Tuesday, January 13, 2009

Sylvie is A-OK!

Thanks so much for all your concern and well wishes!

Yesterday's procedure went very well. We got to the hospital around 6:30am for our 7am appointment so we had to wait a bit before things got going. Poor Sylvie was irked that we refused to give her her morning milk & CIB and kept very slowly and deliberately saying/signing: "I...want...milk." as if we were maybe just having trouble understanding her request. Considering we've spent a great deal of time and effort on helping her to gain good communication skills, I was doing my best to let her know that we did in fact hear what she was saying but that she just wasn't allowed to have anything to eat or drink before the procedure because the sedation would make her nauseous. Her response?

"I...WANT...MILK!"

So Theron and I just did our best to distract her until the nurse came to escort us back to what would be Sylvie's recovery room. Once there, the nurse went over the specifics of the procedure and what to expect afterwards and asked if we had any questions. Then another nurse, Steve, came in. He informed us that he would be the nurse in the room with Sylvie during the procedure and also asked if we had any questions. (You gotta appreciate the fact that the doctors and nurses at CHB like to keep the parents informed!) Steve took our cell phone numbers so he could keep us updated on the status of the procedure. Finally, Sylvie was given an oral sedative that she did not at all care for and after a bit she grew drowsy. When she finally succumbed to the soporific, Steve gathered her from my arms and took her off for prepping.

Theron and I went down to the main floor to grab some much needed coffee and overpriced but delicious nibbles at Au Bon Pain. Since the cath lab waiting room had two big signs that stated NO FOOD or BEVERAGES, we hung out in the seating area by the big fish tank in the lobby to eat. To pass time and try and keep everyone updated on the situation we'd brought our laptops and made use of the hospital's wi-fi. Shortly thereafter we got a call from Steve saying that Sylvie was fully prepped and they were preparing to place the coil. Pretty fast work! We weren't sure if wi-fi was available in the cath lab waiting room so Theron remained in the lobby while I went back upstairs.

About 30-40 minutes later, Sylvies cardiologist Dr. Lang came into the waiting room and told me everything had gone splendidly and that Sylvie would be able to see her shortly. I went back downstairs to fetch Theron and when we got back upstairs, Sylvie was in the recovery room, completely zonked. Steve informed us that they'd had to give her another dose of sedative right at the end because she'd started to come around while they were removing the catheter and as a result she'd most likely be out for a while. She did sleep a great deal waking up occasionally for longer and longer periods. We started giving her water which didn't want to stay down at first. Karen, the nurse who cared for her during the recovery phase, gave her some anti nausea meds in her IV which helped.

Around 4:30pm Sylvie had an xray to ensure that the coil hadn't migrated and was staying put (it was fine). Then Dr. Mazwi, the cardiologist who had assisted Dr. Lang, was kind enough to show us some images--both still and video!--of Sylvie's procedure which was pretty neat to see. He also told us the repairs from her surgery in '07 looked perfect and that she wase unlikely to require any further surgical interventions. Yay!

Since both the xray and the puncture sites from the catheterization looked good we were free to take her home after a final dose of antibiotic and Tylenol. She got a little bit sick again in the car and after we got home. We were trying to gradually reintroduce her to just liquids but she began all but begging for real food: "Chip!"...Pizza? Pizza!"..."S'getti!"..."Lunch!"..."Chicken!" We started off giving her just some milk and CIB and she did throw it up after a bit but I think it was because she'd had a coughing fit and gagged more than because her stomach was still upset. We waited a little bit longer and gave her more milk. When that stayed down we gave her some goldfish crackers and then some beef broth and a little bit of white rice from the Chinese takeout we'd ordered for ourselves. Thankfully, there were no further upchucks and we all slept pretty well last night.

Sylvie seems perfectly fine today but per doctor's orders we're keeping her home from school until Thursday. Right now she's chowing down on chicken nuggets, mixed veg and grapes while singing her own particular version of "I've Been Working on the Railroad." All is pretty right with the world if you ask me!

Sunday, January 11, 2009

Second---and hopefully FINAL--heart procedure

Tomorrow morning, Sylvie will be having a follow up cardiac procedure to close off the PDA that was unsuccessfully ligated during her open heart surgery last year. Luckily, this procedure is much less invasive. A tiny stainless steel wire, or coil, will be placed in the PDA via a catheter threaded through the femoral artery and vein via a small incision in Sylvie's groin while she is under concious sedation instead of general anesthesia. We've been assured that Children's Hospital performs several of these procedures each day and that the risk associated is akin to having one's tonsils or appendix removed. In fact, it's considered an outpatient procedure in most cases and in all likelihood we'll be on our way home by late afternoon.

While we are not 100% relaxed and at ease with the situation by any means, we are far less freaked out than we were last time. However, any and all thoughts/prayers/healing energies etc you'd care to send our girl's way tomorrow are very much appreciated!

Saturday, January 10, 2009

Oops

Hey! Guess it's been a while since I posted, huh? I never meant to quit the blog but I just never seemed to have the time to sit down and write things. I was sure that I'd pick it up again after Sylvie started school but obviously that hasn't exactly been the case. Part of the problem was that after so much time had passed I felt like I was required to write a hugely epic post about all that had occurred and I even started it back in Sept but, well...that didn't get finished. So I've decided to start again with little bits and pieces from each day as it occurs.

Today's bit has to do with Sylvie's ever increasing ability to communicate verbally which has really come quite a long way:

In the midst of watching an Elmo's World DVD, Sylvie jumped down from the couch, turned to me and exclaimed, "Chicken! Pizza! Pnuhburr!*Apple!" Translation: "Time for dinner mom!"

*peanut butter