Friday was the last day of tests for this trip. And it began in the ER again.
When we had the tube reinserted on Wednesday night, my Dad and I noticed that they didn’t measure it – they just did it. We thought that maybe Hershey just did it differently and didn’t question it.
Thursday afternoon, Tori started to be very angry during feeds and sounded very uncomfortable. She then started vomiting a little bit during the feeds – not milk, but this yellow liquid. She also had not gone #2 since before the MRI. We thought it might just be from the anesthesia, so we let her do a few more feeds to be sure, after I consulted a nurse friend.
By Friday morning, she was still crying as if she were in pain during feeds and she was still vomiting a little. So, we left early for the hospital to try to ensure that she would still make her appointments.
Yeah, that didn’t happen. We missed the first one entirely, and were 45 minutes late for the second. There is no such thing as a quick ER visit.
They took her to have an X-ray of her stomach to see where the tube was, and while we waited for the results they took her vitals. When they went to take her temperature rectally, she got SO mad and ended up solving one of the problems! Haha. We were laughing SO hard because so much came out! I know this is TMI…😉 but with babies, you have to watch things like this.
The X-ray showed that the tube was coiled in her stomach, meaning that it was far too long. Amazing how, in just two weeks, Brennan and I have become so knowledgeable about NG tubes. This explained the yellow liquid somehow, but I can’t remember.
So, lucky Tori got to have another tube replacement! Poor baby. They did a second X-ray to confirm placement and we were free to go. She has been fine ever since.
After over 3 hours in the ER, we ran upstairs to her first opthamology appointment where they tested her Visual Evoked Potentials (VEPs).
She was so tired that I had to work to keep her awake!
Then, her final appointment of the day was another opthamology one. They dilated her eyes and looked at the anatomy.
We will know the results at some point next week.
We then headed back to the hotel where some friends came to see us and brought me Chipotle for dinner! We had a wonderful visit and we spent time in prayer for Tori.
We got up early this morning to catch our train. We are being followed by a huge snow storm so we are very thankful to be in a train, again.
We were amazed to find out yesterday that country star Rodney Atkins had tweeted about Tori! A friend of ours grew up with him and he shared Tori’s story with Rodney. We hope this will help raise awareness of Krabbe and help the fight for newborn screening across the nation.
We will soon be reunited with Brennan and we can’t wait!
Next week, Tori will see a geneticist, a G.I. doctor, possibly Early Intervention, and I think that is it. I also have a podiatrist appointment. It will be another busy week, but we will at least be home.
We will return to Pittsburgh in late May for an evaluation and follow up testing. Brennan will be able to make the trip with us this time, thankfully! Please pray that her brain will be healed by the time we go back – what a testament to God’s power that would be to even more medical professionals!
Even So, Joy 
so sorry it was not an easy day for you– I can’t imagine how worn out Tori was! something is on the way to your P.O. box. it was supposed to be there yesterday, but for some reason it’s delayed. i’m hoping it arrives today! we are all praying for you and your family 🙂
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Too bad the people who inserted her tube weren’t more careful and knew what they were doing.Sorry,but that made me very very mad.This baby is going thru enough without someone who is supposed to be professionals to make a mistake that caused her more pain.
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Hello! I’m the home health nurse who came to see you when you were discharged from the hospital. A co worker of mine knows someone who showed her your blog. She forwarded it to me two days ago, knowing that I had seen you. I have been praying for and thinking of Tori since that night, and wanted to let you know.
I also have a question that pulls me out of my comfort zone a little. But I feel like God has been placing it on my heart for over a week, and it won’t go away. So… I have quite a lot of breast milk in my freezer that I just don’t have a need for right now. I’m able to keep up with my daughter’s feeds while I’m at work, and still produce extra. Every time I open my freezer, it is like God is standing behind me saying, “why are you keeping all that milk? YOU don’t need it.” Do you want it? You can email me at aswitmer@dejazzd.com.
Blessings and peace! I will continue to keep you all in my prayers!
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I’m so sorry the transplant wasn’t an option for you guys. I was so shocked to read that post, since she only started showing symptoms 6 weeks ago. I hope you’re all handling this okay.
Have you looked into any clinical trials that might be going on for Krabbe? There’s always medical research going on, so there could be some trials you can try to sign up for. I also heard there is gene therapy available in Italy, but I can’t remember if that involves chemo or not. I’ve also heard (this is completely anecdotal though) that breast milk may help delay disease progression? It might just be coincidence (there are over 100 mutations of Krabbe and all progress differently) but I’ve heard this from about 3 different people now so I am curious.
But, above all else, just cherish the time you have with your baby. Love her, spoil her, keep her as happy as can be. Rather than mourn the time she may not have, celebrate the time she does have. Her time here may be short, but love & memories last forever ❤
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That train ride home was such a beautiful gift! The snow, like a peaceful blanket covering everything. Such a reminder that the Lord is with you all!
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I’m so sorry to hear the most recent news. Tori and all of you are in my thoughts often, even though I don’t post much to you guys. It hits home so much up to this point after dealing with our daughter’s cancer. I am still asking for prayers for no pain for Tori and a miracle for her healing. You 2 are such wonderful parents. Don’t ever doubt yourselves on that, or second-guess yourselves on anything.
We in our family still deal with a lot with medical issues. In all the time we’ve dealt with everything and all the different people we’ve come in contact with, no one ever mentioned an ICM for our family until this week. Hopefully someone has brought this to you, but if not, it may be something that could help you keep your sanity, or at least that’s what I understand. I’m just now starting the process for our family. But I was told an intensive case manager would help keep all of our appts in order for us, help us decide if we can make it to one appt in time from the last, set up any transportation, fill out paperwork by hand or on the computer, and many other things. I would like things to be as easy as possible for you on that end. Maybe this suggestion could help you some.
I’m on FB if you would like to message me about any of this. Take care and I hope you get settled back into home quickly. God bless.
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You are all in my thoughts and prayers… Hugs for Tori.
And thank you… I am following your journey.
God Bless You.
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Hi Lesa – I am praying for you, your husband, and for sweet Tori. (and your whole family) You sure are a shinning light for Jesus! We are all lifting her up in prayer! We love you all!
– Jill Whitehead (Lori’s sister in law)
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I am a friend of the Saunders and have been following your situation and praying for you. If you have not already been contacted by the Hummingbird program at Hershey, please reach out to Nicole. They become your advocate for care and treatment and have so much knowledge of potential programs and treatment options and were an enormous help and support network for my niece when her daughter was diagnosed with SMA. Unfortunately we lost our Adi-Grace in December. Because we realize the heavy financial burden that families in your position face, we had a fund established in Adi’s memory with the Hummingbird program to help families like your’s financially. Please reach out to them. They are a wonderful support network of docs, nurses, and orther specialists that will help alleviate the stress of navigating Tori’s care. I have faith in God and the power of prayer for a miracle for Tori.
Blessings to all.
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Love her. Show her love. Love her with all you have. Trust and follow your heart through this. Your love for her will lead the way.
Those are the only things as a bereaved parent that I can share with you. They are no secret, but in some small way they are the answer. Just love. My son died of an incurable disease – multi-system organ failure as a result of Mitochondrial disease. We were blessed to love him for years and he taught us so, so much about life, love and faith in his short life.
So, as you look at your sweet girl and wonder what is to come – stop. Just love her. Every second of every day that you share together. That is all that matters.
Praying for your miracle, your hearts, for peace. With much love.
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