Wine in hand - everything's gonna be alright
I walked in the door late tonight - almost 8PM - and said "I'm gonna pour myself the biggest glass of wine right now." Imagine watching your child become paralyzed on one side of his or her body overnight.... or cross-eyed... or incontinent... or unsteady when walking... I know that Ty is not a perfectly healthy child but every time I am faced with this stuff, it is still equally stressful. For Lou, too. He was cursing his head off this morning when I had to go to the hospital today because he couldn't come with us.
I am over-the-moon happy to report that Ty should be fine. It turns out that his shunt needed to be reprogrammed. When we left the hospital after his MRI and chemo on Monday, the team didn't reset the valve. The shunt has a valve that is magnetically activated, so when he is getting magnetic imaging (i.e. an MRI), the settings can be compromised. That was exactly what had happened on Monday. When they checked it today, the shunt setting was 1.5. The maximum setting is 2.5 (which means it's virtually off) and the lowest setting is .5 (which means it is virtually open). Ty is always at .5, so to be set at 1.5 for more than 24 hours triggered NPH - normal pressure hydrocephalus.
"NPH can occur without a known cause, or it may be caused by any condition that blocks the flow of cerebrospinal fluid (CSF). The fluid-filled chambers (ventricles) of the brain enlarge to fit the increased volume of CSF. They press down on and damage or destroy brain tissue." (I pulled this desription from a website, http://www.nlm.nih.gov/medlineplus/ency/article/000752.htm).
So, bottom line, Gramps should be just fine. It may take 24-48 hours, but as long as the shunt was, indeed, the source of the complications... then he should be back to his normal self soon. I am jokingly calling Ty "Gramps" because NPH is something that typically occurs in older people. When we were discussing his symptoms; incontinence, lack of balance, glassy eyes and lack of mental focus, I felt like I was describing a Grandpa. His doctor agreed and said it was probably normal pressure hydrocephalus which is much more common among the elderly. God willing, he is right. The shunt adjustment should fix everything. I will keep you all posted. In the meantime, thank you so much for being so concerned for our special boy. We are beyond grateful for having each and every one of you in our lives... Your support means everything.
For a change, I think the good news and the wine will help me to sleep well tonight. XOXO from Ty and the rest of the Campbell family. Back to preschool with Ty tomorrow, Gavin on Friday.
I am over-the-moon happy to report that Ty should be fine. It turns out that his shunt needed to be reprogrammed. When we left the hospital after his MRI and chemo on Monday, the team didn't reset the valve. The shunt has a valve that is magnetically activated, so when he is getting magnetic imaging (i.e. an MRI), the settings can be compromised. That was exactly what had happened on Monday. When they checked it today, the shunt setting was 1.5. The maximum setting is 2.5 (which means it's virtually off) and the lowest setting is .5 (which means it is virtually open). Ty is always at .5, so to be set at 1.5 for more than 24 hours triggered NPH - normal pressure hydrocephalus.
"NPH can occur without a known cause, or it may be caused by any condition that blocks the flow of cerebrospinal fluid (CSF). The fluid-filled chambers (ventricles) of the brain enlarge to fit the increased volume of CSF. They press down on and damage or destroy brain tissue." (I pulled this desription from a website, http://www.nlm.nih.gov/medlineplus/ency/article/000752.htm).
So, bottom line, Gramps should be just fine. It may take 24-48 hours, but as long as the shunt was, indeed, the source of the complications... then he should be back to his normal self soon. I am jokingly calling Ty "Gramps" because NPH is something that typically occurs in older people. When we were discussing his symptoms; incontinence, lack of balance, glassy eyes and lack of mental focus, I felt like I was describing a Grandpa. His doctor agreed and said it was probably normal pressure hydrocephalus which is much more common among the elderly. God willing, he is right. The shunt adjustment should fix everything. I will keep you all posted. In the meantime, thank you so much for being so concerned for our special boy. We are beyond grateful for having each and every one of you in our lives... Your support means everything.
For a change, I think the good news and the wine will help me to sleep well tonight. XOXO from Ty and the rest of the Campbell family. Back to preschool with Ty tomorrow, Gavin on Friday.
I am so glad it's something minor but how do you not get angry with the team who didn't reset the valve and in return have this little boy go through things he shouldn't have gone through? I am sorry for being negative I just think it's so unfair for him to have to go though unnecessary pain or unnecessary changes if it can be avoided. I will be saying prayers for you and Ty and the rest of your family! I will also say prayers for the medical teams to be thorough and precise. You are truly amazing!
ReplyDeletebridget-baltimore md
Hoping that the shunt adjustment does the trick. Keeping Ty and all of you in our prayers as always. And BTW, love the new pic of Ty at the top of your blog. Keep fighting, Ty!
ReplyDeleteSo glad to hear the good news. You , Ty and family are in my prayers nightly. I hope you sleep well.
ReplyDeletePrayers from Texas,
Robert
:)
ReplyDeleteJoy Marielle
Baltimore Md
I fell asleep wondering about Ty and woke up to today's post. Such a relief I'm sure.
ReplyDeletexx from Canada!