Date Night!

Fortunately, the last 24 hours have been rather uneventful for Annie.  She had a few moments of pain yesterday, but also a few giggles.  Since receiving her subclavian line yesterday, Annie is now receiving more concentrated TPN.  She's getting about 950 calories a day now instead of only the 450 calories that her regular IV line could tolerate.  They have also increased her lipids too.  The infectious diseases doctor visited today and is feeling good about the very, very small progress Annie is making on the gamma globulin, so another dose was ordered today.  Again, since it is so incredibly expensive, they are re-assessing every day and just taking one day at a time. Annie's diarrhea has only changed very slightly, but it's enough of a small improvement that they are hopeful the gamma globulin may eventually work.

The most exciting thing about the past 24 hours...  Justin and I got to spend more than just a few minutes a day with each other!  Between each of us leaving town on separate trips and Annie in the hospital, we've really only seen each other in passing since October 14th.  So yesterday evening, my dear mother volunteered to stay with Annie at the hospital so Justin and I could take Molly and Lexie to the trunk-or-treat at our church and have a date. (Pictures of the ballerina and Snow White coming soon.)  It was fun to be together and see Molly and Lexie have such a fun time with us since they've been a little neglected the past few weeks, but it was sad to not have Annie with us to celebrate Halloween last night.  Grandpa put Molly and Lexie to bed at home and Justin and I left for our short date.  We went for a walk, browsed some stores, and got some dessert.  It was a wonderful, much-needed break!

New Subclavian Line

Annie went to the operating room this morning at 8:00am to get her PICC line placed under general anesthesia. The PICC team tried and failed at getting the line started in her arm, so they called in a general surgeon.  The general surgeon also failed at starting the PICC line in her arm.  At that point the surgeon came out to talk to Justin to tell him that they are going to have to put a central line in her jugular vein in her neck, but that there are risks with that--like puncturing her lung which would require a tube in her lung to keep it inflated!  Yikes!  But fortunately, instead, they actually ended up placing a subclavian line (a central line inserted near her collar bone that runs to just above her heart).

So now we don't have to worry anymore about her IVs failing every day and causing painful swelling.  She can also now start to receive more concentrated TPN with more lipids, calories, proteins, calcium, and nutrients.  (After holding her yesterday for so long, I was stunned to realize really how thin her arms and legs have gotten!)  The subclavian line will also allow them to take blood without more pokes.  So hopefully she can start to gain a little bit more strength.  She was fully intubated and under general anesthesia for the procedure and then in the recovery room for about an hour to monitor her breathing after being extubated.  She's been in a lot of pain again this morning with a raspy and hoarse cry from the intubation, so they are giving her morphine to keep her comfortable.  Please continue to keep her in your prayers--that she can start showing an improvement in fighting off this c-diff.

A Rough Day, But a Happy Ending

The infectious diseases team met with us this morning.  It is all agreed that Annie needs another dose of gamma globulin today.  I'm not sure how many more additional doses they will consider giving her, but the ID doctor did mention that if the diarrhea still isn't improving soon, they would be considering a fecal transplant for next week.  I'm sure that sounds gross to everyone, but just FYI, the fecal matter from the household member is heavily filtered and mixed with other substances before they put it in Annie's tummy through her g-tube.  The success rate of fecal transplant in treating c-diff is supposedly pretty high (85%), so if the gamma globulin treatments don't work (we still have high hopes for it to work), then at least we are encouraged that fecal transplant might work.

So just as the nurse was bringing in the gamma globulin and setting up the feeding bag, Annie started screaming in pain.  Since I wanted to make sure that Annie wouldn't vomit up the gamma globulin, it was agreed that we should wait to give it to her until she calmed down.  She had a fit of pain like this last night and only calmed down once she received motrin, so I immediately asked for motrin, and held Annie on my lap to rock her.  It took the motrin a full hour to start to work--the longest hour of the entire hospital stay so far.   It just broke my heart to sit and hold her screaming in pain and not be able to do anything at all to help her. 

I held her for another hour after the motrin started to work and she took two short naps on my lap.  I love the peaceful spirit that I always feel when I'm able to quietly hold Annie.  I truly know that she is a celestial spirit--an angel here on earth.  I feel incredibly humbled and blessed to be her mother.  She is such an incredible example of patience and long-suffering and finding joy and happiness even in the middle of all her struggles and pain.  She is my hero and I love her so much!

So after rocking Annie for 2 hours, I called the nurse in to start her gamma globulin but the nurses said they had orders to hold the gamma globulin because there was a possibility that Annie could actually get her PICC line later in the afternoon! (She can't have anything in her tummy for several hours before the procedure.)  So we were really excited that they were even considering doing it today.  So we waited around for several hours until we were finally told that they couldn't do it that afternoon, but got her scheduled for Saturday morning!  So we got the green light to finally give her the gamma globulin and she kept all of it down, so hooray! So hopefully we'll start to see an improvement soon and she'll be much more comfortable once she gets the PICC line in and doesn't have to get a new IV every day and keep getting poked for daily blood work! Annie continued fussing off and on the rest of the evening--it was a rough day for her with a lot of pain, but at least it ended with the good news about the PICC line scheduled in the morning. 

Baby Steps

So yesterday I found out that Annie's gamma globulin is not just a one-time dose treatment--thank goodness.  But they only ordered one dose to begin with since they weren't sure how she would tolerate it.  But since she tolerated it well, they plan to continue that therapy.  Each dose is so incredibly expensive that they haven't planned out a regimen, but will continue to assess her each day and take one day at a time.  By 3:00pm yesterday, Annie had gone an amazing 6 hours without a poopy diaper.  It was around this time that I was meeting with the infectious diseases team, so they felt like maybe there had been a small improvement from her first dose of gamma globulin on Wednesday, so they decided to not give her any more yesterday.  But we all know how tricky Annie can be... she had a huge blow out shortly after the infectious diseases team left!  We'll consult with them again this afternoon, but most likely, Annie will get another gamma globulin dose today.

This morning at 3:00am, Annie's IV went bad, so they struggled again to get another IV in--this time in her right foot.  Her right hand and arm are now completely swollen where her IV infiltrated and is rather tender.  This new IV in her foot is her sixth IV since she was admitted to the hospital 12 days ago, and is her fifth IV since she started TPN about six days ago.  We are still waiting for Annie to get her PICC line.  She has to be fever free for 48 hours before she can get a PICC.  As of this morning, her temp has been equal to or less than 100.4 for 48 hours now, but since 100.4 is borderline, they're having to consult with the PICC team and anesthesiology to see if they will qualify her with those temps.  So there is a teeny tiny chance that Annie might get her PICC this afternoon, but it's more likely that it won't be until Monday, assuming she can keep her temps down over the weekend.  They are fairly confident that her temps are coming from her bowel inflammation since her blood cultures and urine cultures keep coming back negative, but having a fever would still pose a risk with the PICC. So as usual, we'll wait and see.

