{i love this boy}
No surprise, Jack spent another day at home with stomach pain. I put in a call to talk to the GI nurse to see if we can have him seen. While she had her nose in the computer going over other stuff, I asked her to look at his EEG results and tell me what it said. She was reluctant, did some stuttering and said, I should wait to hear from Dr. Saneto but I forced it out of her...
she said it read, ABNORMAL.
My heart sank...even though I knew this might be coming someday, to hear it literally made me sick to my stomach. All I could do was cry...why does this cruel disease have to take his brain now?
I dont want to talk to anyone, I just feel pure sadness, breaking in tears everytime I look at his beautiful face.
SO I guess "no news is good news" doesnt always holds true. Its been 2 weeks since his EEG. Two emails later I finally got a response today from the Mito nurse, only saying she forwarded my emails to Dr. S. Maybe he will call me soon.
The "bladder incontinence" seminar last night was just what I thought, for "typical and healthy" children, not for complicated kids. So I sat through 2 hours of "watch for wiggling", "how to potty train your toddler", "how to position an obese child on the toilet" and much more of the same. But I did get a chance to ask a question via satellite to the Childrens Urologist giving the seminar and she said that Jack needed to be seen. Saying first she would like him to have a renal ultrasound to check his kidneys. So thats in the works.
Pulmonology called yesterday to tell me that his Pulmo wanted to see Jack this month rather than wait for our sleep clinic appt. in June to go over his sleep study results...Im guessing that isnt exactly a great sign either, sigh.
I just feel like our little boy is falling apart right before our eyes. The stomach pain, all the unexplained sleepiness, worsening hypoventilation, bladder/bowel incontinence and now possible seizures. Obviously I dont know what the EEG revealed, maybe it just showed that he is "only at risk" for seizures, but it doesnt really seem to matter...this is progression, thats what hurts.
One day at a time, one day at a time.
HOPE
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12 comments:
Heidi-
I actually think it could be "good news". Seizures would explain all the sleepiness and quite possibly the incontinence. Starting meds could make a big difference in his quality of life.
Hang in there,
Ali
I'm so sorry you aren't getting quick answers for this. Hopefully, like Ali said, the EEG can provide some insight and there is something that will help Jack with the other issues.
Can I just go back to your last post that I was going to comment on something like, "If things are staying the same, I'll take that kind of boring." Dang! I really like boring more than I like these kinds of changes. :( Not that the sleepy episodes were good, just, well, I think you understand. Anyway. I am sorry. I hope that your appointments will help you get things organized with addressing all of it, and hopefully the abnormal isn't too complicated. We've had abnormal that sounded scary but in the end was just one more thing to sort of watch and keep an eye on but nothing too scary. I'll hope that this will be the case. I'd rather see boring. ;)
Dear Heidi,
My heart absolutely shreds for you tonight, my sweet warrior friend. I am so sorry you are feeling so sad, so defeated. I am just so sorry. Maybe it is good news....an explaination of some of the symptoms, but it still brings more issues, labels, scares, etc.
Much love and many, many prayers,
CL
Hugs friend....just hugs.
Oh Heidi, I'm so sorry. Praying for sweet Jack and for you. Lots of hugs.
Heidi....I am speechless...and sick...
Whatever is going on neurologically, I am praying it will be nothing that can't be helped...Jack is a bright, beautiful boy....that will never change!
You are in my thoughts and prayers....please know I am here...
I am so sorry about the profound sadness and defeat you are feeling, as well as everything that your sweet Jack is going through. I will continue to pray for Jack, you and your family. God bless you all.
The seizure activity would explain allot even though it is devestating to think of another thing mito is causing. My little guy is 2 and a half he has what we thought was simple issues it is now looking like a complex case of mito. We are in oregon trying to get out of state treatment to head to seattle childrens. Just know your in our thoughts and prayers. Thank you for sharing your familys journey it has helped our family and bring awarness.
Hugs
Tiffany Reed
I'm sorry! I hope they give you the official report soon. KayTar has had a couple of mildly abnormal EEGs (diffuse slowing), but never caught actual seizures.
I'm so sorry Heidi. Thanks for being honest. It is so hard to try to find answers for these things when you know that the underlying disorder is ultimately to blame {wether it be mito or progeria} I cannot imagine many things worse than progressive disorders in children. Maybe its just because it is happening to me but it seems impossible to accept something when in the back of your mind you know the worst is yet to come. Sorry for joining you in your misery rather than boosting your spirits. All this to say that I get this and I am sorry. There are few who can truly understand what it is like to be a parent of a child with a progressive disorder.
Oh man, I am sorry. I know this has been a worry and fear for a while now. I hope, if siezures are it, that he can respond to treatment and it can make it so he can have more energy through the day and sleep better at night. You are a great mom and I'm so sorry you are seeing these changes in your sweet, beautiful boy.
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