In the Hospital Waiting for Answers...

I've not been very good this week with keeping updates posted on Annie, but by now I think most of our friends and family are aware of what has been going on with Annie this week.  But here's a run-down of what's been happening if you weren't aware, or if you are interested in more details.

Last Tuesday Annie was sent home from school early, which is normal since her spinal fusion.  She gets uncomfortable sitting in her chair for long periods of time still which is still expected at this point of recovery.  However, on Tuesday she was sent home because she was having several seizures all morning long, some lasting 15-20 minutes.  I didn't think that was too unusual because earlier, Justin and I had just been talking about how few seizures Annie has had recently.  It seemed like she was due for some.  I brought her home and let her rest in bed the rest of the day.

Wednesday morning we thought she'd be doing better and planned to send her to school, but when we went to get her up, she felt really hot.  Turned out that she had a fever over 103, which explained why she had so many seizures the day before. We had noticed that her urine was a little smelly earlier in the week, so those two symptoms together led us to believe she had a UTI and I took her in to the pediatrician that morning.

The urine analysis showed increased white blood cells, so they started her on suprax while we waited for the culture results to come back in a couple days, to verify susceptibility.  I was concerned that there was more going on than just a UTI because although Annie gets lots of UTIs, she very rarely gets a fever with them, and when she does, it's just a low-grade fever.  We were nervous about infection in the rods in her back, but since that can't be easily tested and they knew she had a UTI, the plan was to treat the UTI and everyone suspected it was the source of the high fevers, yet I knew that just couldn't be right and felt strongly that something else was probably wrong.

On Thursday, Annie's fevers continued to soar and got up to 104.2.  We knew the antibiotics for her UTI would take a couple days to take affect and bring down her temps, so we continued to give her tylenol and motrin around the clock to keep the fevers and seizures down, but I still knew that a UTI shouldn't cause such high temps.  We suspected it had developed to a kidney infection and figured we needed to give the antibiotics a bit longer to work.  Annie also had decreased urine output, so we really pushed the fluids that day which seemed to really help.

Sick, sick girl with 104.2 temperature!

Friday was another day of waiting for the antibiotics to get in her system and become affective.  Nothing changed Friday during the day--just kept the tylenol and motrin going to keep her fevers down.  Our nurse came Friday night as usual for our date night and Annie seemed well enough for us to go out and get a break.  When we returned home, our nurse told us that Annie's breathing was a little unusual, but I figured she just needed her CPAP on.  The nurse left and I went to check on Annie and she was breathing really fast and shallowly and her whole body was trembling.  Her fevers still hadn't come down and I knew it was time to get her to the ER.

Annie and I got to the ER late Friday night around 11:00pm after a slow and snowy drive.  They immediately said they were going to admit her, diagnosing her with a UTI that had progressed into a kidney infection.  They did a urine culture and drew blood for a blood culture too.   Her white blood cell count was at 38,000.  They started her on IV antibiotics and and fluids, then Annie and I waited in the ER room until 4:30am when they finally got her admitted to the 5th floor.  Needless to say, it's impossible to sleep in a wooden rocking chair.  By 5:30am I was finally done updating doctors and nurses on the 5th floor and we attempted so sleep, but the nurse came in to say we needed to stop all g-tube feeds in preparation for a renal sonogram. And shortly after that Annie started having spasms.

Trying to rest in the ER.

I don't know why it's so strange to me, but it still always surprises me at how much nurses and doctors freak out when Annie has a seizure in the hospital!  They immediately ran to get the doctor and to contact the pharmacy for emergency meds.  Meanwhile, I was telling them that these seizures are perfectly normal and can last 15-20 minutes and it's just fine, but after just 5 minutes they felt like they had to intervene.  So she got Ativan which then made her sleep for the next several hours.  I, on the other hand, felt like they should be that hyper about her high fevers, instead of the seizures.

She continued Saturday morning with high fevers and seizures and went for her renal sonogram late in the morning.  To everyone's surprise, the renal sonogram showed no evidence of kidney infection at all!  Which is good, but it also means that the source of infection is unknown.  They then decided to get stool samples at their next chance to test for c-diff and markers for inflammation in her colon.  Annie's bowel habits have changed slightly over the last week or two, so maybe that is an indication of an ulcerative colitis flare-up or a c-diff infection, either of which might have been triggered by her spinal fusion surgery in December.

Saturday afternoon Annie started looking more pale.  They did a chest x-ray to look for pneumonia, an abdominal x-ray to look for bowel obstructions, and a respiratory viral panel to check for any kind of flu or other viral illness, all of which came back negative.  Later in the afternoon an orthopedist came in to examine Annie's back, and thought that it looked good with no sign of tenderness, so right now, they don't have any evidence that leads them to believe she has any infection in her back, but we are also still waiting for her blood culture to come back, which would give us more information about whether bacteria is traveling to her back.

Annie's original IV already went bad, so after 3 additional tries, they were finally successful in getting a new IV placed.  They also started her on vancomycin by IV, in addition to the rocephin they started Friday night, trying to cover their bases with these two broad-spectrum IV antibiotics.

Late Saturday night they were able to get a stool sample to check for c-diff, but we won't get results from that for about 3 days.  Annie's urine output decreased earlier Saturday and then stopped altogether, despite a large IV bolus, so in the middle of the night, they put in a foley catheter.  She also had more BMs which again might be an indicator of inflammation of her colon.

Sunday morning they did more blood work which showed her vancomycin could be increased.  Her white blood cell count increased from 38,000 to 42,000 and her hemoglobin dropped from 9.2 to 8.2 but that might be in part due to the increase in fluids she's received.  The CRP which measures inflammation in the body was the same as yesterday. We got her initial urine culture results from Friday night which were all normal too, so the antibiotics are treating her UTI, but not the unknown source of fever.

Starting to get swollen and puffy Sunday morning.

Sunday afternoon now, we just got back to the room after going for another abdominal sonogram, this time trying to look at her appendix.  They think there's a possibility of appendicitis or a ruptured appendix.  We mentioned that Annie hasn't been in a lot of pain--just fussy and uncomfortable at times, although earlier in the week she had been inconsolable for quite a length of time.  A ruptured appendix would no longer cause pain once ruptured but could cause some serious infection issues.  So we are waiting for results of the sonogram, however, the technician didn't seem to get a good view of the appendix, so they will most likely be doing a CT scan later today to look more at the appendix as well as her colon.

Annie perked up enough to play with her beads. She smiled big when she saw I had brought them for her!

The blood culture from Friday night is so far negative which is good, but they'll continue to watch that for 6 days. They don't plan to repeat her blood culture since she's on IV antibiotics. We continue to hold off on feedings or any TPN until we find out the state of her colon.  Fortunately, they were able to pull the foley out since her output had increased, so we continue to monitor that as well, and now she's just back to maintenance IV fluids.  Her bladder scan showed that she was dehydrated more than she was just retaining urine, so she should be voiding on her own now.  Her temps are back up to 101.8. They are relatively well controlled with motrin and tylenol, but when one starts to wears off, her temps soar back up.

So that's where we stand now.  I will post updates here more frequently now as we learn more. Thank you so much for all your thoughts and prayers.  We really appreciate everyone's kind words and prayers for Annie.