Sunday, April 17, 2011

Detroit 1-8-7 (well, ok, not really, but we like to pretend)

This is your baby. This is your baby burrito. This is your baby burrito with EEG leads and VEP goggles on. This is also what a CLEAN (outside of the left hemi schtuff) EEG looks like. Yup. That's right, you heard me. Clean. As in, almost 11 months know, those things. The things that we were having HUNDREDS of a day, that knocked my girl on her butt, that suppressed all her little brain wanted to learn but couldn't. This is what removing half of your brain will do for you. Dramatic, eh?

So, as you can tell we had a recent visit to our Angels in Detroit. Where we once again got bundled up and sat in front of the video monitor for what was supposed to be a 23 hour VEEG. Charli however decided that at 1am she had enough and they had enough info and ripped her leads off. And the tech wisely decided to not attempt to re attach the leads. Im sure someone would've gotten bit. Sure of it. So Monday at 10a we were hooked up, and came off at 1am Tuesday morning. Dr. Sood and the gang came in on rounds for consult (asked by Sarah very nicely several times) because of the fluid issues we have been having. Charli was awake this time and showed some of her stuff (only a little bit) Previously Katie and Trish had come in and she was sound asleep. Everyone wanted to see her and have her show off her talents. Dr. Sood ordered an ultrasound of her tummy to rule out fluid off to Radiology we went. US was neg, so we were out of the Ronald McDonald House to be back the next day for our appointment with the Rock Star and the junior Rock Star Kevin. OH. Let me back up a bit. Monday when we were checking in to EEG Kevin came walking thru and immediately came out to say hello and give hugs. He knocked me on my ass when he sat down and said "whatever happened with her sinus venous thrombosis?" My doubt is that he had just been reading her chart. My belief is he is just that good. How he remembered that is beyond me. But it floored me, and reminded me of yet another reason WHY I LOVE DETROIT SO MUCH. The care and concern and attention to detail that is shown by ALL of her medical team is astounding. So we somehow started talking about her last eye exam (and the disaster that it was) so Kevin hops up, and goes in the back, comes back to us, and says when she gets disconnected tomorrow we'll do a VEP. HELLO. Do we know how long it takes to get a VEP in Boston? ANNND not only did they do a VEP, they did an ERG as well. So I don't have to get back to Boston til May now. EAT THAT ACCREDO!! Seriously, these are tests that we fight over. There are only so many spots on the ONE Thursday a month they do them and it's not an easy feat to get scheduled. And Kevin (Dr. K) goes and gets it set up like *snap* that.

So on to Wednesday, our appointment with Dr. Chugani and Dr. K. (Sharief was out of town, so we missed him this trip) :( We did see Dr. Asano tho!! Dr. K comes in before he sits tells me that the EEG was clean (outside of the slowing from the left hemi, because, well..there isn't that will always be there) but there were no recorded episodes or spikes or discharges. YAY! I was dreading the results for some reason. I don't know why. I always have a freak out moment right before getting EEG results. Because I know they can change in an instant. We even discussed (once Dr. C came in) how prone she is to focal and partials because of the shunt. (and given the possible focal activity during her second revision and a few weeks ago I don't doubt that for a minute we could be faced with a med change at some point) But for now I celebrate our clean EEG, and the fact that my girl is doing AMAZING. She was VERY cranky and had a meltdown in the appointment, but was quiet long enough for Dr. C to look at her, and assess her a little bit. He was very happy with her progress, and said that if not for the revisions we probably would be farther along. He said, confidently, "She will walk. She will. probably soon" He also said "she will talk" If Dr. Chugani says something with confidence, in that manner that he has, sitting back after pondering for a few moments, I know without a doubt it will happen. He told me that pre op. "she will be fine. She will progress. She most likely will not have another seizure" If he speaks, I listen. We had a fabulous conversation about a possible new treatment to reverse the vision loss from a hemi being done on monkeys right now, albeit a very risky surgical procedure. Dr. Chugani is in the process of researching a med that could produce the same results. He has some of his older kids in the study. He said maybe Charli could be in it as she ages. Talk about cutting edge.

There was some concern about the fisting of her right hand and indwelling thumb. Dr. C had talked about a tendon release surgery before she had her hemi to happen sometime down the line. Kevin had looked at her hand when we were sitting in the waiting room when we first bumped into him. We actually bumped into Dr. C in the elevator when we were going up to 5West for the EEG Monday morning. The first thing he did when he saw her was pick up her right hand and look at it after he said hi to us. So a conversation started about rehab, and physiatrists (and the lack there of around here of pedi ones...much like neuros) and Kevin asked if she had ever seen anyone before. I said no, she saw Dr. Chinarian when we were deciding on inpatient rehab vs going home, but she has never actually been to a dr of physical medicine. So he says "hold on" and leaves the room. Comes back and says "I had to pull some serious strings, but I got you an appointment with Dr. Pelshaw for tomorrow morning." WHAT. What neurologist sets up appointments? Ours. That's who. I laughed later at the thought of Nichter even suggesting she see a rehab dr much less attempting to get her an appointment. There is the difference between AMC and CHM. Dr. Adamo would do it. He is different. He is special, and has a Childrens Hospital special quality to him. But the rest of AMC...I think not. We are lucky enough to have dr's that not only care but are proactive and thoughtful. Dr's that want to see their patients get the BEST OF EVERYTHING. Including physical medicine. So we met with Dr. Pelshaw Thursday morning...who is an amazing person, kind and considerate for seeing us first thing before his day even began (when he had to see patients then go off campus to another location to see patients) Dr. P was very impressed with her ROM, even tho her right hamstring is tight, her heel cord tone is good, supination of the right arm is good (worse on the left but we are all aware of that on her team at home) He asked what therapies Charli was receiving. I rattled off her list and her frequencies and he stopped and looked at me and said "you are quite the advocate. That is WAY more than most of our kids get here" I shrugged and replied, "nothing but the best, that is why we are here". So the plan is to do Botox in her right hand by her thumb in her palm. ANNND we have an appointment MAY 5th!!! That means back to Detroit in a few weeks! and this is only made possible because of Dr.K. I know for a FACT that would NEVER EVER happen at AMC. We are lucky to be listened to at Albany Med. The docs at CHM make us feel like Charli is the only patient they have that's how devoted they are to her and her care. I honestly, truly, can NOT say enough about CHM and the dr's that are part of Charli's care.

I wish I could accurately convey my thanks and gratitude....and I'll never be able to...for as long as I live. But this smile ------> over here, that smile...that is my way of showing them all they have done for us, and how they changed my little girls life. Because everyday is truly a gift. Everyday is miracle. A blessing. Everyday this is possible because of CHM.

I love you Detroit, and all of CHM. And my favorites. You know who are you...... :)


KC's Warrior Mama said...

Wow, just amazing. I visited them once to see Chugani and loved it as well. So glad to hear the good news about Charli's EEG!! And to hear Dr. C's predictions about her progress is just awesome :) He is like the one person I would trust to make that kind of prediction. Yay! Keep up the excellent work Mama (and Charli!)


Smilen Champ said...

Hi Charli
My name is Jenna and I came across your site. U are one brave courageous strong, determined, happy fighter. U are full of smiles, life, spunk, and an inspirational hero.
I was born with a rare life threatening disease.