can buy danny ties from la?)
bleeding bum from terrible diaper rash

M was a mess today.
I pray to God that we can get past all of this soon...would love if it was by tomorrow ;-)
Otherwise, we love her Nurses and RT's at the center. They have been great, and it is refreshing to see them love on all the kids here.

Thank you all for your prayers.
Love,
Victoria

The lump in my throat is back.
M came back from OR. Still irritation and some fresh blood at site of vessel. They can't get a hold of Stanford tonight. They will try in the morning.
Heart rate has been high today.
Been upping her sedation througout day.
However, her cheeks and leg are starting to get that awful, horrible red hot rash that she gets with her infections.
Tried talking to the Attending. He wasn't any help and contradicted everything I said. He did not hear me at all.
I'm left feeling helpless. Hardly reassured. And there is nothing I can do right now but pray as I sit here watching the Nurses poke Moriah over and over again because her line isn't drawing and her blood keeps clotting. They need to check her labs.
This is just...I don't even have to say it. You know.

We are just letting our tears flow at this point. We cannot hold them back any longer. We just got thru another incredibly stressful afternoon as moriahs heart looked like it was ready to beat out of her chest and the doctors and nurses were in here bagging her because she was not ventilating well. These scary moments always bring to mind if God is going to take her or not. We know how quickly things can happen. There have just been too many of these close calls for us and our hearts have been tormented.
When people say that moriah is going to be fine, we know that there is only one person who truly knows that, and it's God. He has ordained every single one of her days, just like yours and mine. There is no telling when anyone is going to go. Nothing is ever a guarantee - which makes you live appreciating every moment, but most of all, makes you want to get right with God...and know what is going to happen to you after you die. It's life simplified.
They have started moriah on antibiotics and her heart rate is finally coming down. There is still blood coming out of her trach when she is suctioned. We just now hope that she will b stable enough to be transported so that the issue with the vessel in heart can be addressed.
Will continue to update.
Love
Victoria

urgent prayers

We can hardly believe it. Moriah is septic again. She has a uti and I believe a respiratory infection as well. We just pray that this gets under control fast. Her heart rate was in the 180s and had fevers earlier. We r using cold compresses and she is receiving extra fluid bc her blood pressure was low.
We have no words left. Our hearts r so heavy.
This is very discouraging.

change of plans

There has been a change of plans. As more people were starting to look at the ct scan of moriah, there was more uncertainty as to where the source of bleeding was coming from (Moriahs anatomy is so complex). With that said, she is being transferred to Stanford so that they can address the situation further. Dr. Hanley, after all, has seen her heart with his own eyes.
M will continue to be sedated and paralyzed =( and everyone is dicsussing the issue of transporting her safely. So far, the plan is for transport to take place Sunday, but we all know how our "plans" work out.
We seriosuly have our hands open at this point.
We will continue to stand behind Moriah and do whatever it takes to make sure she is all right. Any parent would do the same...
Til then, we pray for her to continue to be stable, and we pray that there is no more bleeding!
*we also pray for guidance as to what to do for moriah in the long run. Last time, even though we wanted to move up to Stanford, there wasn't an option because there isn't reliable home nursing or a home ventilator program in the area. However, we keep being brought back to the hospital. We just don't know what to do and we pray for wisdom and some clear cut answers*
lots of love,
Victoria

Hey everyone, I just wanted to give a quick update before my phone dies, even tho I don't really have any news. We r back in the picu, and m had a ct scan earlier. Still don't know the results but they will b able to c where exactly the bleeding came from. The ent docs who did the bronch saw a vessel from her heart pulsating, and they r wondering if the trach was rubbing against it and caused it to bleed...but again, they won't know until ct results come back. For now, m is paralyzed and stable.
We will update u when we find out more.
Thank u for praying. We take joy in the fact that we still have her and she is stable right now. We know God is with her. These scares always take us back to the basics, and bring us to our knees.
Love
Justin and victoria

This is Amy updating the situation...They did the bronch and saw there is a collateral from her heart that is bleeding. The good news is that it is not actively bleeding anymore but they are getting in a CT scan to see more. They are talking about having to go in to do more intervention. They don't know if this can be done through a cath or open heart surgery.

This was an incredibly traumatizing event and Vic and Justin just ask that you keep Moriah in your prayers right now.

