Sunday Update

Annie is keeping us on our toes. Last night was a little scary with a seizure that Annie really struggled with. Her oxygen saturations got down into the 40s, and stayed there even after her seizure stopped. They put her on oxygen and she required 3 liters for her saturation to recover. The good news is that she was able to come off the oxygen several hours later and is now back to 100% O2 sats. Now that Annie has her GJ tube, we can put her seizure meds straight into her intestines, so hopefully those will get absorbed better and the seizures will start to decrease.

Last night she collected another 300-400cc from her gastric suction. We can't figure out why she is producing such volume, especially because it seems to only be at night. She continues to be connected to the g-tube suction today.

Annie got her PICC line last night and her previous midline IV removed. She's receiving all her nutrition from the TPN through that IV now. The PICC line is kinking in her arm when she lays a certain way, so she might need to have the PICC adjusted, but that shouldn't be too big of an issue.

Pressure sores have started to become a problem, which usually happen with long hospitalizations, despite our best efforts. So today she received a special bed that will help, along with some special pillows and cushions. Today she has felt better being up in her wheelchair and getting a break from laying down.

We've started giving her pedialyte straight into her intestines through the J tube today. She's only getting 5cc/hr right now to see how she tolerates it. If she does well, we'll start increasing that rate and then eventually we'll gradually transition to formula through her J tube. She has not been retching or vomiting as much today, so we are keeping our fingers crossed that her GI tract "wakes up" and starts working as it should. Once we see that her J tube feedings are working then we'll start the process all over again to gradually try to feed her through the G tube directly into her stomach and hope she can tolerate that.

Annie continues to receive her IV antibiotics and we'll check her white blood count again tomorrow to see if things are improving. She seems to be feeling a little bit better this afternoon, so maybe the antibiotics are working and there aren't any other problems. Only time will tell.

We really appreciate all the prayers, dinners, visitors, texts, and phone calls! Thank you so much for thinking about us!


This is Annie's new GJ tube--installed in the same stoma or hole where her G tube was.  The G port is shown connected to her gastric suction, working to empty out her stomach. The J port bypasses her stomach and goes directly into her small intestines where we're now delivering her seizure meds and starting a slow pedialyte feed by pump.

This is Annie's new PICC line that was placed last night. This picture doesn't show anything hooked up to it yet, but she's now getting all her nutrition and most of her meds through this line.

Lexie enjoys visiting Annie each day, and not just because she gets to play video games up here. One of the hardest jobs of special needs parenting is trying to maintain a sense of normalcy for our other kids. Their worlds continue on at school and with friends. They're pretty used to hospitalizations, but it gets worrisome for them too at times.

Life continues on, even with a sister in the hospital, so here is a picture of Molly at her first big marching band performance! (She's in the middle.) My sweet friend took this picture for me. We felt bad we couldn't be there to watch Molly perform, but high school football games are broadcast on TV here, so we watched her half time show on TV at the hospital. The only problem was that the band was just in the background as they interviewed different players and coaches during half time. So we didn't get to see much of the show and never could find Molly on the field. I can't wait to see her show in person!

Saturday Update

There has been so much going on the last 24 hours. Last night around midnight Annie started vomiting copious amounts of dark brown fluids. Since she still isn't eating or drinking anything, the volume was rather surprising and the color was slightly alarming. We got them to move her 6:00am abdominal x-ray to before 1:00am. The techs can't say anything about the films, but the nurse and I both saw it. We could clearly see a large mass of barium still in her gut from her upper GI study on Thursday. They didn't allow me to spend much time looking at it, so my initial thought was that she in fact did have an obstruction with all that barium still sitting in there. But we had to wait until morning to get the official report.

The rest of the night Annie continued to vomit lots of dark brown fluid. We connected her g-tube to suction hoping to keep her stomach empty that way, and that has helped a fair amount, but she still continued to vomit through the night and continues to retch and dry heave all day. She continues to be hooked to g-tube suction today. After several more seizures last night, and two failed blood draws, morning came before we knew it and before we got any sleep.

The interventional radiologist and the hospitalist met with me at the nurses' station to look at all of Annie's imaging together and figure out what's going on. Surprisingly, the barium we saw on her abdominal x-ray was all in her ascending colon, indicating that there are no obstructions. But she does have an ileus, meaning there's poor motility through her small and/or large bowel.

