The Chronicles of Ellie Bellie Bear

Wednesday, October 5, 2016

Interventional Radiology Update

If you are new here, you might want to read this blog post first so that it all makes sense.

Radiology wasn't doing such a great job at calling me back so I took it upon myself to call GI. Of course, I wasn't sure that GI could do anything since Ellie's case was no longer under their jurisdiction. I didn't contact the nurse of Dr. S, the ordering physician, but rather called our primary GI's nurse, K. Out of all the specialists we see, K from GI is the only one who ever calls back in a timely manner and she knows her stuff. If anyone could light a fire under radiology's patoocus, it would be K. Everyone needs a K in their corner.

"hi everyone!"

K called me not even two hours after I left a message. She spoke to radiology who informed her that they were doing a massive schedule rehaul. Translation: moving around already scheduled patients so that all their surgery dates will be pushed back, which means they are booking ever farther out. Anyway, my point is that radiology stated that she would call me the next day and she did.

She just had to take her Nutella sandwich to the bus stop.

Two Friday's ago, I spent 20 minutes on the phone with the Interventional Radiologist's [IR] nurse, C. In the middle of HEB. Our local grocery store. In the dairy department to be exact. It should be noted that I forgot to pick up half the items on the list after speaking with her. Like the ingredients for what I planned to make for dinner that night. We ended up eating out. Back to the topic at hand, C spent a great deal of time explaining to me how this is all going to go down. I am not amused.

Someone was very excited to go back to dance class.

First, Ellie will come into the hospital on a Thursday for a contrast enema. This is supposed to clear her out (yeah right) and allow them to see the exact location of her cecum, the upper part of the large intestine. Now, I am not real clear on this, but her colon is supposed to be in a certain state for the procedure. Fully cleaned out? Partially empty with stool of a certain consistency? I don't know, but let's for full clean out because I know we can accomplish that. I carefully explained that my child's colon is uncooperative and will probably need a 23 hour hospital stay involving GoLytely through an NG tube. Apparently, I have to contact Dr. S in GI, our secondary GI doc, to "discuss". It's like musical specialist phone calls over here.

From Friday - Sunday, Ellie can only have clear liquids. No solids. No food. For 3 days! How am I to explain to a child who is developmentally 3-4 year-old that she needs to starve for an upcoming procedure?!?!? They are nuts! Seriously, unrealistically nuts. It is like child food torture. Andrew and I have a big plan - remove all food from the house. Every. single. last. morsel. All 3 of us will survive off juice and water and jello, but us parents will get take out after Ellie's in bed. Seriously, whose brilliant idea was this?! Why not do the clean out from Saturday - Sunday before surgery???

Yes, she took these medical glove balloons to school. No, they did not return home.

Monday, Ellie will be admitted to the hospital where she will have an abdominal X-ray to inspect the state of her colon. If everything looks good, she will go over to IR and have her cecostomy with a temporary device (button/tube) placed. Again, I am not sure if she needs to be fully cleaned out of not because nurse C said that if she is too liquidy, the surgery would be moved to Tuesday. If on Tuesday she is still liquidity, the procedure will be canceled. Let's all cross our fingers, pray, send positive vibes, and happy thoughts that this does not happen. Repeat after me: "Ellie's colon needs to be in a awesome state" or mom will throw a huge conniption fit in the hallways of the children's hospital and will be escorted out by security for her ranting and raving.

Photo: www.nationwisechildrens.org

After the procedure in IR, she will remain in the hospital for a week. If she does well, she could be released on Wednesday or Thursday. Take a wild guess as to what I am hoping for. How will I keep this hyperactive child occupied for an entire week. An entire week spent in one room. I'll be climbing the walls with Ellie and start talking to myself. Oh wait, I already talk to myself.

