New Record

I haven't found the post that I'm thinking of yet, but I think our quickest surgery was 12 or 13 hours door to door. Yesterday we made it down to 10 hours! Sumana's surgery didn't start til almost 2pm, but Dr. Sanders was out to give us a report by 3:40. It was a standard expansion, no new rods needed. The only issue was anesthesia. As always, they had a hard time finding an IV site. We had hoped to get the IV put in before surgery because it had worked out so well for her shunt surgery. (ie: she didn't throw up!) But after 2 hours of prepration, they didn't see a good site and said she needed to use the mask. The good news, though, is that she still didn't throw up! She laid almost flat for her whole recovery, eating and drinking slowly. When she was ready she sat up and got dressed. Then we went home!

Last night was really long. Sumana had to get up almost every hour to go to the bathroom! UGH!! The pain seemed to be more than usual last night, but this morning she seems to have turned the corner. She's been playing on the computer this morning and has gone 5 hours without the serious pain meds . . . just ibuprofen. We appreciate your continued prayers!

Late Monday Surgery . . . .

UGHHHH!!! Poor Sumana! Her surgery is scheduled for 12:30 Monday. What a long time to go without food!! AND . . . it'll be tough to get out of post-op before they close at 8. Sumana doesn't have a PICU room reserved, so I'm determined to go home. I want her to be ready and stable, but I know I do an awful lot of work on a 'regular floor room'. I'd rather be doing an awful lot of work under my own roof!

Sumana has six (count 'em SIX!) girls over for her birthday. The actual day is 10 days away, but we thought she'd enjoy it more now before all the trauma to her back. I'll try to post pictures tomorrow. I hope we can all get some sleep! They're still pretty chatty and it's almost 11pm!!

Fun Visit and busy week ahead

We found out last week that my Aunt Ruth had been moved to hospice care and had requested to see Sumana. So, this morning we headed over to Hospeace House outside of Naples. What a lovely spot (even in a snow squall!!!) Aunt Ruth was so pleased (and surprised to see Sumana. It brought tears to her eyes. It really was precious! We had a wonderful visit and got to hear all sorts of stories. I always enjoy visiting Aunt Ruth . . . but the visits are always very far apart. Aunt Ruth was very alert and talkative . . . very much herself! Sumana flashed her beautiful smile over and over.

This week Sumana has PT twice, gets her stitches out on Tuesday and has her birthday party on Friday. Poor Andrew gets all 4 wisdom teeth out on Tuesday. Greig goes to Cold Springs (near Newburgh, NY) on Monday and comes home next Sunday. Sumana's next VEPTR surgery is Monday the 15th. The good news (sort of) is that this is my first week not working at the library, so I should be a little less pressed for time. Whew! I'm looking forward to being able to catch my breath.

By the way, Sumana's friend, Giana, has her next VEPTR surgery with Dr. Sanders on this Monday at 7:30 am. I know her family would really appreciate our prayers for her and the surgery. Thank you!

OK . . . so there are 34

Wow, I used to be such an exaggerator. Huh . . . . I got to counting Sumana's stitches today . . . 34 total in the 3 sites. So, more than I thought . . . but I'm still impressed with how much hair Dr. Silberstein was able to save. He's a surgeon who knows about girls and their hair!!

Sumana still has had quite a bit of pain today, but the alternating Ibuprofen and Tylenol has worked pretty well. She is VERY weak, so I had her doing some of her leg exercises and 15 minutes of Wii balance today. I guess that's my biggest concern now for her upcoming surgery. We need to help her get her strength back so she can 'go under' yet again. I actually may agree to spend a night in the hospital this time . . . though I'm still trying to catch up MY sleep from our latest adventure.

Sumana will get to stay home with Daddy on Monday and then she gets her re-eval at PT on Tuesday so she can resume her work with Miss Becca on Thursday. She wants to at least go to Sunday School tomorrow, so I guess we'll try. I'm pretty nervous about germs, but I guess we'll go with the flow. If I see or hear anything suspiciously germy, we'll be out of there. (However, Sumana did agree to wearing a face mask if she has to. I already feel bad about her having to cover her shaved head, though . . . I don't want to turn her into more of a spectacle with a mask).

Quick explanation

The reason Sumana had surgery was because her shunt had stopped working. As a result of being born with spina bifida, I guess the spinal fluid couldn't drain off the brain as easily as it should, therefore she developed hydrocephalous (water on the brain). So the shunt drains excess fluid off the brain, maintaining a fairly constant 'normal' pressure on the brain. The fluid flows from her brain to her abdominal cavity in a tube, then it is absorbed by the body. Instead of doing anything with the shunt on her right side, Dr. Silberstein put a brand new shunt in on the left side. I hesitated to call it brain surgery earlier because I didn't want people to freak out, but that's really what it was. She has a total of maybe 20 stitches in three separate incision sites . . . two on her head and one on her belly.

Home again!

Well, I'll make this short. We're pooped! Sumana had a rough night last night, pain wise. However, she woke up feeling better and ate a good breakfast. We got the ok from Dr. Silberstein to go home. Because it was going to be a big 'party day', though, we got permission to stay a few extra hours so Sumana could participate.

In the morning, she went 'shopping' for a costume. The Spirit Halloween store had donated a TON of costumes. She ended up with a Fairy princess . . . very pink! I even bought a wrap from the cancer patient store to help cover her off-center reverse mohawk. (She's super self-conscious about her 'stitches' . . . I don't think she's realize some of her hair was shaved. Though, the surgeon did a nice job preserving some hair to 'flop' over).

While I was looking for a camera and a hat of sorts for her, a volunteer (whose family is from Chennai!) wheeled Sumana around the fourth floor and then started a game of Monopoly with her. (That's the first picture). The next picture is some of the PICU nurses. They had so much fun dressing up. Our favorites were the dreadlocks and 'Pebbles'.

I thought the trick or treating was on the children's wing of the 4th floor . . . it's REALLY long. Kids started at the PICU end and worked their way to the end. The hallway was lined with nurses. staff and students (most in costume, too)all handing out candy, silly bands, pencils, stickers, etc. etc. But at the end of the hall we didn't turn around and go back . . . no . . . another hall as long as the last one was lined with MORE faculty and students handing out MORE stuff! She got 2 HUGE bags crammed with stuff.

I must admit, before we were half through the 'parade', I started to tear up. There were sooo many kids. All dressed up: Jessie from Toy Story, Buzz Lightyear, Spiderman, Batman, Big Bird, princesses, fairies. Some of the kids walked independently, some in wagons or wheelchairs, some with IV poles, some obviously with cancer. And, all the staff and students were so eager to give things to the kids. I overheard some of them comment about all the 'thank yous' from the kids. It was a regular mutual admiration society. It is probably one of the most moving sites that I have witnessed in a long time. Everyone wanted to make Halloween special for kids that were probably going to miss the festivities at home. What a production and what a ton of love!

Anyway, Sumana is exhausted tonight, but glad to be home. Greig is back in New Jersey, but he'll be home for good Sunday afternoon. Sumana is cleared for surgery November 15, so please pray we can keep her healthy. Thank you!

Surprise (??!!)

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!!)