July 31, 2010

Moving in the right direction now

Ok, so I guess I need to make a public confession about Ditropan and this blog is as about as public as I get :-) It looks as if the Ditropan may not have been the cause of Annabelle's extreme high temperature . Yes, the high dose (2ml 3x a day) we were originally prescribed definitely caused some scary side effects and an "overheated" body temperature but as we now know the Ditropan was not completely to blame.

When Annabelle (finally) woke yesterday morning (the day of the birthday redo!) she was groggy, puffy eyed, super hot (although dressed only in her diaper) and just plain old not feeling well. Since the Ditropan had been out of her system now for about 20 hours we were pretty confident her behavior was now due to something else. Of course when you have a child with SB & hydrocephalus you immediately think it's the shunt or possibly a UTI. Unfortunately, she continued to not feel well and seemed to be getting worse. Her temp was rising, she wouldn't eat any solid foods and she vomited up her antibiotics again - ugh! All the while her fontanel was fluctuating between full to hard - it was never really emptying in my opinion. We are so blessed to be able to communicate so well with both Annabelle's Pediatrician and Neurosurgeon. After several rounds of calls and updates, the decision was to bring her into the ER yet again to get completely checked out.

We were given another "fast pass" at the ER because Dr. Javahery (Neurosurgeon) had called ahead for us - I love that man! All signs pointed to a shunt malfunction as her head was super bulgy when we arrived but her temp had also rose to over 103 again. Thankfully, they gave her a Tylenol suppository immediately and that helped quickly to get her temperature down. After a series of tests - same ones we did last Thursday, it was determined that the shunt appears to be working but that she has a pretty bad UTI. Her white blood cell count last week was 25 and this week it was over 700 so it really skyrocketed this week. Because this as become a chronic issue the doctors all discussed the best plan of action for Annabelle.

So, once again her is the NEW plan :-)

She received a shot of antibiotics at the hospital
She is going to go to the pediatrician this morning and get another shot of antibiotics
She was sent home with an RX for a 10 days of an oral antibiotic

We restarted Ditropan yesterday before we left the ER. The new dose is 1.4 2 x per day and the pediatrician will be working with the Urologist and the clinic team to come in an agreement on the lower dose.

We are still cathing her 4 x per day and I'm happy to report that I had success the 2 times I did it yesterday.

I feel so much better knowing that she will so be feeling better soon. So, needless to say, birthday attempt # 2 didn't happen yesterday but the good thing is Annabelle doesn't have a calendar so she has no idea this was her birthday week. Everything is ready and waiting for her once she is ready to celebrate!

I am CONFIDENT that these boring text/no picture updates are a thing of the past. I am SO ready for some cuteness.

1 comment:

  1. Oh sweet momma. Glad you guys have a new plan and I hope, hope HOPE this one is the trick. :) Sweet little Belle we hope you are feeling well enough for a birthday soon cause we are ready for CUTENESS TOO! :) Much love!