Now onto scheduling. Because the procedure is on a Monday, we need a Monday opening in the schedule. It also needs to be on a week where the doctor is around for the entire week. This really limits when we will get scheduled. As it stands, we are booked for December 5th. Now for the kicker. There was a surgical date available for 11/7. Yes, the beginning of November. I was thrilled until I learned that you need to have a consult before the surgery. The earliest consult date was for 11/8. The freaking day after the surgery. ARE YOU KIDDING ME?!?!? It would be nice if the radiologist would, oh I don't know, work her into the consulting schedule. You know maybe do a 30 minute over book or something. The nurse is going to talk to the radiologist, but she warned me that it is highly unlikely. That was over a week ago. I put a call in to touch base and as usual, I am still waiting.

I am frustrated, but doing okay. I am peeved that she will now have the procedure 6-7 months after she was first referred for a cecostomy. I was angry on 9/12 when she was supposed to be in the OR. Yet, I can't do much other than complain and moan about the unfairness of it. I can't make a surgery date magically open up. So now we wait and continue to poorly manage Ellie's constipation the way we have been these past several months. She has been dealing with the constipation for nearly 3 years and yes, it has gotten progressively worse, but we can make it another couple of months. I am paranoid and anxious that her colon will not be in the right "state" that Monday or Tuesday and it will be canceled - having to start all over again. I am trying to get into a sense of calm. To stop freaking out and thinking about the cecostomy nearly every waking moment. I need to get a handle on it because I've got another 3-4 months to survive.

In the meantime, I am off to go constitute a special enema in my kitchen in hopes of "uncorking" Ellie's gut.

Sunday, September 18, 2016

The birthday girl! Happy 7th Birthday, Ellie Bear

I wrote this post last week, but blogger decided to delete the 2 posts that I wrote. Anyway, last weekend we celebrated Ellie Bear's 7th birthday a little early. Her birthday was actually this past Friday, but we originally thought that she would be in the hospital after the surgery that has been canceled.

Ellie is fixated on school buses and it is actually one of the only words that she can say clearly so we opted to go with a school bus theme birthday party. We kept the party small - just a few close family friends. I went a little crazy with clipart and picmonkey.com when it came to invitations and "thank you".

I had the brilliant idea of decorating stop signs with markers and glitter glue. A big mistake. I ended up covered in glitter glue after Ellie decided to use her teeth to remove the cap. Girlfriend sent the glitter shooting across the room. Of course, The Bear was covered head to toe in sparkles. Still, she had fun and that is what counts.

One of our family friends showed up with two Mickey and Minnie Mouse balloons. You would think they hung the stars. Ellie dance around while humming to herself.

Now the cake was a big hit. Target has delicious cakes with really tasty icing. My little chocolate monster was thrilled to have chocolate cake with chocolate icing. I got the school bus off Amazon and Ellie was very pleased. She couldn't believe that it was finally her "happy birthday".

Of course, Ellie stole the cake server and used it as her own personal spoon.

For the party favors, I make school buses using Hershey nuggets. You can get a free printable from the blog like a pretty petunia.

(Thank you tags using clipart and picmonkey.com)

Overall, it seemed that everyone had a great and Ellie was exhausted after wards. So were Andrew and me.

Sunday, September 4, 2016

A quick update on Urology/GI procedure plan

When I last left off, I mentioned that both urologists confirmed that they could perform Ellie's cecostomy and tube placement for Monday Sept. 12, but they wanted to discuss the surgical approach. Well. . . I was confused because at our long awaited urology pre-op appointment, we decided on a laparoscopic approach with the possibility of needing to open her abdomen up completely.

Of course, the other surgeon was out of town so they couldn't not discuss immediately. I gave 2 weeks and left a message this past Monday with the nurse. Tuesday, I get a phone call from Ellie's secondary GI specialist, the one who performed the colon manometry back in June. He tells me that the procedure will be done in interventional radiology [IR] where they just "pop" the button right in. It is less invasive and the hospital stay is closer to 48 hour as opposed to 4 days. Obviously, this is all good, except, at our urology appointment in July, GI relayed to urology to not do it through IR because her colon may be too floppy from being stretched out. What?! So do they bring her into IR and if it doesn't work we need to relocated to the OR?