Trying Gamma Globulin and Waiting

Annie's temperature continues to be inconsistent, so they've told us that she really can't get her PICC line until she's be a full 48 hours without a fever.  Her temps will stay down for 12 hours or so, then go up for 6-8 hours, then return to normal, then spike again.  I'm starting to wonder if she will ever qualify for the PICC line.  Right now they feel like the risks of the PICC with a fever by far outweigh the benefits she would get from the PICC.  She does still have a peripheral IV and continues to receive TPN and lipids, but the peripheral IVs just don't tolerate TPN and lipids for long.  The cause of these temperature spikes are still a mystery.  They did more blood work yesterday including a blood culture, and also a urine culture.

The infectious diseases team tried something new yesterday that is rather experimental.  Annie got a dose of gamma globulin fed through her g-tube.  Gamma globulin are protein anitbodies that have been extracted from the blood of donors.  Supposedly, when given through the stomach, it can bind to the c-diff toxins and help prevent the diarrhea.  Although it doesn't necessarily treat the actual c-diff, it can treat the diarrhea symptoms.  This in turn may actually allow the antibiotics to remain in her bowel longer and hopefully be more effective.  So Annie got a one-time dose of gamma globulin last night from 4:00-6:00pm.  The ID team says that if the gamma globulin works, we could see an improvement in the diarrhea in just a day or two. 

I'm starting to get rather discouraged.  Today is day 11 in the hospital and she's made no improvement with the c-diff.  It's a blessing that she is hydrated and happy, but as far as treating what's wrong, no progress has been made.  The doctors all agree that we need to stop feeding Annie and give her bowel rest for 1-2 weeks.  So all of her g-tube feedings have been stopped for an indefinite length of time--most likely until the diarrhea starts to improve.

So the only plan in place is to watch her temps and get a PICC line in as soon as she's able to go 48 hours without a fever, stop her feeds until diarrhea improves, continue giving vancomycin and flagyl, and wait some more.  The GI is concerned about other issues going on since c-diff would normally have responded by now, but they are too fearful to do a colonoscopy right now.  Because Annie is still showing high levels of c-diff, if they were to perforate her bowel during a colonoscopy, the c-diff could "escape" the colon and cause much more serious problems, not to mention the issues related to the perforation itself.  So for now, they are not willing to take that risk.  They will begin to consider a colonoscopy only after the diarrhea has started to improve.

People have started asking me if we know when Annie will get to come home.  No one has mentioned any kid of time line to us.  Considering that after 11 days now and no progress has been made, we expect to be here a long time.  With the treatments and strategies they are trying, we expect that Annie will be in the hospital for several more weeks.  We try to not think that far ahead, but try to just take one day at a time.

Annie Keeps Things Interesting...

Since my last post, Annie hasn't had much change at all.  The rest of Monday was rather calm--just a lot of vomiting.  Yesterday Annie continued to vomit pretty regularly, but they continued to run her feedings at 20cc/hr anyway, with just some small breaks after each retching session.  Yesterday they finally gave us the green light for getting the PICC line scheduled.  Because Annie is a respiratory risk with her apnea and aspiration, she'll have to go to the OR and receive general anesthesia in order for them to place the PICC line.  A PICC line is just a heavy duty IV that will go in her arm and have a catheter run through a vein up her arm and end just above her heart.  This way they can deliver more concentrated TPN, give meds, and draw blood, without doing more pokes.  She's had about 5 different IVs in the last 10 days so the PICC will prevent needing more IVs. 

We actually had a pretty good night last night because at around 2:30am, the nurses noticed that Annie's IV had gone bad and they had to remove it.  They tried for about an hour to find somewhere else to put a new IV without success.  So from 2:30am on, Annie was not connected to any kind of pump (IV or feeding) which meant our room was much darker and quieter without alarms going off.  I think we both slept well!  So Annie's PICC line is scheduled for noon today, but they just took her vitals and her temp is back up to 101.2.  (She has to be fever free for 48 hours before they can do a PICC.)  So now we're waiting to find out if we can really get the PICC today or not.  This little girl likes to keep things interesting!  But she's up in her chair now, playing with beads, happy and giggling.  You'd never know anything was wrong with her by just looking at her this morning.  But with no IV in and no g-tube feedings, they've got to come up with a plan soon.  So we're just waiting.

We did get the stool results back early this morning.  Annie is still positive for the toxins released from the c-diff.  So now we just need to wait for the infectious diseases doctor to come in and tell us what the plan is.  They might continue to keep her on the same vancomycin and flagyl that she's been getting the last 10 days, or they might change to some different drugs.  But either way, the whole team agrees that Annie needs to have bowel rest so we won't be feeding her anything at all until further notice--some say until the diarrhea stops.  Thus the need for the PICC line... thus the frustration that she has a temp this morning.  Hopefully I can give a happy update later today.

A Happy Evening

Grandma and Grandpa came to see Annie at the hospital last night and she started giggling.  At a few points she was laughing so hard she had to stop to catch her breath!  Here are some pictures from last night.

Annie had another grand mal seizure last night and got ativan.  The night was rather uneventful except for needing yet another new IV line.  Her TPN is making her IV lines go bad rather quickly.  As long as she can continue to stay fever free for another 12-24 hours, then they'll start the PICC line for her to receive her TPN through.  This morning Annie was still rather sleepy from last night's ativan.  She had another grand mal this morning also, but since seizures don't scare me as badly as breathing problems from so much sedation from the ativan, I had them not give her any more this morning.  She was incredibly happy in her chair this morning, but just started getting fussy this afternoon.  Here's a picture from her happy moment this morning just after a sponge bath and getting her hair washed.  Again, don't be fooled into thinking she's always this happy. 

Infectious diseases came in today--a new team is on floor rotations this week, so it's a new ID doctor than the one we had last week.  I mentioned that the previous ID doctor said c-diff is just really slow to respond to antibiotics, and the new ID doctor today said, "That's true, c-diff is slow to respond, but not THIS slow."  So there's some concern that Annie has some other underlying issues going on.  The pediatrician this morning said he wanted to consult with GI about doing a colonoscopy, but ID said they want to wait since the risk of bowel perforation dramatically increases with all the inflammation Annie has.  So instead, ID is going to do yet another stool sample to check the level of toxins which should give them a better idea of what's going on and whether the c-diff just isn't responding to the medications, or if there might be other problems.  They continue to watch the stool culture to find out if they need to start trying different antibiotics.

Annie is still rather swollen.  Her hands and feet are the worst right now, partially due to IVs that have gone bad.  The doctor explained today why they can't give her albumin by IV to reduce the swelling.  When given by IV, the albumin passes through the body very quickly, so since Annie's urination is still not really great, they fear that the IV albumin would only make the swelling worse.  But she's on the TPN and lipids, and once she gets even more of that through the PICC line here hopefully soon the swelling should go down even more.