Abdominal Migraines

M has had 4 breakthrough abdominal migraines this evening. We haven't seen them this bad since before she was on the Neurontin. They're really hard to watch as her heart rate shoots up to 160's, her sat go into the 80's, she's struggling to breathe from the pain, she's crying, and is super sweaty.
These are heart-wrenching to watch.
Her CO2 is super high, and we pray the she doesn't pass out from this.
We hope that they can get this under control .

Please pray for her.

pneumonia

sorry for my grumpy post last night. i was frustrated.
we found m has pneumonia.
they started antibiotics.
definitely not going home next week. but i dont even care where we are. i just want her okay.

they also talked to me about the final results of the ct scan of her head.
this is for our charge friends:
on her left ear, she doesn't have the cochlear nerve. there is absolute no hearing on her left side.
both sides, she has abnormal semi-circular cannals, which explains why she can't balance herself very well...was told some kids might never walk with this, and some might - but to ask our friends in charge about their experiences with this. (i never thought that i would have to be dealing with this as well - i thought that her heart was our biggest issue...then it became respiratory...now it is everything under the sun - from hearing to walking to talking).
on her right side, she might be a candidate for a hearing aid or cochlear implant, if needed, in order to salvage what hearing she has left. she will need an mri to determine all of this.

justin and i will probably schedule another care conference. we've been doing this for months and months and months now. the other thing is that they stopped her prophylactic antibiotic (the bactrum) here because they didn't know WHAT they were treating, but im wondering if she needs to be put back on it. she just got this infection in no time...and stanford saw that she simply couldn't go without antibiotics, even they didnt know exactly what they were treating either...it was at least some protection against all the gram-negative bugs that she was getting.

can i get an aaaargh? =)

all right. will continue to update.
love
victoria

The Hospital is our Home

I have to just face it. We're never going to get out of here.
Moriah has been miserable tonight... crying, fever, tachycardia.
They drew cultures. We will see what they show, if anything.
Justin and I are so sad. We just want to see Moriah happy and stable - for more than one week. Ha. I don't even think we went 7 days, and we have another infection.
Something is going on...and yes, I know that's what happens when you're in a hospital - you're more susceptible to infections...but, I just know there is something more to this.
I just pray we figure it out. My little girl has been through enough.

I HATE to even be writing this, but we noticed M's heart rate creeping up ever so slightly. We all are keeping an eye on it.
sigh.
Please, no infection!
We are ready to go home!!!!!!!!!!!!!!!!!!!!!!!!!!!!! =(

Prayers for Victoria

Prayers for our new friend in CHARGE, Victoria Faith.

Victoria's story is very similar to Moriah's, and this sweet girl and her parents, Lisa and Eddie, have been enduring 6 long months in the hospital.

Heart surgery, recurrent infections to the point where they almost lost Victoria - on several occasions, and now a tracheostomy.

My heart goes out to this family.

They recently started a blog so that you can catch up on the their story.

Lisa and I have been emailing and talking on the phone...when Lisa was recalling the day that they almost lost Victoria which was not too long ago, this mama's heart broke down and cried.

We only know too well what they are going through.

Please, please keep this family in your prayers. I have tears streaming down my face as I ask this of you. There is so much hurt, pain, and fatigue involved. This story hits so close to home.

And we would simply be LOST without the support that you all gave, and continue to give us.

We stand together in prayer for Victoria and family.

Resistance

***UPDATE: Another Doctor came in and said we received the wrong info, and said that Moriah actually grew a different bacteria in her lungs called Enterobacter (do any of you trach mamas know of this bug? this is a new one for us), and this is resistant to Bactrum, not serratia...so I think this is much better news than before***

I have a heavy heart.

Moriah has confirmed influenza A as well as a bacterial infection in her lungs. They identified the bacteria in her lungs as Serratia (again!!), and Dr. Ross, Moriah's primary Infectious Disease Doctor, let us know that it is now resistant to her prophylactic antibiotic, Bactrum.

At Stanford, they put her on Bactrum because she has been having so many Serratia infections...
Now it won't even work for her anymore. This is NOT good.

Justin went to the Doctor this morning, and the Doc wouldn't give him Tamiflu even though he let her know that Moriah has confirmed Influenza A. They did a nasal swab, and told him to go home. However, I just let Dr. Ross know, and he said that Justin should definitely be on Tamiflu...so he had to call the dr.'s office back, and they are sending a prescription in to the pharmacy right now.

I'm really tired too, and I pray that I stay healthy.