Friday approached and as usual, I never heard back from the urology nurse. Dr. McQ, the actual urologist calls me personally. Her surgery on 9/12 was CANCELLED back on Tuesday since her procedure will be performed in interventional radiology and not the OR. She assumed that I knew this already. Urology is no longer in charge. GI put in the orders. Radiology is taking over. If GI was going to put in the orders, why didn't he do so in June?! I immediately called GI and then googled the number for radiology. Radiology never calls back, but GI does. . . only it is the other GI's nurse. According to her, IR is booking into late November, early December. I may have lost it. I spent the afternoon angry crying.

first day of 1st grade

Timeline:

June 16th - referred to pediatric surgery by GI, then Dr. C in urology
Dr. C out of town, then takes another week to look at her case
Referred to Dr. McQ in urology and she is out of town
July 24th - urology appointment, tentative surgery date because need to coordinate with Dr. S
Dr. S it out of town so more waiting to coordinate
Both urologist can do the 12th, but need to discuss approach, Dr. S out of town
August 30th - GI calls to change plan
Sept. 2nd - surgery cancelled
No new date yet.

She lost her front tooth!

This is ridiculous! If she gets booked in December that is SIX months since the ordinal order was put in. SIX MONTHS. My daughter is in pain. PAIN. She is uncomfortable and only goes with a special enema that I have to constitute myself. We can only give those enemas twice a week which is not enough to help her. Her medications do nothing. She spikes fevers because of this. She had to have a urinary catheterization due to being unable to pee and screaming secondary to constipation. This is unacceptable. I will be rattling radiology's cage. I will cry and beg for my daughter, but it isn't like I can personally create an opening in IR. I will contact a patient advocate in hopes of filing a complaint. Other than that, all I can do is scream and watch Ellie suffer for another 2.5 to 3 months while they all had their thumbs stuck up their *sses. It seems they all forgot that a real human child is involved.

Wednesday, August 17, 2016

Entourage, Little Thief, Oxygen, Urology

Hide the silverware! My daughter is a thief. She steals. She is sly and crafty. Ellie is obsessed with magnets. Seriously, not metal object is safe around her. She carries around her magnetic toys. We were recently at a restaurant and when we returned home, she whipped out a fork from her backpack. This was not a fork from our house. No, girlfriend stole it from the eatery. My goal is to nonchalantly return this eating implement to the restaurant. In the meantime, I will be searching her backpack before we leave any establishment.

I have been negligent on taking pictures and posting Ellie's entourage on Facebook. That is not to say she isn't packing everything, but the kitchen since in her backpack. Far from it. She is MacGyver. A boy scout of the "always be prepared" sort. Some of the more entertaining items (aside from the fork):

Necklaces
Oven mit
Plug to the bathtub
Receipts (tons of receipts)
Napkins
Cups
Medical gloves
Sticks
Rock
Play dustpan
Safety googles
Spare shoes
Straws
Measuring spoons

Apparently, Ellie thinks she is going to be doing some cooking.

Andrew and I have been going on date nights lately! We have this awesome respite care provider, but she left for college this week. Arms crossed and foot stomp at this development. Anyway, we have been trying out different restaurants and recently went swimming at Barton Springs. It was so cold I couldn't even catch my breathe. Of course, Andrew spent the evening telling me that the water felt great.

I would love to have a blog post without medical updates, but unfortunately, it will not be this post.

Today we had an appointment with Chest and Sleep Clinic. A while back, we learned that Ellie had obstructive sleep apnea. We did a lingual tonsillectomy and glossectomy (tongue surgery). With a repeat sleep study, we learned that the surgery did indeed help alleviate some of the obstruction. Unfortunately, she seemed to have developed central sleep apnea (basically the brain forgets to tell you to breath). A brain MRI revealed no organic cause for central apnea. Because she refuses (actually is quite combative) the CPAP, we are now starting her on oxygen at night. Fingers crossed she tolerates it. I plan on putting on the nasal canula after she is asleep.

I made Belly Bands to cover up Ellie's C-tube so that she doesn't play with or pull at it.