One new thing that has broken up our day a little... a 12 year old girl from our church group is having scoliosis surgery today here at the same hospital.  So it's been a nice break to go down to surgery waiting and chat with them and get updates on their daughter.  She's recovering in a room just two doors down from ours, so it will be nice to have some familiar faces on the floor.

A Rather Uneventful Day

Today was thankfully rather uneventful.  Annie has still not shown any signs of improvement with the c-diff, but she was rather alert and happy most of the day, even giggling for quite a while this evening once Grandma and Grandpa got here. (I hope to post pictures in the morning.)

Last night Annie started receiving TPN through her new IV line.  They had to start an additional IV in her upper arm as well since TPN can't go through the same line as her lipids.  However, at one point in the night the IV in her wrist went bad and had to be pulled.  So they moved the TPN to her upper arm, and just have to stop it at certain points to give her the lipids and other medications.  They continue to monitor her temperature and as soon as it's been 48 hours since she's had a fever they'll start a PICC line through which they can give her more concentrated TPN.  She hasn't had a fever today at all, so they have stopped the IV vancomycin and cefepime and started the vancomycin via g-tube again.  So by tomorrow night or Tuesday morning they might do the PICC line assuming her temps stay normal.

Annie's swelling has decreased slightly, but she's still pretty swollen.  They also increased her neocate feeding to 20cc/hr (up from 10cc/hr yesterday).  She threw up once this afternoon, but that might also have been due to lots of air in her tummy.  She's requiring venting every 6 hours and she always has a lot of air.

So today was rather encouraging.  Although there's still no improvement in diarrhea and her feeds are still incredibly slow, she was extremely happy today.  It's nice to know that she's starting to get calories, proteins, and lipids from the TPN, so hopefully that will increase her strength and decrease her swelling.  She did have another grand mal seizure today, so we'll continue to monitor seizures as well.  Thank you for everyone's love and concern.  We really do appreciate everyone's prayers on her behalf.  They are definitely felt.

A Scary Morning

Let's see... where did I leave off in my earlier post?  Ah, yes, Annie had her grand mal seizure and got ativan.  Then she slowly started to struggle with her breathing.  We suspect that she might have aspirated last night with all the vomiting and coughing.  This morning she still sounded really junky, but I didn't realize really how bad her breathing had gotten until the infectious diseases doctor stopped in and said she wasn't concerned that the c-diff hasn't responded to treatment yet, but she was rather concerned about Annie's high temp (101.7) and her labored and fast breathing.  At that point I realized, oh ya, it's gradually gotten a little worse.

We repositioned her to try to open her airway, but her breathing continued to worsen.  I even put her CPAP on her to help open her airway, but the stinker wouldn't keep her mouth closed.  Her breathing eventually got to where Annie's chest and stomach were heaving with each breath, and we could tell she wasn't moving much air even with her CPAP on.  By this time I was even sensing the nervousness in the nurses.  We repositioned Annie yet again, elevating the head of her bed even higher with even more rolls behind her neck to tip her head back.  The fact that she was completely passed out and totally unaware of us even moving her didn't help settle my nerves either.  We continued like this for a little over 2 hours, during which they did another chest x-ray to check for pneumonia, drew blood for another blood culture, and did a separate finger poke to check her blood gases.  All the while her oxygen sats were hanging out in the 90s with only an occasional dip into the low 80s, which isn't terrible, but not great, especially considering that she had CPAP on.

Annie eventually started to become a little more alert, at which point she started crying.  Nothing seemed to help, so I got her in her wheelchair to sit up for a while.  She continued to cry until a little while after her friend came to visit.  I'm not sure if it was a little extra motrin or the kindess of a good friend (probably a little of both) but she soon was all smiles.  This little girl loves sending her momma on an emotional roller coaster ride!  We still don't know for sure if she has pneumonia, but they'll repeat the chest x-ray tomorrow to take another look. 

So, back to the ID consult... I guess they're not concerned that Annie's diarrhea and vomiting haven't improved because they said c-diff is usually very slow to respond to treatment.  They said vomiting is fairly normal at this point with c-diff because there is so much inflammation that it's normal to not be able to tolerate feeds.  So I guess that's encouraging--I just need to have more patience.

We also consulted with GI today.  Since Annie isn't tolerating her feeds, and since she's now been in the hospital 6 days, they know Annie needs to start receiving more nutrition, especially to help the swelling go down.  So tonight they plan to start her on TPN through her regular IV line--she got a new one today.  Ideally TPN would go through a PICC line, but because Annie has an unexplained fever, they can't start a PICC line since it would potentially increase her risk for even more infection.  So they can only give Annie a diluted form of TPN through her regular IV line, which isn't ideal, but it's the only option right now until they can figure out what is causing her fever.  She started neocate jr. at 10cc/hr (about 1/3 oz every hour) and has tolerated that just fine so far.  If she tolerates it well through the night they might increase that to 20cc/hr tomorrow.  If she can't start tolerating more formula, they will consider inserting a G/J-button in place of her G-button.  A G/J-button would go in the same stoma (hole) in her stomach, but it has a small tube that would snake down through her stomach into her intestines so the formula would bypass her stomach and go directly into her intestines for absorption.  But they probably won't consider that until Monday when the interventional radiologist is available.

Annie was rather pleasant this afternoon while she was sitting in her chair, so we ended up leaving her there several hours.  It was a few hours too many though, because her feet and ankles got incredibly swollen--worse than they ever have been.  So we had to lay her down and elevate her feet.  She also never had a wet diaper during all that time, but they think that might have to do with all the fluid retention.

So, test results from today so far... her urine culture is still negative, her blood culture is still negative, and her chest x-ray looked the same as it did on Wednesday.  Her temperature is still high, so they decided to start IV antibiotics vancomycin and cefepime to treat any infection that might be brewing somewhere.  They plan to keep her on those antibiotics for 24-48 hours or until her fever goes away.  This afternoon her temp was 100.1 even with her on motrin, so hopefully that will improve soon.

I'm grateful that Annie gave us a chance to relax a little bit more this afternoon and evening after scaring us so badly this morning with her breathing issues.  If all of that WAS due to the ativan, I would MUCH rather watch her have seizures than struggle with those breathing issues!  Neither are great options, but I'm used to seeing seizures.  So hopefully we'll have a better night tonight than last night and an uneventful day tomorrow.  I've never been in the hospital with Annie before when I've been so busy!  I can't believe how fast the days are passing when we're almost constantly consulting with so many doctors and dealing with new issues.  Hopefully things will calm down soon and Annie can start feeling better with no new complications!

A Visit From a Friend

Annie was having an incredibly rough morning and started crying this afternoon.  I got Annie in her chair thinking she might want a position change.  She calmed down just for a while, but then started crying again.  But then some friends came to visit.  Annie loved having her friend come!  She stopped crying and started smiling!  Hooray for friends!