We reviewed all her upper GI images and again, he confirmed that they looked good too. I'm stunned. The interventional radiologist also looked through the renal sonogram images with me and confirmed what the urologist said about the pyelonephritis being only borderline present. Which has some of us on the team wondering why she'd be so sick if it's just a minor case of pyelonephritis. Several of us still believe it is secondary to a different issue.

We agreed that with no obstructions, the GJ tube is still something worth trying. Once Annie recovers, we can always try going back to the G-tube eventually, which I'll want to do. So we are just waiting for her to come out of surgery for the GJ tube placement as well as a PICC line so Annie can receive a more complete TPN IV solution to give her some nutrition.

After that, the plan is to continue the bactrim and watch her white blood count. It came down today from 28,000 to 21,000. So maybe we're moving in the right direction. Her symptoms just don't show it.



Below is the kind of G-button Annie has had since she was 2 years old. The top port allows access straight into her stomach. The side port fills the balloon which holds the button in place. (The balloon is inside her stomach.) We replace this button every 3 months and we just do it ourselves at home. If this button clogs (which happens somewhat frequently with one of her medications), we can just take it out of her, clear the clog and insert it back into her stomach.

Below is a GJ tube which they are inserting today in place of the G-button. The top has three ports instead of two. It has the same port that allows direct access to the stomach, and the same balloon port to fill the balloon that holds it in place, but the GJ tube also has a third port that allows access directly to the jejunum (small intestine). So you can see the balloon that gets inflated in Annie's stomach like the G-button, and then below the balloon is a tube that gets snaked down into the jejunum. That is why this tube has to be placed under general anesthesia with ultrasound guidance. So when this tube needs to be replaced, or if it clogs, we can't just take it out at home and put it back in.

The purpose of this GJ tube is to allow us to deliver her medications directly to her jejunum, bypassing her stomach, in the hopes that her medications will absorb more quickly before getting vomited up (particularly her seizure medication). This will also help us possibly resume feedings sooner if she can tolerate her formula straight to her jejunum before she can tolerate food in her stomach.

Friday Update

Whew! It's been another crazy day! I have yet to be bored during this hospital stay! I wish I could say that the vomiting and diarrhea have improved, but they have not. We are discontinuing all non-essential medications through her g-tube in hopes that a smaller volume of meds will help the more critical meds (like her seizure med) stay down longer and hopefully get absorbed.

In order to help with that, we are trying a dose of zofran before her daily g-tube meds. We were hesitant to try it because zofran often causes Annie to have seizures, but it was worth a shot. Sure enough, Annie's seizures have increased, in intensity, frequency, and length. One grand mal seizure today was particularly scary and one of the worst we've ever seen. She didn't vomit for about 3-4 hours after the zofran, which was a nice break, but then she made up for it with lots of vomiting once the zofran wore off. Today she continues to vomit about every 20-30 minutes, even though we aren't putting anything in her stomach.

Since Annie has had no nutrition in about 10 days or so, they will be placing a central line tomorrow afternoon. That's a procedure that will be done in the OR under general anesthesia. The central line will allow her to receive TPN and start getting some nutrition. While she is under, they will also be placing a GJ tube. Annie currently has a G-tube which we use (when she's well) to feed her all her food and meds. It's a port directly into her stomach. Tomorrow they will be replacing her g-tube port with a GJ port. This will allow the same access into her stomach, but it will also allow access directly into her jejunum (small intestines). This will allow us to by-pass her stomach completely and get her seizure med down deeper into her GI tract with the hopes that it will have a better chance of being absorbed before Annie vomits. We anticipate that the GJ tube will just be temporary and once Annie recovers, she can go back to the G-tube which is simpler and easier for us to manage and change ourselves at home.

We are keeping Annie NPO for now, although the GI doctor is concerned about gastroparesis and wants her to start pedialyte slowly again. But with her still vomiting so much, we just don't think that's a good idea. And she'll have to be NPO for her procedures tomorrow, so we will wait another day to decide that. Annie also might be having a small bowel follow through study which she'd need to be NPO for.