Ellie's cecostomy surgery date is still tentatively for Sept. 12th. Yes, it is still kind of sort of up in the air. I am not happy. I like things set in stone. We have two urologists in the OR. Both agreed that they were free for OR time on 9/12. However, they are still deciding on how they are going to approach this surgery. They may need a radiologist in the OR. If that is the case, they may not be able to coordinate all 3 people which may mean a different surgery date. Of course, the one urologist it out of town. Seriously, they are always out of freaking town. She needs this surgery sooner rather than later. Last week, Ellie had to be catheterized at the pediatrician due to a UTI and urinary retention. Constipation can lead to urinary retention. Ellie was doing so well until she well, wasn't. She was crying and signing potty, but could not go. Fortunately, the catheterization fixed the problem. I do not want her to go through all of that again.

Hopefully, the next time I blog, I will have more exciting news to report. No wait, boring. I would love for life to be boring!

Friday, July 29, 2016

July Update: The Fun Stuff and The Medical Stuff

Believe it or not, there is not much to report. July has been relatively tame with the usual therapies, fun summer activities, and only 2 doctor's appointments.

The Fun Stuff:

At the very end of June and into July, my mom (Baba to Ellie) visited from St. Louis. We had a full schedule trying to fit in everything we wanted to do. With each visit, we make sure to get breakfast with awesome coffee and head to the mall to ride the train. It is tradition, you know! We went to a 4th of July BBQ at my friend's house - the friend I have known since I was 8 years-old, the one who introduced me to my husband. We had a great time and Ellie was very well behaved. You all know what a feat that is.

Ellie and Baba

Ellie is still trying to hard to talk. She is saying new words such as arms, kick, and fast (sounds like *ss). Girlfriend certainly has her curse words down. Her speech therapist had me write down 10 of her most favorite foods so that she can work on these words specifically. At the very top of the list is "cake". Right now, she signs it incessantly while making the "k" sound only.

4th of July BBQ

At the beginning of July, Ellie participated in a dance camp for the children who are a part of the 2dance2dream program. The Bear had a great time and I had 2 hours for 3 days to myself. It was wonderful. I did grocery shopping and ran a few errands.

Enjoying dance camp

Last year, we started swim lessons with this woman who works solely with kids who have special needs and their siblings. Ellie made great progress last year and I worried that she would have lost all her skills during the school year. Not so, she remembered! As a child who is petrified of water (aside from baths and a splash pad), she is doing great. With some assistance, she can swim across the pool. It isn't super wide, but it is amazing progress. She knows to hold her breathe and come up for air and moves her arms to propel herself through the water. She still has trouble coordinating kicking and arm movements together, but that will come with practice. She is also able to pick up diving sticks from the bottom of the pool.

The Medical Stuff:

Weight Gain-- that's right, our girl finally gained weight! Nearly 2 lbs. The Bear is going to be a chunky chicken once again. Well maybe not but her ribs don't hang out as much. She is still eating the same amount of food, but we started Carafate for her ulcers. I am thinking she is finally healing and is now able to absorb more nutrients from her food. Fingers crossed she keeps the weight on.

Urology: Six weeks people. Six weeks to get a pre-op appointment!!! Apparently, GI does not do the cecostomy ostomy and button procedure [Malone procedure]. Urology does. So on June 16th, we got referred to urology. She already has a urologist for her chronic urinary retention (which has resolved! Woooohooooo!), yet she was referred to a different doctor, Dr. C. Dr. C was out of town. Once he returned, he took an entire week to get to her chart before referring her to her primary Urologist, Dr. McQ. At this point, Dr. McQ was out of town. She was pretty quick to review Ellie's chart and set up phone conversations and emails with Ellie's gastroenterologist. However, the GI doc wanted to meet with the urologist in person. They were going to meet up in 2 weeks. Both docs conversed this past Tuesday and Dr. McQ worked us into the schedule yesterday. It is a good thing we had a pre-op appointment as GI told the urologist that we just wanted to catheterize and not have a button. Um, no. We want the button. This is why it is good to confer with all people involved in your child's care.