Taking Steps Backwards

I was by far too exhausted to post an update last night, but Annie had a fairly uneventful day yesterday.  Her feedings continued at 20cc/hr (her normal rate is 85cc/hr) and she started having more regular wet diapers.  I was feeling incredibly encouraged until the nurse came to do Annie vitals around 4:00pm.  They got Annie's temperature at 101.1.  My immediate thought was a UTI from having the foley in.  So they straight cathed her for a urine culture.  I was encouraged that she had a decent amount of urine (still not as much as they would expect for being on IV fluids) but the urine is now a dark yellow instead of a dark brown.

The pediatrician and GI spoke with us last night.  The pediatrician is discouraged that Annie has not made any progress and the GI agreed that c-diff would normally have responded to the antibiotics by now.  So they ordered a more extensive blood test, and took a stool sample.

Annie had a terrible night last night.  The room was filled with doctors and nurses for about 3 hours during the night.  She started vomiting around 9:00pm, and was able to rest for a short while before the continual stream of doctors and nurses started around 1:00am.  Annie started throwing up again and had a huge diarrhea blow-out up to her shoulders.  A little bit later her vomit contained blood.  They stopped her feedings completely and connected her g-tube to a vent/drain bag, to help drain Annie's stomach and get excess air out.  We then saw more blood coming out of her g-tube.

After vomiting, Annie started a coughing fit that lasted over an hour.  The doctor said we need to allow her to cough to help get the junk out and hopefully protect her lungs.  They did some deep suctioning with a tube inserted down her throat through her nose, but Annie continued coughing.  By 3:30am her cough was very weak and unproductive.  But her blood pressure was still good, temperature normal, and her oxygen sats were still around 95.  They gave her zofran, but she continued coughing, gagging, and vomiting the rest of the morning until about 5:30am when she finally calmed down and fell asleep.  

After talking to the doctors this morning, they have decided to start Annie on a more gentle formula, Neokate 1+ at a rate of only 10cc/hr.  Today they are also changing Annie's IV fluids to complete TPN (total parenteral nutrition) to help get proteins and nutrients in her since she can't keep down formula.  Her IV is getting old, so she'll get a new regular IV this morning to start the TPN in.  If she continues to not keep formula in her tummy today, they'll start a PICC line tonight for her to continue receiving TPN. Her stool this morning showed lots of white blood cells again indicating lots of inflammation like we've known since September 7th..  Her urine culture from yesterday is negative so far, but they will continue to watch it. 

Annie started having seizures this morning, and just had a grand mal seizure, so we are continuing to watch her and monitor her oxygen sats and vitals while we wait to hear from the doctors.  She also received a dose of ativan.  Annie is continuing to have small moments when she is happy and smiling and giggling.  Even this is so unusual for her.  All I can think is that she is seeing all the angels that I know are watching over her.  Please continue to keep her in your prayers, and the doctors too, that they might be able to find some answers and get her the best treatment.

Molly and Lexie have been sorely missing us and craving attention, so we brought them to the hospital this morning to visit Annie and to have us all be together for a short while.  They seem to love the cable TV shows that we don't get at home.

Here's Annie smiling just a few minutes before her grand mal seizure.

Brainstorming With the Doctor

I felt a little encouraged after a good night last night.  Annie maintained feedings at a rate of 40cc/hr for most of the night without vomiting.  Her blood pressures stayed good too.  She continued to have loose stools, but the nurses said they could detect distinct urine in the diapers as well.  The nurses changed her pillow pad every 2 hours because it would become saturated with her secretions, but she kept her CPAP on all night.

I got Annie up in her chair this morning because she was sounding so junky.  Then she threw up right before she got her meds.  The pediatrician came in and talked with me for quite a while.  We reviewed everything that has happened the last 11 weeks and brainstormed together.  Since Annie is not dry heaving or retching with the vancomycin when's she's only on IV, we're led to believe that she really isn't having a reaction to the drug, but instead her stomach just isn't tolerating food because of the colitis.

So this morning we knocked her feeds back down to 20cc/hr and are keeping her IV at 30cc/hr.  He'll talk to GI and see if they think Peptamin (a gentler and more easily digested formula) might help her tolerate her feeds while she still has the colitis.  The pediatrician will also consult with GI and ID (infectious diseases) to decide when a colonscopy should be done.  He thinks we might gain some useful information from a scope, but also realizes that it will set Annie back in terms of her feeds.  So hopefully we'll get a decision on that today or tomorrow.

Annie's calprotectin level (indication of colon inflammation) is still incredibly high--over 2500, which it has been ever since September 7th. So that's one reason they are starting to consider doing a colonoscopy.  The swelling in her feet, hands, and face is about the same and will be until she starts keeping more formula down.  Annie did have one small minor seizure last night before bedtime, but it's nothing I'm concerned about since a few seizures a week are very normal for her.  We'll just continue to watch her--another reason to get the vomiting to stop so she can absorb her seizure meds.

The good news is that her urine culture is still negative, as well as her blood culture.  And her last blood draw showed no increase in white blood cells.  Her blood pressure continues to be good and her temperature is staying normal.  Today will be just another day of waiting and watching.  Today is day 3 of being off the cipro, so hopefully today or tomorrow we might start seeing some improvements--fingers crossed!

She must have been having good dreams last night, because I caught her smiling in her sleep!

Just Waiting...

Today has been a rather uneventful day.  Annie got some Zofran before starting her feeds up again around noon.  She tolerated her feeding well (at a rate of 40cc/hr) until 2:30 when she got her vancomycin.  We're starting to think she just can't tolerate vancomycin anymore for some reason.  We paused her feed for a while then started her back up again and she did just fine the rest of the afternoon until 8:30pm. But this time she threw up BEFORE she got her meds.  We put her current feeding on hold, but we're not sure what the plan is for future feedings at this point.

Annie's swelling is about the same today.  Her blood pressure continues to be good without IV boluses.  She hasn't been as perky today, but she has gotten by on a lot fewer pain meds.  I learned today that I like having her catheterized so I can keep tabs on her urine.  I really liked being able to monitor volume and color yesterday and now with the catheter out I'm curious as to whether she's even urinating at all.  It's so hard to tell when her diapers have so much watery diarrhea.

Molly, Lexie, and Justin stopped by this evening after dinner.  Molly said she really wanted to come to the hospital today.  I don't know if it was to see Annie, me, or just to play with the toys and watch cable TV shows.  Having them here was fun--we haven't been together as a family much so we enjoy the short times we do get.  Molly started crying when it was time for her to go home.  I promised her that tomorrow night (when it's Justin's shift at the hospital) she and I will have a movie party at home--if I can stay awake through a movie!  Lexie seems to be having an easier time than Molly.  My parents will be getting in to town on Sunday, so hopefully that will provide a little more consistency in their days.

