Brian and I have been pretty active on Twitter and Facebook from our little trip to the ER yesterday that seems to be seeping into today. But sometimes, 140 characters just isn’t enough… so here’s a more wordy update.
First… THANK YOU for all your prayers. We were humbly surprised and SO blessed when we saw all the replies, comments, direct messages, texts and emails. You have no clue how much we that really carried us through. Thank you!
So… let’s start at the beginning:
Paxton has always had G.I. issues. I wrote about his newfound allergies HERE. With that said, though it’s not “normal” to see blood in stool, it was somewhat “normal” for us to see it in Paxton’s. That’s why they wanted to go in with a Flex Sig a few months ago.
The health of the human race relies so much on our G.I. health. Paxton’s G.I. tract is compromised by who knows what, he actually gets sick a lot easier than most kids. Chance may get a little cold from school that lasts him 4 days… but Paxton will spike a fever and hold that cold for 2 weeks. Sometimes, that cold will transform into Croup or other viruses that just make my poor little man miserable.
Well, 10 days ago, Paxton’s began showing even more irregular issues with his bowel movements. He had diarrhea and a LOT of blood in his stool. And when I say “a LOT”, I mean it was way beyond little clots or faint trails of red. My sister, Helen, was here and I actually screamed out for her help when I saw it. We called into the pediatricians office. No fever. No change in Paxton’s appearance or mood. It was later in the evening time. So, though the amount of blood was alarming, the on-call doctor said it was okay to post-pone and see him the next day.
The next day, they did some tests and found nothing conclusive. Said they thought it was a virus and he’d be over it in a few days.
Fast forward to Friday night a week later (few days ago). Paxton was still having loose stools… but that night, a fever was added to the equation. It was about 100* so it wasn’t anything to freak out over. Babies teeth and get warm… and he still seemed pretty happy. I called into the advice nurse anyway. Pax was taking in liquids so she told me to treat him with babies tylenol and motrin if he got uncomfortable or if the temp went up more.
Saturday: Pax’s fever rose to 102*. We treated him at home. He took in Pedialyte and water like a champ so we thought he’d be fine the next day. However… Pax never got comfortable and he ended up not really sleeping all day OR all night.
Sunday: Pax was still pretty toasty, so Brian stayed home with him while the rest of us went to church. We all met up for lunch after church… but Paxton didn’t seem happy at all. In fact, he seemed miserable. Nothing would soothe him. He wouldn’t take food. He wouldn’t take drinks. He cried or whimpered the whole time, which if you know him at all is VERY strange. He was super hot to the kiss (my guess was 103*-ish) and he would freak out every time we touched his tummy. I told Brian… “I think it’s time to go to the ER.” So, we did.
At OHSU Doernbecher’s (they have an ER JUST for kids), they marked his temp at 104* plus. His poor little brain was cookin’. They immediately gave him meds to lower his fever. Then they did just about everything under the sun to him (in this order):
- catheter
- rectal thermometer
- followed up a stool culture sample (while you’re up there, right?)
- IV plug
- blood draws (3 vials full)
- IV drip of 500 ml of liquids
- x-ray of his mid-section
- ultrasound (after all THOSE tests came back “normal”)
We checked in at around 2pm and left there at 10pm.
Good news: we know what this sickness is NOT caused by.
Bad news: no one knows WHAT’S wrong.
They sent us home after they had an extensive talk with Paxton’s pediatrician AND G.I. doctor. We had to go in again today for a follow-up.
Follow-up was inconclusive. Surprised? I’m not. However… ALL doctors involved (ER Pediatrician, GI Specialist, Pediatrician AND Naturopath) all believe it’s time to do the Flex Sig. This sucks because we have a ridiculously HIGH deductible and though this will most likely benefit Paxton… it will take forever to pay it off. Our ends don’t meet now… so this only stresses me out more. However… knowing that we’ll me a step closer to knowing how to treat Paxton makes it all worth it.
Anyway… that’s the update for now. Our next step is to schedule the Flex Sig… and mountains of paperwork.
Thank you for your prayers… and if it’s not too much to ask, please keep praying.
Jenni, how can I help financially? I can only give a little but I’d like to help.
wow! thanks! i want to turn you down… but the reality is we can take every penny given to us right now for this.
We will definitely keep praying – for healing, for financial help, for peace.
Thank you for the update and hope you’re all getting some rest now.
still looking for that rest… but thank you!
I have been praying since I saw your tweets yesterday and will continue to lift all of you up. Praying for finances, peace, and healing.