Now, there will be two urologists involved in this 2-4 hours procedure. The goal is to do this laparoscopically, only Ellie may have a super floppy colon due to the musculature issues and being stretched out. If they are not able to do it laparoscopically, they will open her up. I am quite apprehensive about this. I do not want to do this if they have to make a big incision, but we also need to treat her issues. We won't really know what will happen until they get into the OR. So coordination for surgery is tricky as both surgeons need to be available for 4 hours on the same day. Fortunately, we have a tentative date for September 12th. Ellie will be admitted the day before for a bowel prep and then surgery in the afternoon on the 12th. After that, she has a 2-4 day post-op hospital stay. How will I keep this child occupied for that long?! Fingers crossed and prayers that she can have surgery during this time or we are looking at a much later surgical date that may be affected by insurance changes. Fingers crossed that our primary insurance covers this procedure, the bowel prep, and hospital stay (recall they refused to cover Ellie's hospital stay and manometry last month).

Hanging out at the Dentist

Finally, Bear had a blast at the dentist. I don't know why other than the toys and getting her own tube of toothpaste. She was fabulous until it was time to floss. It took two of use to hold her down, but she was great for the exam, brushing, and fluoride treatment. If only she was that good at home!

As for me, my uterine ablation from last mont failed. I am looking at a hysterectomy come November. I am not looking forward to this. It is a big decision and I flip flop back and forth between going through with it. It is a 6 week recovery which should be interesting while caring for Ellie. I will definitely need help.

Friday, June 24, 2016

Where to begin - manometry results and surgery

Oh where to begin. I feel as though this blog has basically turned into medical updates for Ellie. I apologize for that. Please do not think there are no positives in our lives. There are! How about I start with some of the fun, exciting things?

Ellie is trying to talk. We don't always understand what she wants and if Drew doesn't get it he says "go ask mama". If Ellie doesn't know the name of something, she says "ish" [this]. Usually she is pointing in the general direction and we have no idea just what "this" is. The other day she said as clear as day "help please"! She also has this flashcard with a clock on it. Guess what she says? Come on, guess? Cock! I shouldn't laugh, but well, it is funny.

Ellie is a big fan of bubble baths. She constantly says, a clear as day,
"MORE BUBBLES"

Now that summer is underway, Ellie will be starting swim lessons. We go to this amazing instructor. She teaches children who have special needs as well as their siblings in her backyard pool on a 1:1indiviaual basis. Ellie made more progress in her first lesson last summer than in 6 weeks at group Y lessons. She always wants to swim, but gets scared when the water goes above her waist. I may have flashed a few people at a kids pool party when Bear clung to me like a spider monkey and pulled my suit down. Whoops! Not everyone wants to get a full show of my saggy boobs.

Horse therapy has been moved to earlier in the day to avoid the hottest time of the day. Her beloved horse, Charlie, has been retired as he is considered "elderly" in equine terms. She has been riding this sweet horse, Jake, and it has been going well. Jack has been taking a break this summer from therapy sessions which means Ellie is rather reluctant at first to get on the horse.

Here she is trying to make the horse go "fast fast fast"!

Playdates! The nice thing about summer is the flexibility and free time. We have been aiming for weekly playdates with Jack and his sister, Maggie. You all know how much the Bear loves her "Hack". This also means I get a much needed coffee gab session with their mama and my dear friend, Sheryl.

Onward to the medical stuff. Bear with me her as I try to explain this in layman's terms. Recall that 2 weeks ago was hospitalized for a series of tests. One of which was a colon manometry, which looks at the motility (movement, peristalsis) of the colon. Another was an upper GI which looks at the esophagus, stomach, and duodenum (upper portion of the small intestine).