I wish I had more good news to report tonight, but this is just going to be a long, slow recovery.  I worry about all sorts of complications that might arise, but then try to remind myself that I just need to take one day, one hour, at a time, and be so incredibly grateful for how well Annie IS doing.  We appreciate everyone's continued prayers for her.  It's comforting to know that so many people are praying and thinking of her.

Day 79 With C-diff. Day 4 in the Hospital

We were encouraged yesterday afternoon that Annie seemed to be tolerating her half-strength feedings at a rate of 40cc/hr and even later at 60cc/hr, but she vomited last night shortly after they increased her rate to 80cc/hr.  They decreased the rate back down to 60cc/hr for her overnight feedings and seemed to do ok until she vomited again this morning.  So feeds are on hold until noon, at which point we'll try a full-strength feed at a rate of 40cc/hr.  They plan to give her a dose of Zofran to help with the vomiting, so we'll see how it goes later today.

Annie got a sponge bath this morning after she threw up, and even got her hair washed.  They weighed her and she's now up to 50 lbs, but we know that's all water weight, especially since she continues to have moderate swelling.  They also removed her catheter since it's putting her at a higher risk of developing a UTI.  Her urine continues to be amber colored, but they say it will just take some time to become more clear.  

Her chest x-ray from yesterday was clear and her kidney functions are still looking normal from her blood work.  Her UA did show 6-8 white blood cells so they'll continue to monitor for a UTI and watch her urine culture.  Putting Annie on antibiotics for a UTI would dramatically affect her c-diff treatment, so hopefully nothing develops.  If so, they would consider doing an antibiotic bladder wash.

They are continuing to take blood every 12-24 hours and so far her labs are all normal.  We still are waiting to hear about her stool sample test results, particularly her calprotectin level showing her amount of colon inflammation. She is still having about 6 episodes of watery diarrhea a day.  Infectious diseases has said that they don't expect to see an improvement in her diarrhea until she's been off her cipro for 3-4 days.  Yesterday was her first day off cipro, so no one seems concerned that she still has bad diarrhea.  But hopefully by Saturday or Sunday we'll start to see fewer episodes of diarrhea.

(Don't let these pictures deceive you.  Annie isn't sitting around all day grinning at us!  But when she does start to smile, we definitely grab the camera quickly!)

  Yesterday afternoon, playing with her beads.

 Yesterday evening:

All clean after her sponge bath this morning:

A Slightly Better Day

Today ended up being a relatively good day for Annie.  She had a lot of pain first thing this morning even after taking her regular pain meds.  I finally decided to try getting her up in her wheelchair to see if that would make her more comfortable.  She immediately stopped crying!  She stayed in her chair for 3 hours this morning playing with her mardi gras beads, watching TV and cat napping.  She had a few moments of pain, but having me scratch her head seemed to help her relax until more pain meds started working.

With her foley catheter in, they took urine for a UA, as well as some later for a culture.  She is still catheterized now, and the urologist just visited and told us she needs to get the catheter removed, ideally tomorrow or Friday at the latest since the catheter is putting her at such a high risk of a UTI.  Annie continued to have rather low urine out-put today, but at least she was putting out something.  It was still rather dark--similar to the amber color of sweet tea.  They are continuing to monitor that, but are telling us it's just because she was SO extremely dehydrated.  (Again, I'm SO angry at the ER doctor!)  She got more blood work done this morning and so far her labs are all coming back normal. I'm surprised that the urine is still so dark and there's so little of it after 3 days on IV fluids, but we're encouraged that her kidney functions all seem to come back normal..

Her swelling dramatically increased this morning to the point that her right eye was swollen shut, but tonight the swelling has gone down--not completely, but it has improved quite a bit.  Around noon the pediatrician, gastroenterologist, and infectious diseases doctor decided to get a g-tube feeding started.  They think that things might improve if we get her gut working again.  The theory is also that once she starts getting more protein in her from her formula that the swelling will go down--which it has a little already.  We expected more diarrhea with her eating now, and we definitely got it!  So they'll continue to monitor her fluids closely as she's having heavier diarrhea.  So Annie is receiving half strength formula (diluted 50/50 nutren jr. with fiber and water) at a slower rate than her normal feeds.  So far she has been tolerating it fine and hasn't thrown up at all, so we'll keep our fingers crossed.  If she vomits, they will stop all feedings again.

This afternoon Annie cried for a solid hour, but then took a nice solid nap.  They did a chest x-ray to monitor for pneumonia--haven't heard back the results, but usually no news is good news.  This afternoon they also drew more blood for a blood culture that will be a more thorough check of her systems.  This will also help to see if she's becoming septic at all.  Hopefully tomorrow we will also get her stool sample results back to find out if her calprotectin (amount of colon inflammation) is still really high.  I suspect it is simply because she's still having heavy diarrhea and is still in quite a bit of pain and needing the pain meds every 3 hours around the clock.

Now that she's off the ativan, Annie perked up a little more today.  She was actually smiling for a few minutes while playing with her beads in her chair.  (Pictures to come tomorrow.) She was awake MUCH more than yesterday and seemed to have a bit more energy.  So far she has still not had any seizures.

Earlier today her blood pressure was still hanging out around the 70s/40s, but after talking to Justin tonight (since it's his turn for the night shift) he said they just took her blood pressure and got 97/65!!!  Wahoo!  And that's WITHOUT having any IV boluses today!  That is a huge relief and a good sign that her body is starting to get a little better hydrated.


So in a nutshell, she's tolerating diluted g-tube feedings, has increased diarrhea, decreased swelling, better blood pressure, still low urine out-put and dark urine, is continuing maintenance IV fluids, flagyl by IV, vancomycin via g-tube, and florastor via g-tube, and no more cipro. Tomorrow we should learn her calprotectin level and get preliminary results from her blood culture. 

Two highlights of the day today were having some visitors.  My best friend stopped by today with her little boy and brought Annie a balloon.  Annie got the strings twisted up in her hand and had a fun time playing with the balloon and moving her hand to make it "bounce" up and down.  It was nice to break up the loneliness and isolation of the day and have a good friend to talk to.

Then after school three of Annie's teachers (her special education teacher, regular 3rd grade teacher, and one of her therapists) came to visit.  As soon as they started talking to her, Annie immediately gave them a huge grin!  She basked in their attention for a while, then would go back to watching her TV show, and then would look back at her teachers and smile!  She did that several times.  Their visit was definitely the highlight of her day!  I'm so grateful and feel so blessed to have such wonderful teachers for Annie, who are so kind and thoughtful enough to come visit her in the hospital; all whom Annie obviously adores.  They brought a ton of cards made by her 3rd grade class.  It was so nice to know how much Annie is missed and be reminded of how much she is loved at school--by her teachers and her peers!  I know she misses all her teachers and friends at school.

