Tuesday, July 27, 2010

A Long Day at Riley

Our day at Riley yesterday was incredibly draining on all of us.  Our day started at 4:15 am.  As prep for the anesthesia, Sadie was only allowed clear liquids, and she was not interested in the diluted apple juice we offered her.  I was prepared for two hours of screaming during the car ride down, but she tolerated the lack of milk much better than I expected.  I was thankful that anesthesia put her to sleep with a mask before attempting to put in an IV--all of the chub kind of makes her a hard stick.  We were allowed to stay with her until she was asleep and we went back into recovery as soon as she was awake.  Things went smoothly with anesthesia and the MRI, but she did not wake up a happy camper.  At all.  After about 30 minutes she was allowed breast milk, which improved the situation, but she still wailed every time the nurse came in the room. 

Chris and I had just enough time to eat lunch before her second appointment.  We hit the cafeteria and headed to Dr. R's office for a urodynamics study.  A catheter was placed in Sadie's vesicostomy and another in her colostomy.  Contrast filled her bladder while the nurse took measurements.  Things seemed to be going well until the fluoroscopy image revealed that all of the contrast/urine did not empty.  We assumed it was still residual in her bladder, but the nurse was unable to remove it even with the catheter.  We were taken to an exam room and ultrasound images were taken, and a second nurse cathed her vesicostomy.  The images still showed urine.  Dr. R's suspicion was that the urine was collecting somewhere other than her bladder, and he was right.  A catheter inserted into her common channel produced 129 ml of urine.  Her bladder can hold about 40 ml, so she had about 3 times her bladder capacity sitting behind her bladder.  (Probably not too comfortable for poor Sadie.)  The urine was also very cloudy and immediately tested positive for infection, so she got a shot of Gentamycin and a prescription for Keflex until the culture comes back.

Sadie had long since lost her patience when Dr. R informed us we would need to start in-and-out cathing her at home.  The nurse came in to instruct us on the procedure.  I finally broke my silence and announced that I was an RN.  I think she was relieved to not have to instruct a "newbie" on such a delicate procedure at the end of her work day.  Dr. R also wanted more bloodwork, but we simply could not take any more pain being inflicted on our baby.  Twelve hours later, after caths, anesthesia, IV's, test after test, we finally headed home.  Sadie completely shut down.  She was so sound asleep the entire two hours home.  I don't think a freight train would have stirred her.

What we learned yesterday was that Sadie's syrinx is still present in her spine.   Dr. R will be following up with Dr. B, her neurosurgeon.  (We don't have all the MRI results yet.)  We are also assuming that, with the in-and-out caths, Sadie's bowel won't have the opportunity to absorb urine and her CO2 will improve.  Her bladder contractions are also strong, which is a good sign.  So, we are waiting on culture and MRI results at this point.  Sadie has more bloodwork and another ultrasound in a couple of weeks.

Thursday, July 15, 2010

New Surgery Date (Again)

The third time is the charm, right?

Our new surgery date for Sadie's PSARVUP is Oct. 19.  She will be admitted on Oct. 18.  Hopefully there won't be any more changes.

Tuesday, July 13, 2010

Steady Wins the Race

While Sadie is growing physically without difficulty, her developmental progress is starting to lag.  At seven months, she is not rolling or using her hands across the midline of her body.  These were concerns that I discussed at our developmental pediatrics appointment today, and Dr. D agreed that she needs more intervention.  We may finally be able to get First Steps involved for some at-home therapy.  She has plenty of time to catch up developmentally, so we're just plugging along and taking the little victories as we get them.   Otherwise, things are going great.  Besides her appointment, Sadie also had some bloodwork drawn.  I'm anxiously awaiting the results to see if her anemia has improved.  Sadie weighed in at an impressive 16 lb. 10 oz.!  She's still breastfeeding and has started to accept cereal and veggies.

In two weeks, Sadie will be having an MRI under general anesthesia.  Following that, she will have a urodynamics study and an appointment with the urologist.  We're pretty nervous about it, but even more nervous that we're down to just two months until surgery.

4H judging starts tomorrow for Elena, and unbelievably, we picked up her school supply list for the fall.  What happened to our summer?

On a sad note, I'm asking our family and friends to please pray for the Kaufman family.  Their baby, Gwenivere, was born prematurely at about 24 weeks (I think).  She had been at Riley for many weeks and had made it up to 4 lb., but sadly she developed pneumonia and passed away on Saturday.  Her daddy and I grew up in church together, and I know that his heart must be devastated.  I pray that they will take comfort knowing that she rests in Jesus' hands until they join her in heaven.