Planning a trip

I wish we were planning a vacation, but instead we are planning a trip to Detroit to see the famous Dr. Chugani. We go up Monday the 24th of August and will be there through the 27th. While we are there, Maddie will have a 24 hour EEG. To put the leads on there, they will swaddle her like this:
1st_Detroit_Trip_032[1]1st_Detroit_Trip_034[1]
That is Trevor, Danielle’s precious son who was just seen in Detroit. I am dreading this as she always hates that part and being restrained (while speeding up the process) is probably going to stress her even more. Which leads to bigger seizures.


Then, for the last 6 hours of the EEG, she will have to fast because she is being taken Tuesday afternoon straight from the EEG to the first of two PET scans. That one (the FDG) is a relatively short PET. Then we will leave the hospital and go check into our hotel for the night. But she will have to fast most of that night too, because first thing Wednesday morning she has another PET scan (the FMZ). This one is longer, and they said we will be at the hospital til early afternoon. Then we’ll go back to the hotel and rest, until heading back to the hospital Thursday morning to finally actually have a visit with the good doctor. And then we fly back home that afternoon.


Sounds fun, right?


All of this is being done to find out if Maddie is a candidate for brain surgery. If they find that most of her seizures are originating from one location (a seizure focus), then theoretically they could cut out that part of the brain and either stop or reduce her seizures. I know it sounds drastic, but we have yet to find any real hope for seizure control with medication. We still have more to try, but with each med failure, the chances of success in finding seizure freedom get lower. She has been having seizures for over 7 months now and she has only regressed in that time. We have seen no forward developmental progress since she was 2 years old. So we need to see if surgery is an option.


Unfortunately, for most kids with Infantile Spasms, surgery is not an option. It is because these seizures are usually very generalized, meaning the whole brain is involved. And she obviously needs to keep alot of the brain in order to function. So we go with hope, but knowing we are likely to be disappointed. And that is the part that scares me the most. While brain surgery is scary, to me it is even scarier if that surgical door is closed, and we are stuck in the trying and failing medicines game that we are playing right now.


So we are optimistic, but only very cautiously so. I am also hopeful that even if she is not a surgical candidate, that Dr. Chugani, with all his IS knowledge, will point us in the direction of some further testing that may be helpful. Or that he may have other treatment ideas. We just need some new fresh thoughts on what to do for her. We love our Neurologist, but we just want to exhaust every option. Which he agrees with totally. So to Detroit we go…..although we are still waiting on the final approval from our insurance company…..hopefully that comes early this week so I have one less thing to stress about.


And for this trip, my mom will be accompanying Maddie and I. Brandon will still be in the California desert training. We came to the decision to go ahead and do this now so that if (a big if) she needs surgery, we might be able to do it before his deployment. The other week they offered us for the Detroit visit was his last week of leave before the deployment. And as much as he wanted to be there, that is not really the way we want to spend our last family time together. I can say without a doubt that we have had enough quality family time together in a hospital for a lifetime.


This trip could not come at a better time seizure-wise. For some reason, her seizures have been on the increase lately. Right now she has four clusters of about 20 minutes of seizures per day. Plus some other head drop seizures and single spasms. So seizures are not under control at all for her right now. More data on the EEG for the neurologists to work with I suppose……


This beautiful, amazing, wonderful, happy little girl needs a break. 20090608_4797


Love to everyone,
Liz, Brandon, and Maddie

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13 thoughts on “Planning a trip

  1. Oh Liz…my heart is so heavy for you. I know how soul draining this is. And the toll it takes on all aspects of your life…and on Maddie.

    You’re strong…and so is she…and in a little while you’ll be on the other side. Able to breath again. As much as you can when your child is suffering anyway.

    I’m glad your mom can join you. Try to make the most of the inbetween times. We were surprised at how lovely Detroit was. The river walk is really pretty…and hopefully it’ll be warm enough for Maddie to splash in the water!

    Thinking of you this week…

    …danielle

  2. Hi Liz,

    I have not been in your position, but having read through the journeys of so many others, I am aware at how huge and scary it is to take this step.

    I know all you want is the best for Maddie, and for her to have everything you always dreamed of. Just keep that in mind when you go, and how difficult it will be to see her go through all the testing…it is for the chance at having those dreams come true.

