Tuesday, February 26, 2013

The Deed is Done - The NG tube is finally in place.

Pumpkin went to the hospital at 8:30 this morning and was put under around 10 am for less than 30 minutes so the nurse could insert her NG tube.  DH said that everyone was really good with her, and they even offered to medicate her and teach her to insert the NG tube herself with meds for gag reflex control, pain management and relaxation meds, but she wasn't interested at all after last time.

The nurse said she understood why it would have been difficult for her to do the first time as she had to turn the thing around quite a bit to get it down.

Jaedyn after 3-4 days of diarrhea and belly aches, Jaedyn has had not tummy complaints, one soft stool and no diarrhea!  We're off to a great start!  Now if she will only get used to the tube being in her nose...

She is feeling pretty sore in the nose and throat right now.  They say it takes about 3 days to get used to it before you don't notice it any longer.  She is sleeping in the recliner tonight so that she can keep her body at a 30 degree incline, per a site we read on the internet...  I hope she has a good night.  Tomorrow we can get her a wedge pillow so she can sleep in her own bed tomorrow night if she would like.

Her older sister had a rough day worrying about her all day and ended up in tears once at school.  Tonight she pulled out her diary to try to get it out of her system before she went to sleep.

Monday, February 25, 2013

Going back to hospital in the morning...

Tomorrow at 10 am, Tim and Jaedyn will be going back to the hospital for NG tube placement.  The anesthesiologist will kindly put Jaedyn under long enough for one of the nurses to place the NG tube, then bring her back.  She's still having trouble getting much Ensure in - only 5 cans yesterday, and probably less than that today.  I'll be glad when our peds GI doc is back from her vacation, but I don't know that we'd be doing anything differently.

Sunday, February 24, 2013

Update... Ensure failing

Pumpkin had a check in on Tuesday.  She had been experiencing a lot of diarrhea, but that seemed to resolve on Wednesday.  Tuesday she had gained another pound.  Starting 3 days ago, she started having issues with the Ensure again.  It makes her tummy hurt when she drinks it and she isn't able to get the full 7 cans down.  Twice in the past 2 days she has mentioned wanting the NG tube so that she can get another kind of formula that will be easier on her tummy.  All the better formulas taste terrible.  She tried one and said it tasted like vomit...well that makes sense, since it is predigested...  I guess I'll be talking to the pediatrician tomorrow about our options.  :(

Tuesday, February 12, 2013

First checkup on EEN

Pumpkin had a rough night and had difficulty getting to sleep. She is a little depressed and tired. School isn't getting done adequately and we had a talk about this last night and this morning, which I think upset her. Today we woke her up and brought her to the doctor for her first week checkup. She has gained 1 lb 6 oz. That is even with 2 of the days being less than 7 cans.

We are getting the nutritionist involved more with adjusting her caloric needs and fluid needs. She is having more stools, and they are not formed. Yesterday she had more GI upset and more frequent stools, but not really pain.

It is so hard seeing her down, and I know it is my hypervigilance, but I can't help being pulled down with her. I've sent her home with her daddy with the recommendation to get the diffuser going with her favorite oils to perk her up while she is doing school. I hope it helps.

Monday, February 11, 2013

The effect of Crohn's disease on me

I know this blog isn't about me, but Pumpkin's disease does affect me. 

I think I've become obsessive with her health.  How many cans of formula did she drink today? How does she feel?  Is she having diarrhea?  Are her stomach aches from her formula or from her Crohn's?  Is she on the right formula?  Should we be starting another med to keep her in remission?  Are we doing enough?  Are we doing too much?  Is this going to help?  Is this going to hurt?  Is she gaining wait?  Is she getting enough calories?  Is this Crohn's new or is it old for her?  If it is new, why has she had trouble eating her whole life?  If it is old, why didn't it show up on her biopsies?  Why were the endoscopies and biopsies clear and why the video endoscopy show inflammation and ulcerations throughout the colon 9 days later?

I wake up frequently at 4-5 am worrying.  Trying to figure it all out.  I can't read my Torah portion (Bible study) or even read a book without falling asleep.  I'm tired at work and have a hard time thinking about other stuff.

Pumpkin's homeschooling is frustrating me.  DH is not keeping track of her.  She is not doing all her work.  Last week she did one out of 8 assignments in history and literature.  Yes, granted she was in the hospital 1.5 days, but still she had 3 days at home.  Aargh!  I don't want to send her back to school.

Saturday, February 9, 2013

Pumpkin's First Treatment Begins

This week Pumpkin started her first treatment.  As you know from my last post we decided to go with a nutritional pathway rather than meds.  This made sense for us since she is so underweight and because of a low side effect profile. 

Once I accepted that she has Crohn's, I also had to come to the understanding that this isn't something that I can control or fix.  We've been trying to get her healthy on our own for 13 years.  Yes, we've made her better, but we've never fixed her and she doesn't get well.  She still can't eat much and she gets full quickly.

So Tuesday we brought her to the hospital to get a naso-gastric tube put in.  This would allow her to do a treatment called EEN (exclusive enteric nutrition) in which she gets fed a special formula exclusively for 8 weeks (no other foods) with water.  Studies have found up to 80% of kids who do this treatment go into remission, but then have to either continue it part-time (one month of every four exclusively, or 5 nights a week) or go on long-term meds to keep it in remission. 

Our experience at the hospital was not what we were expecting.  We were planning that she'd get the NG tube put in easily (and be taught how to do it herself so she can take it in and out at her convenience), then would be monitored as they increase her formula intake for a condition called "refeeding syndrome".  Instead, the first time they attempted to put an NG tube in her, it was too big.  They somehow scratched up the inside of her nasal passageways and she was traumatized.  They had to locate a smaller NG tube and have it flown down 6 hours later from Anchorage.  She decided that she would do the placement herself with coaching after that, but both other attempts by herself with the softer, smaller (6 french) tube was too painful.  She finally flat refused to try again, even when we tried to sedate her to do it.  She decided it wasn't for her, and that she would drink the stuff instead.