Upper GI:
She continues to have esophageal gastritis, which is inflammation of the esophagus and stomach. The biopsies revealed she is more inflamed that what was seen by the naked eye during the endoscopy. She has been started on carafate (for ulcers) and will continue her protonix. Here's the not so exciting part, the carafate's #1 side effect is. . . you guessed it! Constipation! Yes, I am not kidding. Consti-freaking-pation. Because, you know, she needs more of that.

The biopsies again ruled out: celiac disease, lactose intolerance, and H. pylori.

Colon Manometry:
Basically test this looks at the colon contractions without food in the gut, after eating, and after stimulant laxative administration. You can tell if it is nerve related or smooth muscle related. Ellie's manometry showed that she has low-amplitude decreased contractions. Essentially, the smooth muscle of the colon wall doesn't not contract enough. This means that her colon has trouble pushing stool forward and as such allows more water to be reabsorbed into the gut thus causing the stool to become harder. Eventually, with chronic constipation, the colon stretches out which makes it even more difficult to push out stool. Essentially, chronic constipation worsens constipation.

We learned that Ellie's colon has absolutely no response to the stimulant laxatives. This is explains why all the medications she is on do not really help. Before getting the official results of the manometry, we were to do a trial of high dose SennaLax (she was on a 1/2 dose before) to see if it would work. It did not. She was in so much pain on Tuesday and Wednesday due to being unable to go. Crying, moaning, and clutching her stomach along with having a fever. Perhaps a bit of colitis secondary to constipation? It was the worst I had seen her in a long time and I was ready to take her to the ER when I couldn't get the enema fluid in at first. I finally got the enema in and it helped, but we cannot keep violating her like that.

Anyway, when the doctor called with the results, we were referred directly to pediatric surgery. Three surgical options were discussed, but both GI docs and Drew and I went with the one that would be most appropriate for our family. (As in an ileostomy would not work because Drew wouldn't change it and Ellie would remove the bag getting liquid poop everywhere. I'd be performing 24 hour surveillance.)

We are going with the Malone Procedure or ACE which stands for antegrade colonic enema. Antegrade means "above". Enemas traditionally go through the rectum and only clear out the lower portion of the colon and do not affect higher up. This doesn't truly treat the constipation. By shooting an enema at the beginning of the colon, the colon can remain flushed and clear. Plus, Ellie could come off all her laxatives and perhaps her urinary retention would be resolved. To do this, the appendix is brought to the surface of the abdomen and a button is placed (called an appendicostomy). A saline enema is administered through the button It is scary, but we have learned that all the laxatives in the world, dietary measures, natural remedies, and behavior management are not alleviating the constipation.

Photo: www.nationwidechildrens.org

At this point, we have been referred to a different urologist to the one that we already see. He is the one who will perform the surgery. His medical assistant has been out all week and they are not sure if they can work her in. Their first available appointment is in nearly 2 months. Then who knows how long before surgery is booked. I was really hoping to have this done before school starts, but it isn't looking that way.

A week ago, I had my surgery and it went well. The recovery period was only 3 days which I am relieved because I was told to allow up to 2 weeks.

So that's the big scoop. Life is never dull in the Theurer household.

Tuesday, June 14, 2016

Hospitalization and Procedure Update

Last week Ellie had her 3 day hospital stay. It took a while to get to that point. There was a lot of organization on behalf of 2 GI specialists, Infectious Disease, and Pulmonary. Cigna denied coverage for the bowel prep and colon manometry stating that it was "experimental" and that even if it was covered, they would not consider an overnight stay. Right. . . the bowel prep was needed to clear the colon for the colonoscopy and then the manometry gets performed the following day to allow the bowel "wake up" from the anesthesia. There were appeals on my end and the doctor's end and panic. Fortunately, we have a Medicaid Waiver for children with disabilities program called MDCP. Not many of our kids with Ds qualify anymore, but Ellie does and surprisingly, Medicaid approved her procedures. So clearly not experimental. The thing is, even if it wasn't covered, we would have found a way to make it work. She needed those tests.

Disclosure: I know that there are a lot of new parents of children with Down syndrome who read this blog. I do not want you to think that what is going on with my daughter is the future for your child. Ellie's issues are unique to Ellie. They are not related to Down syndrome.