Today had some encouraging aspects to it, but we still worry about how all of this is going to get resolved, so please continue to keep Annie in your prayers and pray that the doctors will be inspired to know what tests to run and how to best treat her.  We appreciate everyone's willingness to help.  We are blessed to have such great friends.

A Break from the Bed

Annie actually finally stopped crying this morning once I got her up in her chair.  The swelling is continuing, so they are not giving her any more IV boluses, but will increase her maintenance IV rate slightly instead to help get her blood pressure up.  This little girl is my hero.

We've Got Urine!

After going another 24 hours without any evidence of urine they decided to insert a foley catheter this morning at 5:00am. They got nearly 200cc from her which is an excellent sign, but that's still a rather low volume considering all the IV fluids she's been receiving.  Her urine was also dark brown, so that's still a concern too.  They seem to think she's still trying to recover from such severe dehydration.  They did more blood work last night around 10:00pm and everything was normal, so they are not worried about her kidney functions at all. Having the catheter in is good to make sure she is emptying her bladder, but they are also concerned about leaving it in too long--having the catheter in with all her diarrhea puts her at a higher risk of developing a UTI, especially since she is not receiving any prophylactic antibiotics for that anymore.  They stopped her cipro yesterday and had planned to start bactrim prophylactically, but the doctors can't all agree on whether that is in her best interest or not.  The c-diff might be better treated if the bactrim is not in her system, but developing a UTI is yet another complication.

I pushed to have her ativan stopped since she hasn't been having any seizures and hasn't been vomiting, so her vigabatrin that she's been getting via g-tube should be starting to work.  But they still aren't sure if her body is absorbing the vigabatrin since she still has frequent diarrhea.  So we're continuing to monitor her seizures.  The ativan has been making Annie incredibly sleepy and along with the dehydration, is causing her blood pressure to drop to the 70s/40s.  She's been receiving bolus IVs about every 12-24 hours and her blood pressure comes up to normal range after those boluses.

As for pain, Annie actually never did receive any morphine yesterday.  They connected it to her IV line, but Justin had disconnected that line of tubing from Annie to the morphine syringe when he got her in her chair for a while yesterday.  Annie has continued to receive acetaminophen and ibuprofen alternating every 3 hours.  But no one has to watch the clock for those meds--Annie lets us know when they have worn off and it breaks my heart to feel so helpless for 40 minutes until the meds start working again.

Annie has started to get some swelling, mostly in her face, hands, and feet, but they seem to think that's a natural side effect of the diarrhea.  She's not keeping the natural salts and proteins in her body that would allow her blood to maintain the fluid, so a lot of the fluid is going into her tissues.  It's something they are monitoring, but don't seem too concerned about right now.

Annie is still pretty sedated.  She did open her eyes to just a small slit this morning when she was crying.  I tried to let her see me and talk to her, but I'm still not sure she knows I'm here.  Hopefully the ativan can get out of her system today and we'll see her perk up just a bit. 

Extreme Dehydration

After 24 hours on IV fluids, Annie had still not had a wet diaper this morning. So they did a sonogram of her bladder which showed she only had 90 cc (about 3 oz) of urine in there! The doctors have said she is SO extremely dehydrated! So they immediately gave her another huge bolus of IV fluids (in addition to her continual drip). As of now, at 7:00pm, she still hasn't urinated. I just want to go back to the ER doctor we saw Wednesday night and scream at him! I knew she was dehydrated that night and that's why I took her to the ER--even under the pediatrician's orders! I just hope we NEVER get that doctor in the ER again. We do plan to write a letter to the hospital explaining his refusal to treat Annie, especially when she was/is SO dehydrated! Arggg!

Anyway, on a happier note, I flew home to Omaha today and feel much better now that I'm with Annie. Justin surprised me at the beginning of September with a trip to Utah to visit my family. He realized how stressed I'd been lately with everything and decided I deserved a break. I was scheduled to be gone from Oct. 15th through the 23rd, but we clearly had no idea how terrible the timing would be. Once I got to Utah on Friday, I talked to Justin every couple hours for updates on Annie. Then when she was finally admitted, I knew I really needed to get home. So I cut my trip short by 5 days and I flew home today. Now I get to have my shift at the hospital with Annie and can feel a little more helpful and reassured.

Annie's been asleep the few hours I've been with her, so she doesn't even know I'm here yet, but I'm grateful that she's resting now. She's been having a lot more pain today. Yesterday they were giving her acetaminophen and ibuprofen for pain, but today they had to start morphine. Justin and the nurse said that she hasn't opened her eyes all day. She's had moments when she's been awake and crying in pain, but has continued to keep her eyes closed. It breaks my heart to see her like this.

Annie is continuing to receive ativan by IV for seizures so that's partially why she's so drowsy, but she's also probably feeling extremely weak since she's not getting any food. She's still just on IV fluids and we're not quite sure what the plan is for starting to feed her again.

She's also still getting flagyl by IV and will receive that by IV until we eventually go home, then she'll continue to get flagyl via g-tube for a combined total of 14 days. They are also extending her vancomycin dose as well, but we aren't quite sure how long that will go. She's been on her second round of vacnomycin now for 12 days. (Flagyl and vancomycin are both antibiotics used to treat c-diff.)

The urologist has decided that she needs to finally stop the cipro. They know Annie will develop a UTI if she's not on any prophylactic antibiotics (since she's still having several episodes of diarrhea a day), so they are starting her on bactrim prophylactically. She's been resistant to that in the past, and has also experienced vomiting while on bactrim, so they will watch her closely for vomiting and for other signs of a UTI. The only other option the urologist gave us was to start doing daily on-going bladder washes which would involve us catheterizing her daily to wash out her bladder with gentamicin, an antibiotic rinse. So hopefully she'll respond well to the bactrim.

They took another stool sample this morning--her third since this started 11 weeks ago. They are continually interested in her calprotectin level which measures the amount of inflammation in her colon. Her calprotectin has been around 2500 before, so doctors are really hoping that after this culture it has gone down. We'll get the results in 3 days and if her calprotectin is still really high they'll do a colonoscopy to see if there are bigger issues going on. So, more waiting... I wish they could just do the colonoscopy now, but I guess I'm just not a very patient person. We worry about the terrible things that go along with such prolonged inflammation, but we're trying not to worry about that until we know for sure whether she has sustained permanent colon damage or not.

The pediatrician has said that Annie will be in the hospital for at least 4-5 more days if everything starts going really well. Call me pessimistic, but I'm guessing it will be longer than that. She's had these issues for 11 weeks now and I just don't think that everything is going to get resolved so quickly, but if they do, that would be wonderful. But they need to get her pain under control, start feeding her at some point, make sure she can tolerate regular feeds, make sure the diarrhea has stopped, and make sure the bactrim is going to protect her against UTIs, and get her off the ativan to make sure her regular seizure meds can keep her seizures controlled again. That's a lot to accomplish and she might have a long road ahead of her still. So please continue to keep her in your prayers. We are so grateful for the kindness of close friends--taking care of Molly while I was trying to get home from Utah, bringing meals and snacks, and all the kind and thoughtful notes we've received. Thank you so much!