We came home Wednesday morning, brought back to the medical supply store all the equipment we had prepared to use to pump it into her, and started the formula.  On Wednesday she drank 5 cans.  On Thursday she drank 6 cans, and yesterday she drank 7.  That will be her maintenance amount for now.  She continues with 7 cans a day.  She still doesn't have much appetite, and doesn't seem to be too bothered when food is cooking in the house or people are eating around her.  She still feels a little sick when she drinks the formula. 

On Wednesday she had a small poo, but then didn't poo again until yesterday when her tummy was hurting and she had some painful diarrhea.  I'm not sure what that means but the pain was relieved when it was over.  She hadn't had diarrhea for a couple of months, so it is concerning.  I hope it was just her body getting used to not having regular food.

I've found a good forum of parents of other kids with inflammatory bowel disease, and it really helps to be able to talk to other parents who have been there and done that with their kids.  They've helped me come to accept this diagnosis and I think will be there for me as we walk this journey wherever it leads us.

Pumpkins story before gastroenterology came to play

Our little Pumpkin was born the second and smallest of our (eventual) brood of 4 chickadees.  She was 8 lbs 6 oz and 22 1/2 inches long.  She was born with dark hair, but each time we washed it some of the darkness went out of it until she had a beautiful bright auburn hair.  It has since lightened up to a strawberry blonde, but will always be red to me.

Pumpkin had an issue with spitting up since birth.  She'd drink my white breast milk and it would come back up - orange.  She soon dropped down on the growth chart a bit to the 50th percentile for height and 25th percentile for weight.  Around the age of 1 she contracted the Rotavirus.  This gave her the worst diarrhea that our pediatrician at the time had ever seen.  She'd drink purple pedialyte that came out the other end so fast that it was still purple.  She was in the hospital for 5 days with an IV stuck in her little foot and went through 40 diapers in a day.  Her little fair bottom looked like hamburger meat from the soreness of the diarrhea.

I can't remember at what age she started having chronic diarrhea, maybe it was after the rotavirus.  Around 2 years of age she was diagnosed as failure to thrive because her weight had dropped to the 5th percentile and her height to the 25th percentile.  She had a big workup with lots of labs, a sweat test, saw a pediatric gastroenterologist, a pediatric urologist (for labial adhesions), and a pediatric endocrinologist.  In the end they diagnosed her as just being a small child with big parents.  They essentially told us nothing was wrong with her - that we needed to find a way to get more calories in her working with a nutritionist.  We tried that and tried all sorts of things.  She just stayed there on her low end of the scale (5th %) for weight and at the 25th percentile for height, hardly able to eat, frequent stomach aches, regular bouts of diarrhea, etc.

At the age of 4 Pumpkin started having seizures about a month after her 4 year old shots.  They were diagnosed as temporal lobe seizures and she was put on medications for this.  She took medicine called Trileptal for 1.5 years and the seizures seemed to be gone, so they weaned her off of it.  When she was 6 we went to Guatemala for 3 months.  She started feeling funny feelings in her arms that reminded her of how she felt with her seizures, and so back on the medicine she went. 

Before we went to Guatemala we had found a diet called the Feingold diet that helped with her seizures, hyperactivity and behavior issues (she wasn't ADHD, she was just challenging).  Cutting out the artificial colors, flavors and preservatives in her food really helped.  Reading the information that came with the Feingold diet we read about symptoms of gluten intolerance.  We decided to all go gluten free to see what would happen.  We found that eating gluten free helped with her chronic diarrhea (and mine too, hmm) as well as her belly pains.  We thought we'd found the problem.  Apparently we'd only solved one of the symptoms of her problem. 

As she continued on the seizure meds she got more and more malnourished.  We tried another med because she had started getting bad side effects from the meds.  She got stomach pains, heartburn, depression, suicidal ideation, weight loss, anorexia, weakness, inability to focus...  The new med was not better.  She was so bad at one point she couldn't hold a pencil without fisting it.  We decided the seizures were better than the meds.  We stopped the meds and tried to fatten her up, unsuccessfully.  She still had little appetite, textures were a big problem, but she didn't have any more seizures... until we were in the middle of our move to Alaska two years ago.  They found another kind of medication that she seemed to tolerate better - at least she wasn't wanting to kill herself or crying all the time.  This one had the unfortunate side effect of heartburn and GI upset though.

Last spring I took a look at her growth chart.  She was down to the < 1% for weight and 0% for BMI.  Her height was okay in the 25%, but you have to realize that both of her parents are 6 feet tall and all her siblings are tall people, and her grandfather was 7 feet tall.  25% isn't her expected height range.  She hadn't any female pubertal characteristics.  I took her to a pediatric endocrinologist who came to our office quarterly.  She measured her bone growth and at just shy of 14 years her bones were measuring that of a ten year old.  She felt this might be why she was pubertally delayed.  All her labs showed she didn't have any endocrine issues.  She wanted to see her again in October to see how she was doing.  In October I mentioned my concern about her lack of appetite.  I thought maybe her stomach was congenitally small because she couldn't eat much and she got full so easily.  I also mentioned she was having some joint pains.  This led to the referral to more blood work and found that her sed rate was elevated to 51 (<20 normal, I think) and her CRP was 2.9 (<1.0 normal).  This got us referred to rheumatology (which we still have yet to get an appointment) and gastroenterology.

The rest of the story you can read from the beginning of this blog.