Andrea, you said you sound like a broken record with the fact that you keep saying you're praying, but I'm really the one who is the broken record as I have been asking for prayer for the past 19 months, and especially for the past 10 months while we've been in the hospital.

I wouldn't want to be our friends and family right now...we're exhausting to be around.

But, I am thankful for those who continue to put up with us, and those of you who still continue to pray...
We love you guys.

Hey everyone,
Sorry I didn't update sooner. It has been a very busy weekend.

M is still not back to baseline, and continues to have a high heart rate, the rash is still flaring up, and she just had another fever last night.

She is on day four of Tamiflu, and I guess they usually stop it after five days. However, I'm wondering if they are going to extend it given she still has symptoms.
Her chest xray is cloudy, which I'm not surprised about because I'm suctioning her so often.

Nothing has grown from the respiratory culture yet except for some gram negative rods. But they do not yet have a bacteria so they aren't sure if it is colonization of bugs in her trach or if it's truly an active infection...they are treating it as if it were an active infection, and are leaving on the zosyn.

Oh, and I just got a call from Justin that his throat hurst really bad. He's going to the Doctor right after work today...I guess I'm going to have to do this on my own now...

Sigh.

Will update if there is anything new.
Love
Victoria

this one makes me nervous, guys. the flu can be really scary.
plus, they think she might have a bacterial infection on top of it - still waiting for cultures.
luckily, she's still her typical, happy self, but her heart rate continues to climb, her rash is spreading, she is starting to have fevers.
we just want to make sure she gets treated properly, and as always, that the care will be proactive. so far, they've been very on top of it, but we hope that if she continues to get worse, that there will be no problems or issues having her transferred to the PICU if need be.

it's just been really tiring for justin and i, with the constant beeps and buzzes going off, having to page the nurse to come in, as soon as we sit down to take a break, something else is alarming or moriah is needing to be suctioned with all her increased secretions. we are not resting very well, and we have to make sure that we stay healthy in order to care for her.

we do feel your prayers covering us though, and we are thankful for your continued faithfulness, love, and support for us in this oh-so-tiring, but oh-so-blessed journey.

please continue to keep her in your prayers, put her on prayer lists, etc. i have the feeling that we are going to need strength (the supernatural kind!) for this one.
thank you.
love,
victoria

Things aren't looking too good...

Moriah continues to get worse.
She is definitely infected - rash and high heart rate.
They did a respiratory culture, and checked for influenza, which is going around the hospital right now.
The results came back indefinite...not positive but not negative, so they are re-testing (including a test for swine flu, which has also been going around here)

We actually have been incredibly pleased with the nurses and doctors (the attending pediatric physician reminds me of Dr. Roth at Stanford, who is an excellent Doctor with the most wonderful, kind demeanor). They have been checking in on us many times throughout the day, and they have been able to see how quickly Miss M can turn. They are starting her on Zosyn and Tamiflu right now, and then will have a few back-up antibiotics in case she does not improve with these.

Whenever Moriah has an infection, Justin and I are completely on edge because we, too, have seen her turn for the worst within hours if she does not get the right antibiotics on board. They drew cultures to see if we can pinpoint a bacteria, and like always, those wont come back for several days, so we hope and pray that the zosyn and tamiflu will do the trick for now.

We ask for prayer during this time.
Love always,
Justin and Victoria

Abigail Elyse Chez

Our dear friends, Adam and Terra Chez, welcomed their daughter, Abigail Elyse Chez, into the world yesterday!!

She is absolutely beautiful.
They delivered at Stanford, and are still awaiting tests to see how Dr. Hanley is going to proceed with Abby's heart surgery.
Check in on this sweet family at http://www.lifewiththechezs.blogspot.com/
and please keep them in your prayers. We know we couldn't have gone through all of this without all of your support.
Thank you so much.
Love,
Justin and Victoria

full force

Infection is going full force now. Fever, tachycardia, crp and white count high...
Immunology came yesterday and saw that a couple of her numbers were low in the workup that they did on her. They aren't sure if its because they took her blood sample when she was getting over an infection or if it is because this is truly a problem with her immune system. To be honest, I'm hoping it is the latter...that way we can just do monthly ivig shots to boost her immune system, and then we wouldn't have to do further investigating...
At least moriah is more with it today than yesterday. Ha. You know you are not taking things for granted when you get excited that your child isn't sleeping the day away because he or she is so sick. Be grateful for good health.