I made sure to pack all the important things for a hospital stay!

Ellie did totally awesome during her stay. As in she was well behaved aside from trying to yank out her NG tube and she stayed in bed for the entire manometry study (6 hours!). She did great with anesthesia and she SLEPT! Now I think the first night was because she was up late, had versed, and then was up a lot in the middle of the night. The next night might have been due to post-anesthesia, and fentanyl. At home, she is still continuing to wake all of us at 3am. (It was 2:30am before the hospitalization). She is, of course, up for the entire day. Yes, awake from 3am - 7pm. That is another post entirely

Top right: you can see how distended her tummy is from all the GoLytely

So. . . we still don't really have answers.

Bowel Prep:
This was to prepare her for the colonscopy the next day. An entire gallon of GoLytely was run through and NG tube and was, in theory, supposed to clear all the crap out of her intestines. I say "in theory", because it took way longer than anticipated. So long that she wasn't fully cleared out in time for her surgery! Dr. S called it "good enough" and opted not to post-pone the procedures.

Brain MRI with Contrast: Normal!
This was performed because Ellie had a new finding of central sleep apnea on her repeat sleep study from March.

Blood Work:
10 vials, my friends. Then it still wasn't enough so another vial was drawn. We looked at Thyroid levels, Ha1c, CBC, metabolic panel, inflammatory markers, celiac, and IgG/IgM/IgA gammaglobulins, etc.
Of the blood work that is back, all is normal except for a mildly elevated thyroid stimulating hormone [TSH]. After a brief in-hospital endocrine consult, it was recommended that we repeat her TSH and free T4 in 2 weeks at the pediatrician's office. I just love adding more doctor's appointments to our schedule. Hypothyroidism is very common in Ds and it is often said a "not if, but when" they get hypothyroid so I am not overly concerned.

She wasn't able to eat during the bowel prep until after her surgeries so 32 hours without food.
The donut was awesome!

Upper Endoscopy aka EGD:
Back at the end of January, we did an upper endoscopy to definitively rule out celiac and lactose intolerance. All came back normal, but her esophagus, stomach, and duodenum (upper part of small intestine) were inflamed. We stared her on Protonix which is a proton pump inhibitor for ulcers and reflux. Last week, we did a repeat EGD to see if the Protonix worked. I am happy to report that the esophagus and duodenum look good and her gastritis is now mild. The doctor also took 8 EIGHT biopsies of the duodenum as opposed to the usual 2 to double check the celiac screen.

Someone was pretty excited when she found out the bed could move.

Colonoscopy: Normal! No need for any biopsies either

Colon Manometry:
This was the big test to determine how Ellie's colon functions - think contractions or peristalsis. Is she missing nerve ganglion in the colon, delayed transit, etc.? So. . . it was mostly normal. No absence of nerve cells or other motility stuff. She could not eat anything for over 8 hours before the test. She showed normal colon contractions at the beginning. Two hours in, we gave her food. Her colon showed an appropriate response. An hour later, they gave her laxatives. Her colon did not respond, at all. Not a real shocker. There is no explanation for her severe constipation.

Colon Manometry or Colon Motility Study set-up

So now what?
It will be another week or so before we get the biopsy results. It will be another week before we get the full Manometry results. In 2 weeks, we repeat the thyroid panel. We are doing high dose stimulant laxatives (as opposed to her osmotic ones) for 2 weeks on and 2 weeks off. You cannot do stimulant laxatives every day because the gut gets dependent on them. We follow up in 1 month. If not a big improvement, we have to make some big decisions.

Severe constipation is a huge deal. It has lead to Ellie's weight loss. There is an increased risk for gut infection, intestinal perforation which can lead to sepsis. It is causing Ellie's chronic urinary retention, which puts her at high risk for UTIs and even kidney damage. This is Ellie's life. It is getting worse, not better. We have tried everything natural, medical, and everything in between. I was really hoping for more answers so that we would have a "fix" a good treatment plan.

Pages