Saturday, October 30, 2010

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).

Friday, October 29, 2010

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!

Thursday, October 28, 2010

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!!)

Tuesday, October 26, 2010

Back from Rochester

What a day! We left at 7 am and got home at 4. Everything went very smoothly but it was exhausting. Here's the day in a nutshell:

Dr. Gearinger (pediatric eye doc): Sumana's right eye drifted outward for him (which he said is better than drifting in??!!). He said he has a similar problem. He showed her an exercise to force her eyes to focus near and far repeatedly. His main concern was if this was an issue related to her shunt. Her eye pressure was ok, but her optic nerve is so damaged from birth that he really couldn't say if it was inflamed or not. So, she's to try out these exercises and come back in February.

Nerve testing: Miss Kathy and Miss Lisa rigged Sumana up with a bunch of sensors and wires and then zapped her with electricity. (cue mad scientist cackle!) It really didn't bother her much, mostly crazy laughing from the tickling action she felt as they cleaned her skin and placed the sensors. However, the funny thing for me was listening and watching Miss Lisa. I imagine she is an older woman from the former Soviet Union. She would count as she raised the electric current. "I'm at 8 . . . 9 . . . 10, are you ok? really? let's keep going: 11 . . . 15 . . . 16 . . . 19 . . . 20 . . .. 21!!!!!!! I could just picture her as a former KGB interrogator!!! (I must have been desperate for some entertainment!!!)

Indian lunch: We went to Mysore Woodlands again. They have such great food. I still get a kick out of watching Sumana eat. This time we had Gavin with us, so we got to watch his reaction to the food. He seemed to love the chicken, rice pudding, and naan. I guess the restaurant staff must have thought he ate a lot . . . they charged us $5 for him??!!! Well, it was for Sumana and it kept Gavin happy, so I just went with it. (Note to self: don't take Gavin next time!!! or only feed him his baby food!!)

Dr. Sanders: Sumana had the obligatory pre-op x-rays and physical with Nurse Suzanne. Dr. Sanders came in and discussed his plans for the next surgery. He thinks this is the last lengthening he can get for the rods, so the next surgery will be more involved because they'll change out the rods. He was pleased with how this VEPTR looked and is optimistic about this surgery. He will reserve a room for her again, but as long as things go ok, we can head home the same day.

He did seem to think it would be a good idea to run Sumana's symptoms by Dr. Silberstein(her neurosurgeon). He doesn't see any potential complications with the upcoming surgery, but because of the symptoms, he advised us to get Dr. Silberstein's opinion. That will be on my agenda for tomorrow.

Thanks for praying for us . . . I'll try to keep you more informed over the next few weeks.

Monday, October 25, 2010

Lots of appointments tomorrow!

UGH! I'm already dreading tomorrow! Sumana already had 2 appointments scheduled: nerve testing with Umit and then a pre-op appointment with Dr. Sanders. However, just in the last 2 weeks we've noticed Sumana has developed a 'lazy eye'. She JUST had her eyes tested in August, but the sudden, noticeable change made me call her eye doctor. He is concerned and wanted to see her right away. So, we are his first appointment tomorrow. (That means we're leaving . . . with Gavin . . . no later than 7 am!!)

I haven't posted about Greig in a while. The life insurance sales job proved to be way too much . . too many hours, too little pay . . . too many 'rough' characters, etc., etc. Thankfully, just when we started looking, Olan Mills was hiring in our area. So, Greig is back with them again!! Yea!! He was in Philadelphia last week, Princeton, NJ this week and hopefully back in NY next week after training.

Andrew had an appointment last week with a knee specialist. The sort of good news is that he doesn't need surgery right away. The bad news is that he has WAY too much flexibilty in his knee joint. That means that the doctor needs to do a type of knee reconstruction . . . he'll actually graft in a 'new' ligament to try to hold his knee in place. However, since the area that needs to be worked on is right around his growth plate, the doctor wants to wait until the growth plate closes. He'll check it in 6 month intervals. He expects to do the surgery in a year or so.

