I thought I would take a second this morning to be more specific about some things with Levi, as it seems like "where did this all come from all of the sudden??"
Something that I have learned as Levi's momma is that there are things I am always "tracking" which is like a blessing and a curse type of thing....as you can imagine to a little boy when mom is ALWAYS asking "are you feeling ok buddy?" he is kinda a the point where he is like "I'm FINE mom" lol...Sorry little dude I just cant help it ;)
We have been fortunate the from the time Levi has been able to talk well at the age of 15 months ish he's always told us when something doesnt feel right (so obviously I really dont need to ask all the time lol) so for example he would tell me his head hurt when he was 2 , and I would track it because I thought, this poor 2 year old expressing this so often is strange...so after my season of tracking and symptoms getting worse and dr's saying "he probably can't tell you that at his age" lol we wound up with a new shunt for levi.
So something that I know even beyond the need of always a new shunt are things like levi gets headaches here and there...but he's also been very healthy in all other ways, really never had the flu or been sick past a runny nose praise the Lord.
The last few weeks he's been a little off with a few things that you could say..hmm could be normal kid behavior..but then when you see patterns then you start to wonder whats up..
-Falling a sleep on bus every day for the last 2 weeks (only a short trip) and again, so not a big deal
-telling me his neck hurt a few times a week
-telling me his head hurt a few time a week
-gagging (which I was thinking, oh maybe from a runny nose)
----
-Then more frequency
-head/neck pain daily...
-more frequent gagging
-crying about everything
At this time I started giving him some doses of myralax because he can
occasionally get constipated and that can interfere with shunt... so i thought
I would make sure that wanst the issue
----
then by the end of this week it turned into
-throwing up whenever he would cry,cough,go from laying to upward
-head and neck pain more intense
Then the myralax kicked in which was in a pretty "powerful way" lol
So then i think he got dehydrated pretty quickly
which is why then he wasnt keeping things in his body...
and in the meantime he was just very still and had tired
This a list copied from a website for signs of a shunt problem...
- Headache. This is a headache that increases and gets worse over time.
- Throwing up (vomiting) without cause.
- Feeling more sleepy than normal.
- Irritability.
- Babies or young children who cannot speak may become increasingly fussy.
- Young children who can speak may become increasingly whiny, grouchy, or impatient.
- In infants less than 1 year of age, the head may start to get bigger.
- Personality change.
- Vision change. This may be blurry vision, double vision, or loss of vision.
- Swelling of the skin that runs along the VP shunt path.
- A bulging, soft spot on your child's head.
- High-pitched crying.
- Feeding problems or refusing to eat.
So as you can see this was pretty standard shunt paranoia for me...and the added myralax although was probably a good move, added the dehydration (in my opinion thats what it was anyways)
So had the CT scan yesterday and shunt series Xray
Gloria said that the ventricles seem to be at an ok size, but doesnt mean that its not shunt entirely..
So we are going to start a medication 3 days on, 3 days off, 3 days on...this medicine will produce a little bit less cerebral spinal fluid on his brain and see how he feels and if the days are quite different when on vs off we will make a magnetic adjustment to the setting on his shunt which is ideal because it most likely wouldn't be a surgery but I suppose it still could be also...
BUT
The other information of
Neck pain, headaches, gagging, and the change in his gait this summer also all points to something going on with a possible tethering of the spinal cord...where scar tissue is pulling down/attatching on the spine,nerves causing change in function or pulling the spinal cord down which puts pressure on other things including brain...
So we will have an MRI in the next few weeks of his entire spine to check this out...and my gut tells me this is what it is ,and same with the Dr.... Levi had a spinal cord tethering when he was 10 months old because its a good surgery to do when you do a Chiari decompression which he was also having...and unfortunately with spina bifida or possibly other spinal surgeries (I believe) you may have repeat tethering..... probably at the sites that he has had a surgery in the past...so it would be most likely on his neck...or lower back.
The one he had when he was young was at his lower back...I'm concerned this one is at his neck but I dont know so I will try not to worry. But obviously things become more dangerous when your dealing with the brain/spine area..so we can pray about that! We have an amazing Neourosurgeon Dr. boaz...he is just fully confident but its also a very delicate procedure.
So there you have it.
We just dont know whats up yet....BUT the good thing is that he's been feeling a little better and hasn't thrown up since sunday...his tummy is still hurting, and he is still gagging and some headaches,and seeming to cry about more than usual... but I feel like there were some things in the mix of all of that, that made it confusing what was what.
In the meantime..we are doing ok! He is generally doing just fine now, playing, going to go back to school today...but he's on the radar for something and we are working on figuring it out.
if I were to say best scenario...maybe this medication works and takes away the headaches and we magnetically adjust the setting on shunt..at least he would feel a little better...I think thats the best case but it has to be trial and error first.
Specific prayers
No tethering Mri doesnt show anything major
that he continues to eat and drink
overall for his health
also we are just in a quite busy season for our family, and also have a few things
ahead. So just wisdom about all of that and balance with all we are dealing with.
We are thankful that although as we look back at this week which also had several other non levi related circumstances, we can praise God that we had a peaceful week and many sweet moments with each other, it was busy but we never came unglued. I'm so thankful for that provision!!
Thank you friends
Bethany (and Mike too ;)
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