Finally Admitted

Annie finally got admitted to Children's this morning. I wasn't surprised to hear that Annie has lost 6 pounds (she's down to 46 lbs now). The pediatrician ordered consultations with the neurologist, gastroenterologist, and infectious diseases. So far the neurologist has visited and has put Annie on IV ativan to help manage her seizures.

Infectious diseases has started her on IV flagyl to help treat the c-diff. They're continuing the vancomycin more aggressively and plan to keep her on it until she shows improvement. Infectious diseases says she needs to come off the cipro, but is unwilling to stop it until the urologist and pediatrician can meet and formulate a plan of treatment for when she gets a UTI. So hopefully she'll be able to stop the cipro tomorrow.

Annie is not receiving any feedings--just IV fluids now. We don't know what the plan is for starting to feed her again. We're still waiting for the GI to come discuss everything. But we're expecting them to order a colonoscopy and endoscopy.

So Annie will be in the hospital for several days, but at least now we know she's getting the care she needs and things will hopefully be looking up soon. We appreciate your continued prayers for her.

Adding Seizures to the Mix

Well, I last reported that I was amazed Annie wasn't having seizures since she was vomiting so much, so I'm sad to report now that the seizures have worsened dramatically the last few days. She is having a very difficult time keeping any of her meds down, so her myoclonic seizures have come and been lasting up to an hour each. She's required two doses of her emergency seizure drug (Diastat) in the last 24 hours. The last several days she has been very lethargic, had worsening diarrhea, increased vomiting, an increase in seizures, and quite a bit of pain. These are nearly all the same symptoms she had when two different doctors instructed us to go to the ER on two separate nights. Each of those nights, the ER would not treat her and told us to contact her doctors for treatment!

So a few days ago after returning from the ER the second time, our pediatrician decided to admit Annie to the hospital if things kept getting worse, and now with the high increase in seizures and still lots of vomiting and diarrhea and pain, we plan to have Annie admitted in the morning. Hopefully then they can do the colonoscopy and endoscopy, and get an immediate infectious diseases consultation. They'll get her on IV fluids and hopefully get her perked up a little more and help prevent her from loosing too much more weight. So please continue to keep Annie in your prayers. We have no idea what all the tests are going to show since her case of c-diff has developed into lots of symptoms not typical of c-diff. We appreciate everyone's continued prayers for her.

Second Trip to the ER--Still No Answers

I had so many ideas for the title of this post tonight: "Frustrations Mounting"... "Getting the Run-Around"... "Who Will Help My Daughter?!"... "Beware: Venting and Complaining Ahead"... Needless to say, we've had a rough night. I've waited all day for Annie to pass urine so when she still hadn't by about 6:30 tonight, we called the doctor's office. After describing her horrible night last night, her possible aspiration, and now her lack of urine today, in addition to continued vomiting even on pedialyte, not to mention the continuing diarrhea, they told us to take her to the ER. We know from past experience that dehydration warrants admission, so I packed a small bag and prepared to stay the night and all day tomorrow. I was honestly relieved and excited to finally go to the ER knowing that she would be admitted and we'd start resolving all these issues.

We arrived around 8:30pm and got to our room pretty quickly. They immediately ordered some blood work and a chest x-ray. (All the while Annie continued to dry heave.) By about 11:15pm the doctor came to tell me that Annie's blood work all looked good and showed no evidence of dehydration. Her chest x-ray showed that she did not have pneumonia despite her congestion and inability to clear her secretions and phlegm. He said he'd get our discharge papers and we'd be on our way.

I said, HOLD IT! And proceeded to ask all my questions about what in the heck we're supposed to do to help Annie! I said, "So we're just supposed to let her vomit all day for several more days, continuing to risk aspiration until we can see a doctor who can help us?!" And he actually said, yes! He said it's not harming her to be vomiting because her blood work shows she's still maintaining hydration, and if she was going to develop pneumonia she would have gotten it by now! I was stunned.

I continued to challenge everything he said, like why is she not urinating, and he said if fluid is coming up and out the top it won't be going out the end. Oh. My. Heck. If it's coming out the top it's obviously not getting absorbed! Anyway, I won't entertain you with all the other nice things I had to say to this doctor. His only advice was to talk to our GI and pediatrician more to get the c-diff under control. I flat out told him that the GI and pediatrician have now both referred us to the ER--two trips in just 6 days. He didn't care. By this point I wasn't surprised.

On the drive home I just wanted to shout "Who will help my daughter?!" I'm so sick of doctors passing us off to a different doctor just to have them pass us off to someone else! I'm tempted to remove her from all antibiotics like we anticipate the infectious disease doctors doing, but I know without her cipro she'll get a UTI and then we'll be in even worse shape. So again, I'll call the GI in the morning and demand that he do SOMETHING to help her until we can see infectious diseases. I guess I've lost track of time, because after looking at a calendar today, I realized this is actually the 10th week we've been dealing with this. Isn't that long enough?!

So for tonight we'll just pray that she doesn't aspirate and have another coughing fit. I'm not sure what to even feed her tomorrow since she's gone 24 hours now without any calories. She still vomits with the pedialyte, so I might mix in some nutren jr. tomorrow to get her strength back up--which will surely mean more vomit again tomorrow, which means no school again too, but the pedialyte makes her vomit anyway, so we might as well try for some calories.

I've realized today that one huge blessing I've been grateful for is that even with all this vomiting and being off schedule, Annie hasn't had any seizures. Normally this amount of vomiting means she can't keep her seizure meds down and her seizures start going crazy. I'm absolutely amazed that her seizures are still being controlled--yet another tender mercy.

Sorry for all the venting in this post. My patience is starting to wear thin. But to end on a happy note, let me share the highlight of my day, possibly even my week... We managed to take Annie to her parent-teacher conference today after school. She struggled to demonstrate her eye-gaze communication device and I knew she wasn't feeling well. We then sat and listened to her 3rd grade teacher, special ed teacher, and other therapists tell us about the wonderful things Annie has been doing at school. Her peers love doing buddy reading time with her and she's able to take her turn "reading" by using her communication switch. I loved hearing all about how great things are going in school and felt so sad that she's having to miss so much of that lately.

But then as we were about to leave, Annie starting giggling. Not just a small chuckle, but full out laughing and grinning ear to ear! She got laughing so hard at one point that she was even squinting her eyes closed as she laughed. All of us just stood there soaking in the beautiful sight and sound!