Our God is a God of Miracles.
And on a different note…. Seriously even sick that Pax is the cutest thing I have ever seen. What a sweet boy you have.
i’d have to agree with you. pax is cute no matter what. he’s such a trooper.
This sucks, I feel for the little guy.
I hope they figure out what is wrong with him very very soon.
I remember a few years back my sister had a lot of problems with her stomach and pain. They could not figure out what was wrong. All kinds of test and even took out her Gallbladder and still nothing. it is tough because you want to find out what is wrong but when the doctors do not know it makes it frustrating.
I hope he feels better soon and gets back to playing with that red ball he has in his picture. He looks a lot happier there then in his hospital pics.
yes. we’re pretty frustrated… but we’re also resting in knowing that God knows all things. it’s not always about the outcome as much as it is about the journey… and we’re taking every minute we can with Pax.
i woke up this morn with Pax on my heart and prayed that his sweet lil self was on the mend… thanks for the update, i know this must be nerve-wrecking for y’all… i’ll keep praying. ((hugs to your sweet munchkin!))
you’re awesome. thank you so much for your prayers. i’m humbled by the outpour of love here.
I will definitely keep praying for you guys as well as for wisdom for the doctors. Trusting that answers will come soon.
hoping and trusting with you!
poor baby =(
i will keep on praying for you and your family.
for healing. provision. strength. grace.
keep us updated.
thanks, patricia! i will.
Praying for clarity of diagnosis, resolution and healing.
i know you really are too, melinda!!!
Hi, love. Still praying… there is nothing more frustrating than now knowing. I hate the financials for you, but if the Flex gets him closer to answers it will be worth it. Maybe a combination of the natural remedies for his allergies and the help of medical intervention will give the results he needs. Heaven knows that sweet little boy is worth it.
Love you guys.
i guess we’re just gonna hang on till after the flex sig. and you’re right… he’s worth every penny and more.
Praying for all of you – healing, wisdom, and rest.
Scary stuff. Lifting all you guys up. Especially little Pax. Love you
Praying for Pax’s healing as well…
Tough stuff. I can’t imagine how difficult it is to see your baby not feeling well. However, I’m so thankful for the support you have both through this online community and within arm’s reach. Praying for you sweet sister.
i’m so thankful for this online community as well. you have NO idea!
we are blessed!
OH NO! Poor baby Pax.
Ugh.. stupid family deductible.. ours is 6K… umm.. did I even make that last year? Maybe in the form of UNEMPLOYMENT!!
Ah geez.. it will all be ok. As overwhelming, as I am sure it all is, just a day at a time.. a payment at a time I guess right? God will provide.. in many little ways.. and I bet it will all add up in the end ya?
Love ya!
thanks, sis!
our deductible is $7,500. good news is that once we do this surgery, we’re gonna push forward aggressively to find answers with everything else for the rest of the year since we’ve already paid the max, right?
my two biggest fears:
(1) it’s something big like cancer
(2) they don’t find ANYTHING and we’re back to square one.
BAH!!!
It’s amazing how resilient kids are! And parents, too, when it comes to their kids being sick. Be aggressive. Be thoughtful. Ask questions-esp the hard & scary ones.
These past 3 weeks have really run together for me, but I never felt alone. Not once. The community of tweeple & friends were, not only amazing, but never-ending. I thank God for bringing the world so close when someone is in pain.
Praying for rest & strength for all of you. And for the doctors’ knowledge base. That they will find the cause & the remedy.
Dang….
I have MISSED YOU with my FB-free Lent so I came here to catch up. Those pictures break my heart and that list of tests they did…. ugh. Reminds me of when Mr. O was in the hospital for an allergic reaction and he had all those same things done to him. It’s heartbreaking to be the one to hold him during all the poking and proding, but you’d also not have it any other way. My mommy heart is heavy for you. Whenever it comes to our babies, the world feels like it stops. I can’t offer money (we’re in the broke as a joke boat too…blah) but I can offer love and prayers. And know that if I were there, I’d be on your doorstep with a casserole or food of some sort.
HA! Food, it’s what I do. 
Miss you lots, and been thinking about you a lot lately oddly enough. Missin’ my FB connections!
glad you’re back, and welcome back!
i’m sorry i’m just now reading this, jenni. and dang, lil pax is a trooper.
praying still.
I hope your Pax is on the mend. I’ve suffered from mystery gastric ailments for the last few years, so I can empathize a bit with what he’s going through. I will pray for him—an easy thing to remember since he shares a name with my oldest nephew—and you.