Oh, yeh. So, because Greig will be traveling a lot and work most nights, I decided to quit my beloved library job. It just seems impossible to be able to keep up with everything AND work. I'm really sad about it, but I know it's another one of those 'seasons' that I need to be more flexible. Hopefully, life will be less hectic.

I'll try to update in the next day or two to let you know about Sumana's appointments.

Saturday, October 16, 2010

'Hi' from Sumana

Sumana is unhappy about me posting 'not so often'. So, here's some Sumana talk:

Hi, Miss Kristen, Matt and Megan, and I have no clue who else!!! I've been playing with my baby doll and watching TV. Mom made me do the Wii today. I did balance games, aerobics, yoga, pretty much everything on the balance board. She also makes me do my exercises every day except Sunday.

AWANA is fun and teaches you about the Truth. AWANA stands for: Approved Workman Are Not Ashamed. It is from II Timothy 2:15. Falling Leaves night is coming up this Monday. I'm going to do a leaf rubbing and maybe press some in wax paper.

Miss Becca is working me hard (note from Mom: though we haven't been to PT in almost 3 weeks!). I work on balance, strength and treadmill.

Sunday School with Miss Jean is fun. We do crafts and learn Bible stories and have snacks.

And . . . that's all!!

Saturday, October 9, 2010

We're back!

We had a fantastic trip to the Philadelphia area. While Gretchen toured Valley Forge Christian College, Jade, Gavin, Sumana and I toured historic Valley Forge. It was a rainy day, but we managed to take in the visitor's center (with video), and we took an audio tour in our van. It was really interesting to see where history happened. I guess I was in Valley Forge as an 8 year old, but it all seemed new to me.

After getting lunch at the college and a few meetings, we headed off to the King of Prussia mall. What an amazing place! Two levels, with TONS of stores. I guess it's the largest retail mall in the country. We were surprised at the variety of stores and the good deals. But, none of us bought a thing! We were true 'window shoppers'.

We dropped Gretchen off Tuesday morning at Philadelphia Biblical University. It was still rainy with frequent downpours, so we opted for a trip to the Adventure Aquarium in Camden, NJ. It was right across the river from Philadelphia. On the way there it was fun to see all the signs and billboards cheering the Phillys.

It was homeschool week at the aquarium, so that meant that we got in for LESS than 1/2 price (regular tickets are $23!!!) It was an amazing aquarium: floor to ceiling windows, glass tunnels that go through/under the tanks, hippos, penguins, of course all kinds of fish . . .!!!!

It was a great trip in spite of the weather. I sure was glad to get home and not have to drive in any more rain with tractor trailer trucks all around me!!!!

Saturday, October 2, 2010

Off to Philly!

Well, we take off for Tatamy, PA and a quick visit with the Tielmanns. Gretchen will check out Valley Forge Christian College on Monday, then Philadelphia Biblical University on Tuesday. Jade, Gavin, Sumana and I will visit historic Valley Forge on Monday and depending on the weather Reading Terminal Market and a drive around tour OR an outdoor walk around Independence Hall and the surrounding historic area.

The bummer is that Sumana is going on the trip with all kinds of meds. She is being treated for bronchitis/early pneumonia. She got the meds yesterday and thankfully, she's much better already today.

We'll have pictures to post when we get back. More on Wednesday or Thursday.

BTW, my friend who also has a daughter with spina bifida, posted this on Facebook: "October is Spina Bifida awareness month. Spina Bifida is THE most common, permanently disabling, birth defect in the nation. More babies have it than cerebral palsy and muscular dystrophy combined! 7 out of every 10,000 babies are born with Spina Bifida. If you know, are related to, or love someone with Spina Bifida, please re-post to spread awareness!! I love someone with Spina Bifida."