So, yesterday I called Dr. Silberstein's office and was told that since his schedule was full, we should go to the ER at Strong to have a CT scan. We grabbed lunch at McDonalds on the way and got to the ER a little after noon. The first thing done was a shunt series of x-rays. That was a real waste of radioactive exposure. Nothing showed . . . and I mean NOTHING. On the x-ray there was NO SIGN of a shunt. However, you can see the scar, feel the tubing . . .etc., etc.
So, a little while later the chief neurosurgery resident came in to see Sumana and said he wanted to see a CT scan (surprise, surprise!!). I guess that showed enlarged ventricles in her brain (not a good thing) and it was evident that the shunt was not working. You may remember, this shunt was placed in 1999 in India and the last revision was in 2000. So, no one in the US knew what kind of shunt she had and there were no records from India.
After consulting with Dr. Silberstein, he dropped the bomb. He said that though there wasn't a lot of change in the CT scan from her past baseline CT, they didn't like the symptoms she was presenting: blurred and double vision, headached, loss of balance, etc. I guess Dr. Silberstein asked the resident if he had any plans that evening, because he didn't and he'd like to put a new shunt in.
What a shock! Poor Sumana teared up right away. She acted like she had the rug pulled out from under her (me, too, by the way!) They called the OR and told us she'd be going into surgery between 7 and 8. They planned to put a brand new shunt in the LEFT side of her brain, totally ignoring the dysfunctional one.
That's when the flurry of phone and texts took off. I had texting ability in the ER, but no phone. I had to contact Jade and the other kids and poor Greig in Princeton, NJ. He took off immediately to come be with his little girl. We also had no clothes or toiletries for our sudden hospital stay, so I had all kinds of people helping with that, too.
Anyway, she was taken to surgery around 8 pm and the doctor came to see me just before 10 pm. The surgery went really well and he put in a "Delta 1.5" shunt. (Don't you love the technical jargon . . .hey, dad . . . I've got a Delta 1.5!!) Because we had had that trip to McDonalds, they had to use a different anesthesia. Before going to surgery Sumana HAD to have an IV put in and blood taken (in addition to the blood draw she had on Tuesday). Thankfully, the numbing cream, warm packs and patient nurses worked and they were able to place an IV after 'only' four times. Also, Sumana was upset about not having Rocky, her stuffed puppy. Thankfully the nurses at Strong are very persistant and resourceful. They managed to scrounge up a beautiful black Beanie Baby to stand in until Rocky arrived.
So, my parents had been in Grove City, PA when all this excitement happened around 4 pm. They were supposed to spend the night in Erie before coming home after 2months on the road. However, just as Sumana was coming out of surgery, I called them again and found out that they were in Henrietta . . . 15 minutes away!! Also, Greig showed up just as Sumana was getting settled in the PICU. (Incidentally, a couple hours earlier my Aunt Bonnie and Uncle Rich had delivered our necessities and ROCKY! So, when she woke up and had Daddy AND Rocky . . .she was a happy camper).
Because it was a major neurosurgery, the nurses had to check Sumana EVERY hour! UGH! not much sleeping went on . . . but lots of good Sumana stories. She didn't vomit after surgery (which she ALWAYS does) and she woke up really thoroughly, so she was very entertaining throughout the night. At just before 4 am, the nurse asked if Sumana would like to have the lights turned down . . . "I'm not a 3:50 kind of person" (translated: Yes, nurse. Turn them out and let me sleep!)
By morning she was not as perky and had more pain. However, she was able to eat breakfast and visit with Papa and Nana who came over at 8am. Unfortunately, she became nauseous after eating and lost her breakfast. She rebounded well, though, and wanted to be wheeled down to the play deck area to pick out some books to look at. By that time she was walking (with help) to the bathroom and trying to sit up for 30 minute periods.
Since that time she has kept her lunch down and is tolerating the pain on JUST Tylenol. (She HATES the taste of the codeine and would rather live with a pain level of 4 than have to take the stuff!) Oh, yeh. Before we went to surgery she said, "I just want to get this over with!!!" LOL!! What a trooper!
So, the other surprising thing is that Dr. Silberstein said he doesn't see any reason why Sumana won't be ready for her next surgery in 2 weeks! Can you believe it??!! As things stand this afternoon, Greig is going home to get some sleep and will go back to NJ for 2-3 days. Sumana should be released sometime tomorrow. Any adverse effects are supposed to surface in the longterm, so no complications are expected at this early date.
More good news: Sumana's former PT, Miss Kristen visited today AND she got to play Medical Bingo with a bunch of other patients. She really wants to hang around the hospital til tomorrow afternoon because they're letting kids choose costumes in the morning and then having an all out trick or treat event up and down the hall of offices on the 4th floor. What a riot!! They really do try their best to make the most of kid's hospital stay.
Thank you for your prayers. I'm just amazed at how everything has gone and the safety God has provided for travel and health. By the way, Sumana's vision was back to normal this morning (another confirmation that this was a good and timely thing to do!!)