But first, they will do an abdominal x-ray tomorrow to look for any bowel obstructions. I suspect she has some kind of small bowel obstruction because of the volume she is vomiting up, despite not receiving anything in her stomach. If the x-ray is inconclusive, they will consider doing a small bowel follow through using barium as well as a gastric emptying study.  And if all that looks good, it's probably time to start exploring neurological issues. There is a small possibility that all her issues will resolve with a few more doses of her antibiotic for her pyelonephritis, but again, the amount of stomach and intestinal juices coming up indicates there is probably some kind of obstruction. 

We are still waiting for the blood culture results which will be back tomorrow afternoon. Once those are back and negative, they will be able to place the central line. Her other labs looks pretty good, so we don't anticipate a positive blood culture. But if it is positive, there will be a big concern about the rods in her back and they will consider doing a CT scan to check for infection in her spine.We don't anticipate that being the case, but if so, they would mostly likely remove all the hardware in her back. 

So hopefully tomorrow we'll find the issue with the abdominal x-ray and be on the way to treatment and recovery!

Thursday Test Results

Annie's chest x-ray shows clear lungs with no evidence of aspiration or pneumonia.

Annie's spinal x-ray looked fine, so they don't plan to do a CT scan.

The upper GI study was unremarkable.

The renal sonogram showed good kidney function but also showed pyelonephritis in her right kidney. So the current plan is to lengthen her bactrim treatment to treat her kidneys. We don't believe she's gotten any benefit from the oral form with all her vomiting, so we hope the IV form will start to help her feel better. If not, we'll get neurology on board to explore other possibilities.

Our urologist still believes that the UTI and kidney infection are secondary to something else going on, but we'll just have to wait and see how she does on the bactrim.

Results from the blood culture will take a couple days, but so far her ESR looks good.

Thursday Update: Lots of Testing

A lot has happened today. Overnight they bumped up the pedialyte to 20cc/hr, but Annie did not tolerate that, so we went back down to 10cc/hr, but today she hasn't been able to tolerate that either. So fluids into her tummy have stopped. She is still vomiting. Still having diarrhea. She also has been in a bit of pain last night and today, although it is very intermittent. This is the first pain she's had since she was admitted.

Today Annie's WBC is up to 27, which is higher than when we first started the antibiotics, indicating that either the oral antibiotics aren't staying down (very possible), or there is a bigger infection in her body besides the UTI (very probable), or both. So they are switching to IV bactrim. We, along with the urologist believe that her UTI and possible kidney infection are only secondary to a bigger underlying problem. The big mystery is that she has no fever.

We spent the afternoon in radiology getting several tests done. First Annie had a renal sonogram, followed by a spinal x-ray and chest x-ray, then an upper GI study--they insert barium in her stomach under x-ray to watch the flow of the barium through her stomach and into her small intestines. As expected, she vomited it all up on the table. She vomited in her room just before the exams, again in the elevator down to radiology, and again during the renal sonogram. She also had a really hard 30 minute seizure induced by a nurse who startled her awake suddenly.

So far from these tests, we just know that the duodenum is not rotated and everything looked good on the upper GI. The initial images from the renal sonogram look good, but we're waiting for the report from the radiologist to see if there are any indications of a kidney infection. We got x-rays of her back to check that her spinal rods have not become infected. If so, they would have to surgically remove both rods in a major surgery. If the x-ray is inconclusive, they'll do a CT scan of her spine. The chest x-ray is to check for pneumonia, especially since she vomited on the OR table yesterday without her airway protected. But we don't suspect she aspirated because her O2 sats are great. They also drew a blood culture to check for infection in her blood.

Once these results all come back, if nothing is conclusive, we'll start exploring neurological possibilities. Any increase of pressure in her brain would cause vomiting but probably not that high of a WBC. So Annie continues to be a mystery. I'm so ready to just find the problem so we can move on with treatment and get her feeling better! All of your love and prayers are very much appreciated!

Wednesday Afternoon Scope Results

Annie's scopes today both looked perfectly normal with no problems. All her tissues are a beautiful pink with no signs of inflammation, no colitis, and no signs of obstruction. They biopsied her colon so we'll get those results later, but based on the looks of her colon, we don't anticipate the biopsy results to be significant.

We are baffled. The GI wants to gradually start her feeds again, but we don't believe that Annie is going to tolerate them since she's barely tolerating meds in her tummy.  If she doesn't tolerate her feeds, she will have an upper GI study done and if that's inconclusive, they'll do a gastric emptying test. Yesterday our urologist also said he wanted to do a renal sonogram, so that might happen in the next day or two as well.

