Tuesday, June 21, 2011

It's been a rough road but it seems to have calmed down!

I haven't kept this blog updated, and I feel bad for that. I hope that most of you have found me on facebook, because I am better at updating there. I have lost almost 50 followers over the last 4 months. :( Hopefuly I can earn them back!

So here's the recap. Emily had been retching and vomiting every morning for months. It started in January, and progressively got worse. She had been getting three bolus feeds of blenderized diet during the day, and 12 hours of g-tube feeds overnight through the pump. She started throwing up in the morning to the point that she was losing weight and becoming dehydrated. The GI said he thought it was seizure related.

In March it was so bad one day that I took her to the local ER, because I assumed it was out of control seizures. They loaded her with ativan and such and sent us home. The next day it was just as bad, so I drove to UCLA where we see neuro. We were admitted through the ER for an overnight VEEG. The vomiting and retching were unrelated to seizures. We were discharged after two days. We made it a week at home, and then had a GI appointment. I explained that it was NOT seizure related, and it was getting worse. The GI said (in his exact words) "She looks like shit. You need to be admitted right now". We were admitted to CHOC and began testing. An Upper GI showed a loose but intact fundoplication and no hernia. An endoscopy showed redness consistent with persistant vomiting but no abnormalities. Biopsies were normal. Her g-tube was changed to a gj-tube, and we tried feeding through the j port instead. A gj-tube goes in the stomach and then threads into the jejunum (intestine) to allow you to feed the patient and bypass the stomach. This made things much worse, she would scream in pain and vomit bile non-stop. She had a PICC line placed, and was sent home on TPN.

We were home for 3 days and then we had a pediatrician's follow-up appointment. She sent us straight to the ER. Emily was still retching non-stop, even on TPN, and had a UTI. They discharged us with meds.

Two days later Emily had her VNS (electric implant for epilepsy control) surgically placed at UCLA, she went home the same day. The next day we went to CHOC's ER for continued vomiting. This time she had an Upper GI done with small bowel follow-through, although it was done incorrectly so it didn't give them any information. They started worrying about pancreatitis or gallbladder problems. We did ultrasounds four times, a CT scan, and many xrays. She has sludge in her gallbladder but nothing more. During this stay she pulled her PICC line out and had to get a new one. We were inpatient for 8 days and discharged still on TPN.

Two days later we took her to the ER at UCLA because CHOC had said they didn't know what else to do with her, and she was still retching. She was diagnosed with another UTI and had another Upper GI done. She was discharged after 3 days.

Two days later (notice the 2 day at home pattern) we had to go back to UCLA to the Urgent Care, because she was throwing up the antibiotic they had prescribed for the UTI. She was then prescribed IV antibiotics which I did at home with the TPN.

The day after this ER trip, we went to the ER at CHOC because she was draining blood from her g-tube. They said it was to be expected when you retch as much as Emily has been. Her blood counts looked okay, so we were sent home.

Two days later (see!) we were back in the ER for screaming and retching. We were admitted to CHOC for almost 3 weeks. They ran more ultrasounds, xrays, etc. Durning this stay she finally had a Broviac placed. It came out two days later and was replaced. She was sent home again on TPN, and CHOC said they had no clue what to do with her. They kept saying she should go to UCLA and be considered for a small bowel transplant. But they couldn't tell me what was wrong with her, so how could they say this? It was a nightmare. At one point during this three week hospital stay we were told we should take her home on hospice. Ugh. The pain team was consulted and she got some relief. Thankfully we decided not to do hospice since, again, they had NO idea what was wrong with her.

We were home for almost a week and then took her to the ER with a fever. Anytime you get a fever over 101 with a broviac (central line) in place, it's an immediate ER trip for blood work. Luckily her labs were good, so they said it was a virus and safe to take her home. Two days later (damn this two day pattern!) they called back and said to return her immediately to the ER. Scared the crud out of me. Turns out she had a UTI and they needed to prescribe antibiotics. They couldn't just call them in to the pharmacy?

We made it almost three weeks at home, and then the retching got worse again. We went to a GI appointment and were told "Emily is a mystery. Somtimes we don't even try to figure her out anymore". That is not very reassuring! So we took her to the ER at UCLA because their GI and motility departments are award winning. She was admitted for 10 days. She was diagnosed yet again with a UTI. She had a gastric emptying study, electrogastrogram, and some test where they determine your caloric needs based on your O2/CO2.

