Smooth Sailing

Everything went smoothly today. The nurses were waiting for Sumana and took her right in. Dr. Silverstein's assistant attached 4 electrodes to her head. (see picture) That was to monitor her nerves so they could keep watch of what they were doing during the surgery. The Anesthesiologist was very informative and very friendly and answered all of our questions. The resident anesthesiologist is from Kerala, India (southern India just like Sumana - see picture).
Melody Burri and Deb Curtis came and spent the afternoon with us and we all prayed just before she went in. That was a real encouragement and Sumana kept up her high spirits. But nothing made her day more than when she got the 'mask' for the anesthesia so that she didn't have to have a needle. The resident scented the mask with strawberry chapstick so that it was a pleasant smell.
They took her in a little early, 1:15 and the doctor came back to the waiting room at 3:15. So it went pretty fast compared to what we were originally thinking. Dr. S. was pleased with the outcome. His only slight concern was a small nerve that went to her rectum had to be cut but there were many other nerves that were going to the same place that he didn't have to touch.
She woke up pretty quick and has been in a little bit of discomfort but over all pretty well. She has to be in a horizontal position (back, sides) until Wed a.m. Mom will be staying overnight at the hospital while everyone else tries to manage at home.
She is in Rm 9 in the PICU. 4th floor in the 2800 wing. (Red Elevator) Only registered visitors can enter so please call if you plan to come. (585-729-5849) No flowers or food in room. Balloons are ok but have to be attached to the outside of the glass doors of her room.

It's a Beautiful Day!

Sumana woke up all sunshiney today. She has a very positive attitude and is very agreeable. She's made it thru her siblings eating breakfast and actually was quite pleased to be able to have all the apple juice she wanted. (This is the girl who usually drinks ONLY milk or water!)

Thanks for all your prayers, posts, calls and visits. We are blessed with two supportive church families. It feels like God is using all of you to help us feel Him carrying us thru this tough time. Does that make sense? We're assured of His presence throughout the Bible, but the body of Christ really puts hands and feet to His word.

Well, I asked Greig to take his laptop to the hospital. I don't really 'do' laptops, so hopefully he'll do an update for me later.

Ready to go!

Well, we've had quite a few changes since I last wrote. A newborn needs surgery Monday, so (s)he goes first, then Sumana. We don't have to be at Strong til noon, so we cancelled the hotel . . . we'll all sleep better at home anyway! The de-tethering surgery is scheduled for 1:30 and will take approximately 3 hours. I'm actually trying to think ahead to use that 3 hours to catch up on something (don't know what yet!).

Sumana is pretty nervous about the surgery, she thinks it's going to make her left-side weakness better. I tried to explain that since she hasn't experienced any symptoms, she probably won't see any changes, except a sore back. I reminded her this surgery gets her one step closer to the VEPTR surgery, which WILL help her. She's also mad about her brothers and sister being able to eat breakfast. She's already making plans so she doesn't have to watch them!

We've been blessed with lots of good wishes and promises of prayer for Sumana. Thank you. It really encourages us. We know that Jesus is the Great Physician and HE will work mightily through Dr. Silberstein tomorrow.

She's gonna Soar!

Well, Sumana and I talked to Grampy and Grammy today (they're up in Maine). Grampy had a wonderful Bible verse and word picture to encourage Sumana. They have a resident bald eagle at their pond and when it took off, with great power and majesty, Grampy thought of Sumana. After going through these surgeries and difficult times, she will soar like an eagle. He quoted Isaiah 40:31: But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.


Sumana has been 'bumped' to the number one spot for surgery on Monday. Yee-haw! To top it off, because the Ronald McDonald house is full, they're going to put Greig, Sumana and I up at the RIT hotel and conference center. They even give a $20 voucher to use for food at the hospital. Wow! What a blessing! (Especially since we have to be AT the hospital at 6 am!) The surgery will take approximately 3 hours. Then she recovers in the PICU til Wednesday and then hopefully goes home.


I've had some people say they've have troubles accessing this blog, so I will be copying my entries to a caring bridge site: http://www.caringbridge.org/visit/sumana Feel free to pass this along to those who 'don't do' blogs!


In closing, a friend and I will be gone at a homeschool convention for a few days in Harrisburg. So, I don't plan to blog til Saturday or Sunday. Please pray for Sumana's continued good health right up to the surgery. She wants you all to know that she is a little worried about the whole surgery. So I guess, pray for peace for our little peanut, as well. Thank you!

The Surgery before THE Surgery

Well, we made yet another trip to Rochester today. Andrew's knee appointment took about an hour then we went to see Dr. Silberstein about Sumana. We were able to see her split spinal cord in the MRI (the medical name is: diastematomyelia---I had to ask for the spelling, of course!!) It seems to split in her upper back where her scar is. It splits for several inches and them comes back into one solid cord. They can tell that she was born that way, so it is of no current or future concern. (Whew!)



