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.