Update - UPDATED

ohashlet · October 2011

We rushed to Children's all the way across the city to run tests. They took two vials of blood which is hopefully enough but they couldn't take any more because his weight restricts them. If it's not we'll go back for another draw. They also did a sweat test which was the most stressful 5 minutes of my life. Some of the labs should be back by 5.

They're concerned it's cystic fibrosis or some other terrible something. That is what has me freaking out.

We go back in to the gastroenterologist in one week. If he hasn't gained a significant amount we're looking at hospitalization for observation and more tests. In the meantime I have to pump and fortify my BM with Elecare, which my insurance does not cover. We were given two big sample cans but it comes to $104.50 per can so I'm going to call the insurance company with the diagnosis and see if they can allow coverage.

I feel like garbage. The words "failure to thrive" were written all over his paperwork and his writeup from the Gastro doctor. He isn't even on the growth chart for his height, and to be at the 50% for his height he needs to gain 4+ lbs. We have to do stool and urine samples and bring them back ASAP.

I feel like I'm missing something and probably am. Sorry for any spelling errors I'm on my phone.

UPDATE: She called with some labs. His billirubin rates are very high. They're 3x they should be. His liver enzymes are also elevated. She doesn't know what it means yet.

Notgooglingnotgooglingnotgooglingnotgooglingnotgoogling

hippotree · October 2011

Oh, ash. I am sorry - that has to be so worrisome. I hope all tests come back normal and that he fattens up in no time.

sourapplemartini · October 2011

Oh Ash I'm so sorry you're going through this. Big hugs and I hope everything is OK with little Arlo.

weelass24 · October 2011

(((HUGS)))

Everything is going to be OK. You were tested of CF before right? Also, post this on the special needs board. They are familiar with FTT and have a bunch of girls who have dealt with it.

You are doing the right thing for him.

(((HUGS)))

staycee · October 2011

I'm hoping it's nothing serious. All my thoughts are with you and Arlo. Big HUGS to you!

TheOriginalSP · October 2011

I am so sorry honey. I will continue to keep you all in my prayers. ((hugs))

Mysterious_wife · October 2011

I am sorry Ash. I will keep you guys in my thoughts.

ohashlet · October 2011

weelass24:
(((HUGS)))

Everything is going to be OK. You were tested of CF before right? Also, post this on the special needs board. They are familiar with FTT and have a bunch of girls who have dealt with it.

You are doing the right thing for him.

(((HUGS)))

I can't remember. Luckily I have access to my records online so I'm going to look when we get home.

DrBeepersWife · October 2011

I'm so sorry Ash, I know how scary it is to take a newborn to the ER to have tests run. I will pray it is nothing serious and that Arlo will be just fine.

kaydee_2008 · October 2011

I'm so sorry you guys are having to go through all this Ash.lots of love and hugs to you guys.

joanithegreat · October 2011

Big hugs for you.

CWinfree85 · October 2011

Big huge hugs. I'm sorry Ash. I hope everything comes back normal and you guys are all home and happy very soon.

andrew's wifey · October 2011

I'm sorry, Ash, I'll have you all in my thoughts.

ludicrous · October 2011

I'm so sorry, I know how much that stinks and how expensive that is. I hope you get some answers and good news soon.

caffinated_tulip · October 2011

::Hugs:: That sounds so terribly stressful and scary! I'm going to keep thinking and praying for good things for you guys.

BostonGayGal · October 2011

Hugs x1000. I will be thinking of you three, then thinking of you some more.

Mrs_Liberto · October 2011

Oh man, Ash, I'm sorry. Do they have a goal you need to reach for his weight by next week to avoid hospitalization? Four pounds in a week sounds crazy!

Sidenote: maybe there's a generic for Elecare?

I hope you guys can get some answers soon.

Betsystar · October 2011

So sorry that you're having to go through this. Big hugs to you & your family.

ohashlet · October 2011

Mrs_Liberto:
Oh man, Ash, I'm sorry. Do they have a goal you need to reach for his weight by next week to avoid hospitalization? Four pounds in a week sounds crazy!
Sidenote: maybe there's a generic for Elecare?
I hope you guys can get some answers soon.

Oh it's not 4lbs in a week. Probably 7oz? Apparently the AAP says 1oz per day at this age so I'd assume that's what they'd want.

And she said something about it probably showing up on the newborn screen but possibly not? I don't know.

Discordia1030 · October 2011

Oh hon I'm so so sorry its leading to this. You and your family are in my T&Ps and I'm sending HUGE hugs and lots of good vibes.

robinsokj · October 2011

Was he jaundiced as a newborn? I'm so sorry you're going through this

+diana82+ · October 2011

((())) I hope you get good news very soon.

ohashlet · October 2011

robinsokj:
Was he jaundiced as a newborn? I'm so sorry you're going through this

Yes, but it was gone by his 4 day appt.

Unwritten524 · October 2011

((hugs)) I hope they find and figure out whatever they are worried about soon. I am sorry.

Mysterious_wife · October 2011

Please do not google right now. I wish I could send you big hugs right now. Can you call someone to come sit with you guys? I am so sorry Ash.

ludicrous · October 2011

Did They tell you what that means? Does he look jaundiced?

+diana82+ · October 2011

ohashlet:
robinsokj:
Was he jaundiced as a newborn? I'm so sorry you're going through this
Yes, but it was gone by his 4 day appt.

I assume they rechecked his bilis then? What were his levels like? Ditto MW don't google.

ohashlet · October 2011

ludicrous:
Did They tell you what that means? Does he look jaundiced?

She said it's a piece of the puzzle and nothing is sure and she doesn't know yet. She seems anxious for the CF test.

He doesn't look jaundiced and she said so as well.

Elaine&Matt · October 2011

{{big hugs}} I hope you get some more puzzle pieces soon and the docs can figure this out.

mmkaye · October 2011

Hugs. I hope you get answers soon.

bensbabe · October 2011

Oh dear! I hope you get some answers soon. Huge hugs and continued T&Ps

ChefSarah22 · October 2011

Thinking of you and your family. ((hugs))

kelle017 · October 2011

Thoughts and prayers with you. I hope everything is okay and you get answers soon.

leslie13510 · October 2011

I'm so sorry hun. I hope they figure it out fast, and that it's an easy fix. Lots of e-hugs and T&P's headed your way. ::hugs::

krate24 · October 2011

I'm so sorry Ash. I've been thinking about you all day. I hope that they figure out what is up. Big hugs.

Alex17 · October 2011

Lots of love and hugs going out to you and your family. I'll be sending postitive thoughts. ((Hugs))

mandyallcorn · October 2011

I'm sorry! I've been through the FTT and CF testing and hospitalization threats etc with both of my kids. (They've also both been tested for multiple other things.)

I'm not sure if infants can use it but we were given DuoCal to increase calories. It might be cheaper for you and the company that makes it may have an assistance program.

roshybride · October 2011

I'm sorry Ash! You guys are definitely in our prayers. Don't google. I know the Failure to Thrive diagnosis is really hard (we had one with Ezra). Just try to hang in there until you know more information.

Dee1028 · October 2011

Keeping you and Arlo in my thoughts, Ash.

I hope you get some real answers very soon. I can't imagine what you are going through. Hang in there. Lean on each other, support each other and just love that little man. Right now with all of the uncertainty is when you just need love and support surrounding you. And you have it coming in spades from the great white north from me.

((((hugs))))