Go away strep, you are not welcome here!

Poor Cara is sick once again. The kiddo seems to get hit with something about every couple of months. This time, it's our good buddy, strep throat, once again. This time, it seems to have reared it's nasty, ugly head and knocked Cara out cold. She's been down & out for about 5 days now with no sign of improvement.

We ended up in the ER yesterday afternoon because Cara woke up with a large amount of swelling over her right eye (her shunt side) and she was pointing to her head along with lots of whining. Not wanting to blow this off, we packed up and headed to Children's Hospital. We were quickly assigned a room and had a neurosurgery resident in to examine Cara and talk with us. The concern, initially, was for inter cranial pressure due to Cara's low heart rate and high blood pressure in triage. The doctor ordered a rapid MRI (only takes 3 minutes to complete) to check on her ventricles which would insure that he shunt was working properly. Cara did really well with the MRI and we were soon back in our room awaiting the results. Her ER doctor come back after about 30 minutes of waiting for the MRI results to tell us that everything appeared to be fine and that, most likely, Cara is suffering from an allergic reaction to the antibiotics that were prescribed to her the previous day by our family practitioner.

She prescribed something called Cefdinir which was new to us since, in the past, Cara has always had Amoxicillin, which quickly did it's job and made her better. Her doctor's reasoning for trying the new drug as a good one, she didn't want Cara to build up an immunity to the Amoxicillin since she's had so many doses in the past 12 months (strep, ear infection, etc). However, it appears that the new drug didn't agree with Cara, thus causing the swelling and other symptoms.

The ER equipped us with an prescription for Amoxicillin (better to stick with what you know works and deal with the consequences later than switch to something that doesn't) which we quickly filled at the in-house Walgreen's and sent us home to be seen by the neurosurgery clinic next week. We are to watch for any signs that she is worsening or not getting any better despite the medication switch. A big thing that we are watching for is swelling along her shunt tract which runs from the top of her head, behind her ear and into her stomach. The doctor did say that it could take 72 hours for the Cefdinir to get out of her system, so we may have a long wait to see any improvement.

That said, it is so hard to sit here and watch Cara sleep and be so lifeless. She hasn't had any solid food since Monday evening and only drinks about 24oz of milk a day. She sleeps probably 20 out of 24 hours and if she is awake, she is tossing and turning, whining and just looking so uncomfortable. It just breaks my heart. I want nothing more than to have our usual Cara back. Even if that means the little terror who whips through our house like a tornado, leaving toy piles and other destruction in her wake. Right now, that would be a welcomed sight! Hopefully, by Monday, she will be back to her old self and all of this will just be a memory.

So, can I ask for positive thoughts, crossed fingers and prayers for Cara's speedy recovery? Goodness knows this little girl has been through enough! I really don't want the ER ward to become our second home, nor the pharmacy.

On a side note, we are going to look into a sulfur allergy for Cara. It seems that the Cefdinir has sulfur in it while Amoxicillin does not. Sulfur (sulfa, sulfate) is in so many things and would explain a prevalent skin "rash" that Cara seems to have. I have read that this is a very common allergy and some family members are even allergic so, who knows...maybe we solved the mystery of the eye swelling as well as the rash. I plan to bring this up to her neurosurgeon as well as our family practitioner.

"New Patient" Neurosurgery Visit

After our initial visit was canceled due to a bad spring blizzard, we were anticipating our rescheduled visit with Cara's new neurosurgeon today. The doctor that consulted with us and put in her shunt back in 2007 has pretty much retired from operating and has switched to another hospital. When we were up in neurosurgery last year to have Cara's shunt reset after a CT scan, we got to talking to our Physician's Assistant about finding another neurosurgeon to take over Cara's care. Knowing that we like to be able to ask questions and openly converse with our doctor, she recommended Dr. McNatt for Cara. I have to say that we immediately felt at ease with him--both Ben & I got a great vibe. He shook our hands and then Cara walked right up to him to shake his hand too! We had a great talk about Cara's progress as well as some concerns that we have. He pretty much reassured us that Cara is doing very well, all things considered. Her head circumference (51.3 cm) has stabilized and obviously, her shunt continues to do it's job. Unless something comes up in the meantime, we do not need to see him until a year from now! *knocks on wood* I have a feeling that this is the start of a great professional relationship.

Neurosurgery Update

Cara had her *gasp* 9 month surgical follow-up with her neurosurgeon on Wednesday. While incredibly brief (he was running 20 minutes late and we had another appointment to make), we learned that her shunt appeared to be functioning well, and that in the past 6 months, her head circumference has only grown about a 1/4" of an inch. While she should be "growing into" her large head, a little bit of growth is normal because, well, children grow. He was also pleased to hear of Cara's progress in therapy and wants her to keep up the good work. As long as she remains stable, we do not have to see him again until October! I hope that we, again, get to report that all is well.

I, of course, had other questions to ask of her neurosurgeon but 1) there just wasn't time and 2) I really didn't think that he would have the answers since they were not medical questions. I am waiting to hear back from his staff assistant about a shunt alert card and about the existence of hydrocephalus support groups in my area.

In other news, thanks to Gabriel's Life, I have met two other moms who have children with hydrocephalus and we are hoping to get together soon. One even lives in the same city as we do. It will be interesting to see what else we have in common. I am really looking forward to creating a network of friendship and support, for both Cara & I.