It's been about 9 days since Annie last had any kind of nutrition. If she doesn't tolerate her feeds, they are talking about starting her on TPN which would require the placement of a PICC line.

Our GI suspects that her UTI is making her sick and once Annie gets a couple more doses of the bactrim she'll start to improve. We hope he's right!

Wednesday Morning Update: Procedure Prep

Annie's colonoscopy prep hasn't gone well. She was given a couple different fluids to help with clean out but very little stayed down. She is still struggling to keep down her other regular meds as well. Hydration continues to be a problem despite the IV. She is receiving another IV bolus this morning to help prepare her for her procedure. Low potassium is also still a concern heading in to surgery, so we are closely watching her electrolytes.

Her endoscopy and colonoscopy have been pushed back a little later today--currently scheduled now for 11:15, still dependent on her next lab values and electrolyte levels.

We highly suspect that she has a gastric outlet obstruction. Whenever Annie is sick and vomiting, it is normal for her to bring up bile because she had a pyloroplasty when she was little. That pyloroplasty opened up the bottom of her stomach, allowing her stomach to empty more efficiently. (When she was 2 years old, her stomach stopped emptying.) So bile usually finds its way easily into her stomach and often comes up when she's sick. However, we haven't seen any bile in the 9 days she's been vomiting and nothing is staying in her stomach. We are seeing medications come back up literally days after they were given. So we really suspect they find some sort of blockage. But we'll wait and see what the scope today shows. The diarrhea is most likely from a different issue, still possibly a colitis flare up, but we still aren't sure. Annie has started on bactrim for her UTI, but we're not sure any of it is getting into her system.

Molly and Lexie have a lot going on with school but they worry about Annie. We are trying to provide some sort of normal for them, but they even say that hospitalizations feel rather normal and they enjoy being able to come visit Annie in the evenings.

Thank you so much to everyone who is keeping Annie and our family in your prayers!



I've discovered why Justin has been so kind to spend the night at the hospital two nights in a row. He says Annie really likes watching video games!

It's Been a Long Time!

It's been a long time since Annie has been in the hospital, but she was admitted yesterday. She has had some GI problems since the beginning of the month, but they intensified last week enough to land her in the hospital.

We suspect that she might be having an ulcerative colitis flare up, but still don't have definite answers. Annie was diagnosed with ulcerative colitis several years ago but it has been well managed with medication and has stayed in remission. Last week Annie also began vomiting, which isn't typically expected with UC. The vomiting has persisted for over a week, and combined with the other GI troubles, she has become very dehydrated. Yesterday they pushed a lot of IV fluids with no real improvement. Things have been a little scary as her electrolytes have gotten all off balance and flashbacks of our 2014 scare have been heavy on our minds.

Annie's seizures have also increased this past week, having several a day, since it's a struggle to keep her seizure meds down. But now that she's got her IV and can rest her tummy more, the seizures are starting to improve some.

Annie's electrolytes have become more stable today, so she is less lethargic now than she was yesterday. However, she is still dehydrated. More IV boluses may be ordered on top of the 3 she has already had in the last 24 hours. She is scheduled for an endoscopy and colonoscopy tomorrow morning if we can get her well hydrated by then. That will hopefully give us some answers and help us start treatment.  Annie also has a UTI, and is starting treatment for that today, although we believe the UTI is secondary to the underlying issue.

It's been such a long time since we were at Children's that a few things have changed. Most of them small, but the big change is all the construction on their expansion project. Our typical view overlooking the city has been replaced partially by construction. It's actually quite interesting to watch the workers, but there are times we do feel like they are looking right into our room!

Happenings at School, a Birthday, and Christmas

Molly is first chair clarinet in her middle school band.

Lexie just turned 10!

Annie loves school and has a ton of friends.

The girl at the piano behind all the hair is Molly.  She's the only 7th grader in jazz band and only one of two girls!

Molly took second place in her school's geography bee!

Christmas Eve

Finally, New Family Pictures!

These new pictures are long overdue! We've been waiting 3 years for Justin's jaw to heal and for his braces to come off, and for Molly's braces to come off too.  (Lexie's braces will be going on soon!)