February 9, 2010

Shunt Revision Surgery # 3: Feb 7 - Feb 9, 2010

On Saturday, February 6th Annabelle started throwing up. Once at about 9:30 pm and then again several times during the night starting at 3:30 am. Unfortunately, because we have done this several times in the last 6 months there was no question in our minds that it was her shunt malfunctioning. Obviously, we were devastated but had no choice but to pack up and head to the hospital. This time a bit different though, I packed up and headed off to the hospital by myself. Branden stayed home with our two sleeping boys. I recall it vividly and it was a very scary feeling driving to Long Beach Memorial without Branden and knowing in my heart that I was driving Annabelle there to have surgery.

Because our neurosurgeon is so considerate he had already contacted the ER and let them know Annabelle and I were on our way. Thankfully, we were checked in within minutes, put into a room and then the procedures began. They did an complete shunt series - CT Scan, X-Rays, blood work and urinalysis. As expected the results indicated that her shunt was clogged - same issue as the two previous revisions. It also showed that she had another UTI (urinary tract infection).

It had been very strong all morning. Talking with the various doctors, specialist and technicians, holding Annabelle while she was poked, prodded and had a catheter inserted and even rocking her to sleep at one point. However, I finally lost it when the ER doctor said to me "ok, so as you expected, the shunt is not working. I just spoke with Dr. Javahery (this is her neurosurgeon) he will plan to do the surgery in a few hours". Uh, wait a minute, I need to catch my breath a bit. I was there alone and I knew I needed Branden there with me badly. Because of a a very unfortunate and heartbreaking family situation that happened the day before where my nephew Brent was seriously injured in a car accident (read here if interested in additional details) I was unable to contact my parents to ask for help. It as a very scary and lonely feeling. We rely very heavily on my mom for help with the boys. She knows their schedules, she knows their temperament and loves them unconditionally. I have no idea what we would do without her.

It's amazing though how you can feel so alone one moment and in an instant that all can change. My longtime girlfriend Rachel graciously took the boys all day so that Branden could come be with his girls at the hospital. I was so thankful to know that they were safe and happy - thank you for all of your help. The following day two other great friends took turns watching the boys so that Branden could be at the hospital for Annabelle's surgery. Thank you Cheryl and Becky!! Your help was invaluable and greatly appreciated! We also received several other very kind offers from friends to help out with the boys - thank you for those!

After more discussions with the neurosurgeon it was decided that he would wait 24 hours to do Annabelle's surgery. He wanted to allow her body some time to respond to the UTI antibiotics and see if by chance it would make any difference in her very bulging fontanel. Sadly, it not and the decision was to move forward with the VP shunt revision as soon as he could get an operating room. Now this is a hard thing to do at LB Memorial! It was a VERY long day of waiting. Poor Annabelle hadn't eaten since 7 pm on Sunday. I was allowed to feed her until 3 am but she started vomiting at 7 pm so her feeding were stopped early. She was hungry, cranky and uncomfortable. It was a very difficult day.

The stress was taking its toll on all of us

I took this picture because I was sad that she had finally grew hair over the last incision and now they were going to have to shave it off again - ugh!

She was finally taken back to the OR holding room at about 4:00 pm. We sat there for about 30 minutes waiting and answering questions. Handing her over for surgery is clearly the hardest thing I have ever had to do. My heart aches so badly and I am so full of fear each time. I hope some day it will get slightly easier. I know I won't be able to cry like I do in front of an older child. We kissed her and prayed that all would go well. I just found one of my Facebook posts from while I was waiting:

"still waiting for my baby girl to come out of surgery. I just want to snuggle her and kiss her sweet cheeks"

The doctor came out about an hour and a half later and let us know that all went well and that I would be able to see her soon. My heart stops and I am literally frozen in fear until the doctors says those words "all went well, she is fine". He knows now and tries to give me a big reassuring smile as quickly as he can when he sees me so that I can relax a bit and we can chat. She did have some bleeding which he said he was able to clean and take care of - scary, but normal I guess for this type of procedure.

It was a pretty good night. She slept from 11pm until about 5am which is better than any previous hospital stay. Because all seemed fine the Doctor was comfortable discharging us so that Annabelle could rest and recover at home. We were however told that is she gets another UTI before her birthday (August 29th) she will have to start cathing. I am not happy about this at all! I knew it was coming but I am really struggling to get my head around it.

Waiting to be discharged on Tuesday (2/9). We will all sleep and eat better at home.

This time they put Annabelle's IV in her foot. It was better for several reasons - her lack of feeling in her feet made the needle stick virtually painless and the location made it much more difficult for her to pull it out. The nurse wrapped it in a diaper to help keep it in properly. We thought it was a pretty ingenious idea. Her foot looked pretty fun though.

Our swollen little girl

Of course we are very grateful that Annabelle's surgeries have all gone so well. We know how blessed we are and that many people have it so much harder than we do but the truth is I am frustrated. I am frustrated that this darn shunt keeps getting clogged. I am frustrated that we have to take this precious time to be in the hospital away from the boys, I am frustrated that her physical development is interrupted so often and that her sweet body has to heal after each surgery. I try not to express my frustrations often as I don't want them to overshadow the great moments in my life but I don't want to suppress it either. I really want and need this shunt to work. I do not want to be back in surgery for a very long tome!

1 comment:

  1. Sweet little Annabelle. She's such a trooper. I'll pray for no UTI's!