Annie is my absolute hero. She always will be. Although she has been struggling for 10 weeks now with issues that no one can seem to help her with, although her condition only seems to be worsening, she still manages to find joy and happiness, and share that joy with others. I continue to be humbled to think that I was chosen to be her mother. Many days I don't feel worthy. I am forever grateful that she is my daughter and that we have her celestial spirit in our home. I just need to better follow her own example of patience and faith.

New Concerns Added to the List

Last night Annie seemed to be rather content without any Lortab! So she went to bed without any pain meds, but was coughing quite a bit. Around 1:00am or so, she must have thrown up although neither Justin nor I heard it. What did wake us up was her persistent coughing. We went in to her room around 1:30am when her cough became so fast and repetitive that she was struggling to even catch her breath. Unfortunately, her cough was also so very weak that it wasn't productive enough to cough up any of the phlegm and congestion that was in her throat. We knew we needed to get her upright, so we quickly changed her diaper full of diarrhea and sat her up on the edge of her bed. She loaded her diaper again just after we sat her up, got her cleaned up again, and then I rocked her for over an hour trying to help her get her breathing under control.

I'm not sure if she completely aspirated in the night or not, but we're continuing to be concerned about her aspirating because of all the vomit and her inability to give a productive cough. Pneumonia is not something we need to add to her list of issues right now! We stopped her overnight feeding as soon as we got in her room at 1:30am and kept it turned off the rest of the night. This morning I decided to give her only pedialyte to see if she would tolerate it better and hopefully not vomit as much today.

So far she has tolerated the pedialyte a little bit better, but she has still had several episodes of retching and dry heaving. Also, as of so far today (it's now 1:30pm) she has not had any urine output. Which isn't too surprising given how much she vomited the last couple of days, but after being on pedialyte for over 6 hours, I was expecting at least a little output. She still continues to have a normal temperature.

I'm growing impatient with the lack of progress she has made being on so many meds for the last 9 weeks. Today I decided to google c-diff and see what other treatment options we might consider since the standard treatments just aren't working. Big mistake. I'm now even more concerned about Annie's health after reading about how fatal c-diff can be if left untreated. And how colon inflammation can be fatal or require surgery for a colostomy due to too much damage of the colon. Our GI has continually said he's concerned about her terrible amount of inflammation, yet he's in no hurry to try anything but a 14 day course of an antibiotic she's already tried! He's even mentioned that with so much inflammation like she has, there very well might be an underlying problem other than the c-diff. Why he keeps putting off wanting to discover that, I don't know.

So, now with the risk of aspiration pneumonia and dehydration upon us, if she isn't clearing her airway and urinating by later today, I'm hoping to finally be able to get her to the ER and admitted to the hospital. Then, ideally, we'll have immediate access to infectious disease doctors and she can have her colonoscopy and upper GI scope without making us wait several more weeks as currently planned.

Please continue to keep Annie in your prayers... that we can get into the doctors she needs, and that the doctors will be inspired to know what is wrong with her and how to best treat her. We appreciate everyone's love and support.

Sesame Street Saves the Day!

Rather than sending Annie to school today only to have them call me to come pick her up later, I decided to just keep her home today. I thought that maybe after she got her morning vomiting all done with she would be good to go to school late. Instead, she decided to have a fantastic morning, only vomiting up just a small amount of bile once. She watched Sesame Street this morning and giggled through almost the whole hour of it. I'm so grateful for those sweet moments. Her smiles and giggles make me so happy and make all the difficulties so much more bearable.

The afternoon was a little rougher. She saved all her vomiting for during her nap time and while in the car to pick Molly up from school. She has had moments of fussiness today, but no pain like before, thank goodness. We've learned to make sure she gets Lortab at bedtime, and plan to get up with her at least once around 2:00am to give her more Lortab and get her calmed down again. That seems to be working well enough to get us at least a few hours of uninterrupted sleep.

I finally was able to get in touch with all the doctors I've been trying to reach for the last 2 days. They all agree we need to see infectious diseases before we mess with her meds any more. So we have an appointment with ID next Tuesday. Hopefully things won't get any worse before then. We just pray that they'll be able to figure all of this out.

I just realized I never mentioned how her diarrhea is doing. It's still just as bad--up to her arm pits in the mornings. I guess after 9 weeks, and learning tricks to cleaning it up, it just doesn't seem like a big deal any more. It's crazy to think about what has become "normal" to us now!

More New Meds and a Trip to the ER

I know it's been a while since I posted any updates about Annie. So here's a little bit about what's happened since the last update on her. We finished the first round of vancomycin to treat her chronic diarrhea (going on 9 weeks now). The vancomycin seemed to make no improvement whatsoever, so we called the doctor when she finished the round and he said it could still take another week to see any results. So we waited for another week, still without any results. At that point our pediatrician finally decided to refer us to a GI doctor.

We met with the GI last Monday and he prescribed three new medications for Annie: another longer round of vancomycin, alinia, and florastor. We were eager to get her started on these, yet due to insurance issues, lack of drug availability, and prescription errors at the pharmacy, it took us 3 days of phone calls to sort out all the problems.

We finally were able to get her drugs on Thursday and started them that night. She tolerated everything fine until after her morning dose on Friday when the school called to tell me Annie had been vomiting all morning. I brought her home, and she had a great day, until the home health nurse gave Annie her meds Friday night. Again, Annie starting vomiting and dry heaving, this time bringing up blood. We called the GI thinking we better stop the alinia. He confirmed that we needed to stop the alinia and instructed us to get her to the emergency room. So Justin stayed home with Molly and Lexie while I headed to the ER with Annie at 10pm Friday night.

Fortunately, the ER wasn't busy--at least not compared to what we were used to in Austin--and we were able to see the doctor quickly. He confirmed what we had guessed--that she had simply torn the lining of her stomach from so much vomiting and retching. He also told us to stop the alinia which he informed us is a drug used to treat a parasite, not c-dif, so he doubted Annie would be benefiting from it anyway! He also taught us something about cipro that we'd never heard before. He told us that long-term use of cipro can gradually start to cause diarrhea. (Annie has been on cipro now for almost 18 months to prevent her chronic UTIs.) So at least we gained some new insights from the ER.

Annie still continued to vomit on Saturday quite a bit, and now today not so much, so we think the alinia is finally starting to get out of her system. However, Saturday night Annie slept horribly and was in a fair amount of pain that would come and go. Then after having her shower this morning she started crying and screaming in pain and was totally inconsolable. After holding and rocking her for 30 minutes, we finally gave her some Lortab. Her screaming gradually turned back into just an intense cry and then down to just a whimper. Her pain hasn't come back with such force so far but she has continued to be rather fussy and uncomfortable. We'll talk more with the GI doctor tomorrow and hopefully get an appointment set up with infectious diseases to try to sort out all these antibiotics and figure out really what's going on.

Please continue to keep her in your prayers. We are so grateful for all of our supportive family and friends and appreciate everyone's thoughts and prayers for Annie.