During this last stay at UCLA, they managed to get her off of 6 meds CHOC had put her on. They started her on a couple of new meds. The biggest thing we did her was to compress her TPN to only 18 hours a day, instead of 24. In between, she now tolerates some blenderized diet again! Before we feed her, we give her something called "magic mouthwash" through her g-tube. It's a mixture of viscous lidocaine, benadryl, and mylanta. It numbs up her stomach enough that she tolerates some feeds.

She has finally gained some weight, she is 33 pounds! They would like her at 35. Remember she's almost 8 years old. She's teeny. :) She is finally into 5T clothing for once. We still don't know for sure what is going on, but we have narrowed it down a bit. We know her stomach works decently, it's all the small bowel and intestine that don't. What we will do about it depends on how she does over the next couple of months. The hope is that her GI tract will wake up a bit and she will be able to get off of TPN.

That is the long version. :) In the meantime, Jacob graduated from 5th grade and is now officially a middle schooler. Emily is a 3rd grader now. We are getting ready for Jacob's birthday party this Saturday, I cannot believe I have an 11 year old! I will post again soon, and hopefully be a regular updater again. :) Thanks for not giving up on us!


Becca said...

Omg, I can't believe everything that's happened to poor Emily!!! I'm so sorry she's been so sick. Please give her a big (gentle!) squeeze from me and Samantha.

You lost 40 followers?? I would never "unfollow" anyone...if they just stop posting, then they just stop posting. That stinks! Think it might be a Blogger glitch? I don't think I follow you on FB - what's your name there?

Anyway, glad to see the update! Hope you get some answers for your beautiful girl soon.

Junior said...

lots of hugs and prayers, you guys have been through so much over the past months.

Shannon said...

I follow along on FaceBook and you guys are frequently in my prayers but there is nothing like actually seeing it all typed out in one place! MAN! poor Emily, your poor family!!

I am glad she's gaining and am looking forward to things getting better rom here!

Alison said...

What a rollercoaster! I'm so glad to hear Emily is doing a little better. How do I find you on facebook???

Debbie said...

Wow!!! That is waaaay too much for anyone to endure,
Glad to hear things are calming down....praying it stays that way now.
Emily needs to have some GOOD months now!

Our Family said...

good to hear from you and i don't blame you for not blogging. thank you for checking in. i hope your sweet girl gets some rest.

Brad and Amy said...

I have been looking out for this post! I was wondering what happened to you and feared the worst. So glad to hear that things are headed in the right direction.

Cathy said...

My nurse uses tegaderm. The totally clear one with no cloth around the edges. I will talk with her since I didn't watch her. I will do step by step pictures and send to you. Have you been getting my messages on blog when you have made post. I am having so much trouble commenting on some blogs.

Zoey's mom said...

Well,seeing I stalk you on FB,all of this i knew.Not happy about it one bit and praying and hoping that home is where you stay... for good.

Sorry we didn't make it down.Don't know if you saw,Zoey had MRSA,in her eye,nonetheless,doubted you wanted us around.Anyway,would much rather meet up outside that place,wouldn't you?Lets make some plans,okay?

Love to Miss Emily.

Cathy said...

I keep coming by to see her new do! I think she looks precious. I showed her to my nurse today and she said "that is one beautiful little girl." to which I replied she sure is!

Eric said...

Followers? The only followers worth having are the ones who stayed for the right reasons.
I was so sorry to see the difficulties you have endured, I know them only too well from my son Segev. Heart wrenching, gut wrenching (no pun intended) come to mind.
I am still amazed that they placed the VNS during this maelstrom.
When they did biopsies did they also do one of the SI for celiac sprue? Stomach PH was OK? Did she have much mucous or vomit mucous much?
My boy vomited non-stop from Jan. 10 until the end of may until I started giving him mucous thinners twice a day.
I sincerely hope you are back on your feet after this horrible time and that Emily is returning to her norm.

armouris said...

more info on pancreatitis here - Pancreas and Pancreatitis

The VW's said...

WOW! Sounds like Momma deserves a vacation! Hope you get some down time soon! Thinking of you and your sweet Emily, and praying that she is able to stay home for a LONG time and remain pain-free! Love and Hugs!!!

LauraLew said...

Thank you so much for the update. Since I am apparently the last human on earth who does not do facebook, I have been checking your blog constantly. I think about you guys so much and am so glad things have settled down a teensy bit.

HennHouse said...

What a nightmare! I hope things start to calm down for you all. Praying.

Julie Shaw said...

wow that scary!


Dear God. I am so glad you are back. what a journey...

nancy said...

I was convinced it was pancreatitis as the experience sounded so familiar to what we went through with my daughter. Still check on you every few days and will continue that and my prayers as well.