Two down, two to go

We are back at our hotel after a grueling two days. Maddie was truly put through the ringer. As a mom, it is so hard to know that I chose to come here and put her through all this testing. She has just had too much stuff done to her and I wish there were a way I could protect her from it all.

That said, we are done with the worst of it. She had hundreds of seizures on the overnight EEG, so we feel sure they should have some good data there. The biggest hurdle today was getting a good IV line in her. They had one put in upstairs before we went down for the PET scan, but by the time they were ready for us downstairs, that IV was no longer working. It took us awhile to get another line started, so Maddie was absolutely screaming and sweating by the time they injected the tracer. Then from the stress of it all, she had a huge cluster of seizures during the uptake EEG. She then continued to have seizures while sleeping in the PET scanner. She had not slept at all last night so after the PET scan was over she just did not want to wake up. She slept off the sedative most of the afternoon, so it could be another interesting night. She has to begin fasting in the middle of the night again for the PET tomorrow morning.

So we have another PET Wednesday, which means starting another IV in the morning. Then we will return to the hotel and maybe even venture out and see something other than the inside of the hotel or the hospital in the afternoon. Then Thursday morning we meet with Dr. Chugani to get the results of all the testing and see if surgery might be a possibility for Maddie.

Now that I am here, I think I am getting my hopes up that he will in fact say she may be a candidate for surgery. I had tried to keep my expectations low, because I hate to be disappointed. But I just think that I couldn’t have put her through all this if I did not have hope that it might lead to a better outcome for our little girl. Either way, it was something we had to do to try to answer all the “What Ifs?” in our heads. I think that at the very least we will get good information about our next steps in this fight to get her seizure free.

So keep her in your prayers please as she undergoes more anesthesia and testing and as we get the results.

Love to everyone,
Liz

*random note* for anyone interested, I finally added a link to a video of her seizures on the main photos page. If you click on the Photos tab at the top of our site, the link is on that page.

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13 thoughts on “Two down, two to go

  1. You have been in my thoughts. Thank you so much for updating. I know how exhausted you must be. I am so sorry to hear about all the trouble with the IV. It is heartbreaking as a parent to put your child through all of that. I hope you hear those two so very important words from Dr. Chugani…surgical candidate. It is so scary to think about but I hope Maddie has that option.

    By the way, while Maddie is sedated during her PETscan tomorrow, I would go up to the 2nd floor and sign the request to get a copy of all the test on CD for your records. They will mail them directly to your home address.

  2. I know this has been/will still be a difficult week for you. Even harder when you run into bumps in the road…like trouble with IVs and no sleep. Hoping you are both resting peacefully as I type this (should be 1:30 am your time!)..

    Thursday will be an important day for Maddie. I’m hoping and praying he will come in with promising news.

    And, there’s nothing wrong with hoping with all your heart that you get those all important words Thursday. Hope is what keeps us going. It’s what has kept you searching for Maddie’s miracle. But, you lose that hope, you’ve given up. And I know you won’t. Kind of like you said, no one would go in search of answers if they didn’t hope to find them.

    Thanks for keeping us posted!

  3. Maddie, you are a braver man than I Gunga Din. My prayers which now occur three times a day are for you, your mommy and daddy. May God bless and keep you in his hands and heal you. With much love…

  4. I truly do NOT understand…and find it frustrating…that they can’t just do the whole sha-bang in one day. Nurse Ruth told me that they don’t like to keep little ones sedated that long. Which is okay. Except if all these tests lead where we are hoping…they’ll be sedated for a hello a lot longer! And it sucks that you have to go through that again.

    I hope it’s smooth. I say that…and mean it…but have lived through the opposite of smooth. Which is why I’m SO soap-boxy about it!

    Love and prayers…

    for grace & peace…

    …danielle

  5. i know it has been said many, many times by many, many people, myself included, but i just have to reiterate: you all are so brave, strong, and resilient….incredible people! thinking of you this week, as always…..

    sam, danielle, and aida…….hugs.

  6. Liz,

    Goodness, it sounds like you and Maddie have been drained so much with all the rigorous testing, but know it is for the sake of Maddie. It is very hard watching your child go through so much and be fighting through it all, but it is for her chance at seizure freedom. You guys are doing absolutely amazing, and you are almost through with the testing. Just hang in there and hold on tight to Maddie.

    Prayers and hugs,
    Jody

  7.  In reference to your comment Danielle Foltz, I asked them if we could try to do it all together and the issue (in addition to long anesthesia) was giving both PET radioactive isotopes back to back. I think they want you to have fully metabolized and excreted the first before they give you the second. 

    Took three IV sticks again today and triple the drugs to keep her asleep. She kept having seizures during the PET which would make her move so they kept giving more drugs. But she woke right up afterwards today.  She is drunk but talking and eating, so being  herself( except for the drunk part).

    Also, Elaine, the nice folks in the PET dept said they would just make me a CD of both scans and send them to me when they make one for our Neuro. But I will still need to go to the file room to request a copy of the EEGs. I never left the scan room today since this little girl was very hard to keep asleep.

    Woo hoo. Bad stuff is complete. Getting the results is all we have left. Phew. I’m just glad that is all over. Whatever happens now…….we’ll deal with.

  8. I’m so sorry she has been through so much, but hopefully it will be worth it & you’ll hear the magic words from Dr. C!! Keeping the faith! she sounds like such a trooper…all of these kids are. Try to sneak in some fun while you guys are there. {{{hugs}}}

    P.s. is Connor the only kid that hasn’t seen Dr. C in the past few months??? He should be giving you all a group rate…ha ha ha

  9. Liz
    Maddie, you and your mom & Brandon have been on my mind all week knowing what you were going through. I know you would rather be going through it yourself then watching Maddie have to go through it. After your description of what is happening while she is there, I remain positive that she will be a candidate for the surgery. My prayers are with you and especially Maddie. May God grant you peace with all the decisions you have had to make and hope for Maddie’s future.
    Love to all,
    Loretta

  10. Hi Liz

    As the representative of the other Gorman family on the ALL-Kids list, please know that Maddie, you and Brandon are in the forefront of my thoughts. I will continue to hope and pray that the doctors will find an answer to ending Maddie’s seizures. Sending hugs and hope your way.

    Mark

  11. Saw your comment on Bennett’s page & just wanted to say I’m sorry and you guys are in my thoughts. Looking forward to seeing what all Dr. C had to say, and your impression of the visit. Take care….{{{hugs}}}monica

    P.S. i completely spaced on getting back with you as far as the OT I was telling you about (blame it on sleep deprivation) she is expecting a baby in a few weeks and wasn’t picking up any patients, and we were told that the person taking her spot wasn’t that great. Sorry!!

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