    Thinking of you guys and sending prayers and hugs,
    Jody

  3. Well, yeah, I’m pretty much hoping you guys can get a miracle out there, and if not, then a signpost in the direction towards one.

    Shame they cannot do both PET scans together, better than having to put her under twice.

    Wow, big week for us both isn’t it? Is your final meeting with Chugani on the 27th? That’s a wild coincidence if it is.

    Wish somehow I could offer some kind of support, be there for you guys, that’s a really rough few days up there. The worrying, the waiting, the anticipation…I’d give a lot to be able to at least just stop by and say hey.

  4. Ironically, the barbaric-looking swaddling was very calming for Austin. He’d had two or three EEGs prior to the one in Detroit (without swaddling like this) and screamed like a banshee and thrashed about through the entire process. It was extremely difficult to calm him down even when they were done. The EEG tech in Detroit was wonderful! Austin even fell asleep while he was putting the leads on. The only issue was the heat of being wrapped up, but when we started fanning him, he immediately drifted off to sleep.

    It will be a draining week with all the sedations (we had two PETs and an MRI -3 three sedations in four days), but hopefully Dr. Chugani will shed some light on Maddie’s condition and make the stress of it all worthwhile.

    I loved the words Ken used in a post of his a while back…”cautiously optimistic”. Seems very appropriate for this situation. Don’t go with no optimism. But prepare for and entertain all possibilities.

    And you’re right…your beautiful Maddie DOES deserve a break. And I’ll be praying that she gets one soon.

    (((hugs)))

    Holli

  5. Yes she does deserve a break – you all deserve a break. And sure hope you get one in Detroit in the form of any treatments that will help you all move forward and rid your precious daughter of the seizures. Praying hard for all of you!

  6. I am sending you love, love, love, kisses, hugs and smooches! I know this is a living hell for you. Maddie remains in my prayers as does your entire family. It is time for a break for all of you!!!

  7. We love all of you so much and our hearts have always been with you; we will continue the prayers; hoping for good words from the dr; will be praying for little Maddie for rest and peace and comfort.

  8. Liz
    thank you for doing the post. I am always anxious to know what is happening with Maddie. Yes, Maddie does deserve a break — all of you do. I was glad to see the post from Holli after viewing the swaddling photos. I hope it is calming for Maddie. I hope the PT and Speech therapy went well for Maddie today and yesterday and you have a safe trip back to Charlotte. I pray next week will bring good news for Maddie.
    I am sorry Brandon cannot be there, but glad your mom can.
    All of you are in my thoughts and prayers.

  9. I will be hoping for the best outcome for Maddie. I just cannot believe how much she has overcome already in her short life. She is beautiful as ever. I hope they find a focus so that you will have a choice – choice is all we want. To know that surgery can be an option if we choose it. I’m sorry she is having so many recently – hope the drug combo improves things soon. Between Maddie and Bennett I have a lot of good vibes to send next week. I think about our children all the time. If there was a magical way of becoming a neurologist (magic = less than 2 years study…) then I would do it so that I could better understand this mess.

  10. Liz,
    I am so sorry that Maddie is still suffering so much. Her and your strength continues to amaze me! I know how difficult it is to helplessly watch your child suffer and struggle, although on a much easier level than you! I pray that this trip will provide some answers and relief for Maddie. You are always in my thoughts and prayers! If there is anything we can help with please let us know.
    God Bless,
    Marcy

  11. Dear Liz,
    We are praying for many things for you and your family. We pray that you have a safe trip, that Maddie finds the comfort that Austin did with the swaddling and that you finally get some answers that will relieve your precious little girl from IS.
    Good Luck to Miss Maddie!! We hope that your trip goes quickly and smoothly!!
    Truly,
    The Cookes (Abigail’s family)

  12. Hello! I found your blog and noticed you mentioned Pittsburgh…we live about an hour outside of Pittsburgh in Ohio. We have a son who is 14 months with IS. He began having seizures at 10 1/2 weeks old. The last year has been a crazy ride. He has been on 12 medications and is currently on the ketogenic diet. I am really interested in the dr in Detroit. Hope things are going well with you all!

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