However, the surprise was in her lower back: the lumbar region. There were signs of tethering of the spinal cord. This basically means that it is 'hung up' on something, not free floating like it should be. Dr. Silberstein and Dr. Sanders had already consulted each other about these findings. Since it is in a completely different area than where the VEPTR will be placed, the surgeries cannot be combined. Dr. Sanders asked that the tethered cord be repaired and then we can schedule the VEPTR surgery 6 weeks from that date. Thankfully, she can have the repair surgery done on Monday, the 11th, so we're looking at the week of June 22 for the VEPTR. That's much later than I had hoped, but I am very thankful that the tethered cord was found NOW and not in the typical fashion. Usually, the person with spina bifida will have pain, or loss of feeling or bladder control first, THEN the tethered cord is found. It's quite a blessing to have this discovered BEFORE Sumana encountered any problems.


Remember what I told you about Sumana's feeling toward needles?? After her appointment with Dr. Silberstein, she had her pre-op physical with the NP and then had to get bloodwork done. Oh, boy! What a scene! The tech could see how wild she was just seeing the tubes and asked if we needed a 'holder'. We both said, " Oh, yes!" Thankfully, the 'holder' was fantastic with her. She asked Sumana's favorite song and she said 'Jesus Loves Me'. Well, let me tell you, that African American woman sang verses and tunes I'd never heard before. It was sooooo beautiful. It really took Sumana's mind off the whole needle thing. The woman said, "that's the way we sing it at MY church!" It was sooo cute!

So, we call Friday afternoon to find out her surgery time on Monday. All we know now is that it'll be early afternoon. That will be a long time without food, but I think she can do it. She's pretty tough when she wants to be. I hope to call Dr. Sanders' office tomorrow and get her VEPTR surgery scheduled. It seems like we've had a ton of progress in just a short time. It's funny how the wait seems so long, then things happen so fast I can barely keep up!

New Appointment

Well, no answers today but we do have an appointment scheduled tomorrow with Dr. Silberstein (the neurosurgeon). He wants to go over the pictures with us. I'm pretty impressed that they can get us in tomorrow. We have to go to Rochester anyway for Andrew's orthopedic followup.

Also, Dr. Sanders is in surgery tomorrow, but his secretary was nice enough to offer to e-mail an update to him so that he can stay in the loop. I guess we'll have to see what tomorrow brings before we know when a surgery date can be set. I'm pretty excited to have Dr. Silberstein explain those beautiful, time-intensive pics!

Sumana would like you all to know that she did push ups today. Miss Kristen (her PT) was very impressed with her trunk control. Way to go, girl! She 'says' she did 30, but I'm thinking it was 15. Whatever way you count it, it is quite an achievement. Sumana can't wait to show off her talent to her dad and big brother, Jeffrey!

A VERY LONG DAY

All I can say is "Poor Sumana." What was supposed to be an hour lounging with soothing music, turned into a 3+ hour, ear pounding marathon for Sumana. The MRI was much more complicated than anyone would have thought. We had watched a couple videos online to prepare her for the MRI, but hardly anything was the same. There were no headphones, so only loud banging and beeping. AND, before we even left the waiting room, Sumana was flipping out about having a needle to inject the contrast dye (we had no warning about that one!). Thankfully, the tech asked around and was told it would probably be okay to omit the dye. (Whew!)

The tech had no idea what she was up against with Miss Sumana's spine. In her words, Sumana's spine is so 'out there' that she had to do tiny scans each time, instead of the larger scans that are standard for a typical spine. (Her thoracic and lumbar spine were scanned). Her spine curves and twists in so many directions, it took FOREVER to scan. Thankfully, (again!) the tech consulted with three (count 'em, 3!) radiologists. They were able to pinpoint areas that were crucial to scan and they also were able to cut out a bunch of scans that weren't as necessary. So, that's where the 3 hours came in. If they had scanned the entire area, we would have been there much, MUCH longer. Now we have to hope that Dr. Silberstein can see what he needs to see, otherwise he may want to re-do the scans with the contrast dye. (oh, no! The needle!)

Sumana got one short 'intermission'. She got to sit up (ooooo!) for a few minutes. I had originally thought that the MRI would be over by 12:30 at the latest, so we hadn't thought of eating lunch beforehand. When we finally finished around 2:30, the poor girl was STARVING! Throughout the whole ordeal, she had such a good attitude, (well, except the needle surprise!). I can't get over how well she did. Her back started spasms at one point (just before her 'intermission'). But she had been laying still for almost 2 hours!

And, I have to mention big sister, Gretchen. While Sumana was on the MRI table, Gretchen was in the waiting room with our respite baby. What a trooper! Both of my girls went above and beyond any of my initial expectations. I hope we don't have to repeat this adventure!

I'll call Dr. Silberstein's office on Monday to find out what he thinks of Sumana's pictures. I'll let you know when I know! Maybe we can even schedule the VEPTR surgery with Dr. Sanders! I like to be optimistic. The wait has seemed pretty long, already!