Unexpected chaos

So we have the follow up MRI scheduled for June 11th to find out if the setting adjustment has worked to minimize or get rid of the subdural hematoma. Little Man had an appointment with the neurosurgeon office last week and since he is showing behavioral symptoms or shunt malfunction but there hasn’t/isn’t a malfunction they want him to see a neurologist. I kind of thought the office was one in the same but apparently the office visits we’ve been to are just neurosurgeon visits. Anyway, we got an appointment with a neurologist scheduled but we had to first schedule an EEG to be done before the neurologist will see him.

What on earth do I expect for an EEG for an hour for my 16 month old? It’s scheduled during his normal nap time which they said is a good thing. But if he’s all hooked up to wires I don’t think he’s going to go to sleep as easily as normal if at all. They said it will last an hour but is that in the door and out an hour later or is that the time for the test itself? I have a million questions I want to know.

Has anyone else been through this? Any advice or help with what I can expect?

Subdural Hematoma

Little Man has his MRI yesterday. My concern was his shunt was under draining…. I was wrong. We got some good news, his ventricles have stabilized since he was over draining. The bad news, the subdural hematoma that was caused by the over draining we found in March has also stabilized. It is the same size as it was just over a month ago. Since he’s been falling a good bit, there is also some new blood showing up in it. We were told that hitting his head having the subdural hematoma can cause more bleeding than if he didn’t have it. Little Man has never had a seizure. I know with having Hydro it’s more of a possibility, but she said having the bleeding from the falls to keep an eye out for seizures.

My poor little guy has been through so much and it seems like he can’t catch a break. Yet, he still smiles, laughs and remains the happy boy he is. When he has his moments you can tell he doesn’t feel good it hurts to see him like that. He is such a tough boy.

They bumped his setting up from a 5 to 6 hoping this will help getting rid of the subdural hematoma. We go back in 2 weeks if he’s not back to himself still and having his fussy, grabbing his head, not sleeping good times. The plan is to possibly bump it up to a 7 then and then wait till his next MRI in 4-6 weeks from now to see what’s going on.

Little Man doesn’t do so great with setting adjustments. The change makes him crankier, changes his sleep (he took a short morning nap before the neurologist appointment and still took a 3 hour afternoon nap), and it seems to just bother him overall at times.

I pray that this resolves itself, I’m pretty sure based on a little research that if adjusting the setting doesn’t fix it he will end up having another brain surgery. I’m not ready for another surgery, not that I ever will be. He is so close to making it a year to his first shuntiversary, and I know not everyone makes it that first year but I am really praying he does.

Praying over the next week or two he gets better and his subdural hematoma goes away. Will be back with updates on Little Man.

Mommy Instincts

So we had our visit to the ER from throwing up which led to the discovery of Little Man’s shunt over draining. They bumped the setting up from a 1 to a 5, which we felt was a drastic adjustment. After some talking we understand that was a necessary adjustment to prevent the brain from collapsing any more.

Two weeks ago we had 3 nights in a row that he slept all night! That hasn’t happened since last year when he was sleeping all night every night prior to his shunt being adjusted from a 2 down to a 1. My gut says it’s related, so having those 3 nights and then getting back to waking up crying I can’t help but feel that for those 3 nights the pressure in his head was where it needs to be. Now since the pressure has been building back since the adjustment, assuming I’m right and it hit its “sweet spot” now it’s getting to be too much pressure. He seems to be getting right back in to more fussy times, waking up crying, and not always acting himself.

He even had one night it was so bad poor guy was screaming crying and holding and grabbing his head on and off. To me it seemed like he had a headache.

My mommy instinct says his setting needs to be dropped down, preferably one setting at a time, until we find that sweet spot again.

We had set up a neurologist appointment to discuss this for this morning and his 15 month well visit was scheduled for this afternoon. With terrible timing over the weekend he started with a runny nose and by end of day yesterday he had goop building in his eyes as well as a possible fever (turns out our thermometer isn’t in sync with the doctors office so we no longer trust it).

At the neurologist appointment we went over our concerns and explained his symptoms of pushing/digging at his right ear, starting to have balance problems at times, grabbing at and holding his shunt. A few nights ago he woke up screaming and holding his head like he had a headache and Motrin was the only thing that worked to get past that. The PA said a lot of it sounded like it could be from an ear infection so they wouldn’t adjust his shunt and wanted to wait until he saw his pediatrician before deciding what to do. She said if his ears are good then they will probably bump up his MRI which should be in 3 weeks to possibly next week.

Well, at the pediatrician his lungs sounded good, he does have some cold symptoms of runny nose and eye discharge but HIS EARS LOOK GREAT. No fluid, they are perfect. To be honest I was kinda hoping for an ear infection. It would be easier to handle knowing what it is now and treating now. Instead I have to wait till morning when the neurologist office opens to call and tell them his ears are fine and figure out when they can see him again and get this all figured out.

I feel like this year is going to be a tough one with his shunt. I just pray that it is all setting related and he doesn’t have to have another brain surgery.

I’m so upset, annoyed and frustrated that they didn’t listen to us or take us seriously. They say that the pushing and digging at his ear is a sign of ear infection but both times he’s been to the pediatrician when doing that his ears have been perfectly fine.

There’s a thing on Facebook with Mother’s Day coming up about mom fighter. Moms with kids who have Hydro, fighting for their kids, being there to support them. I feel like today I didn’t fight hard enough, I have to be his voice and I don’t feel like I spoke loud enough.

Right now I’m frustrated with myself, feeling like I didn’t do enough and with the neurologist PA for not understanding.

Shunt Over Draining

We had our follow up appointment yesterday from our trip to the ER when we found out Little Mans shunt was over draining. They adjusted his shunt from a 1 to a 5 while we were there. Today we got to sit down with his neurosurgeon and get a better understanding of everything. Since his shunt has been over draining, his brain started to collapse. He showed us images of the CT scan from his ER trip pointing out where the dark areas(fluid) between his brain and skull was caused by the brain collapsing.

Seeing that image it really sunk in. Little Mans brain had started to collapse, we don’t know for how long and we had no idea it was going on. Hearing about Hydrocephalus and excess fluid on the brain to someone might not seem so scary when it doesn’t effect them, but realizing complications like someone’s brain collapsing might put it into better perspective on how dangerous this condition can be.

Luckily adjusting his setting has led to improvements. The neurosurgeon said that there was a 50/50 chance this would work and if it hadn’t have then yesterday we would have been scheduling surgery. The MRI yesterday shows that on the right side of the image there is barely any gap of white/fluid (backwards colors from his CT) between his brain and skull, the left side of the image is better than it was but still needs improvement.

We are so glad that adjusting his setting has helped and hope it continues to do so without the complication of pressure building too much. We go back for a follow up MRI and neuro appt and I’m nervous he might still need surgery. As a parent never seeing this before my brain is thinking if one side improved so much why didn’t the other, will it continue to improve or will he need surgery? I know the day will come when his shunt will need to be replaced. I just pray it’s so far down the road that by then there will be a better option. With this over draining complication this is a different surgery.

I don’t think a day will ever go by when I don’t worry about when he will need brain surgery again. I don’t think about it all day long but there’s always that worry in the back of my mind and when he does something that may be a sign it brings that worry to my immediate thoughts.

Are you the parent of a Hydro Warrior?

What are your worries?

Our First Shunt Complication

I really need to start trusting my gut more. My concerns about Little Mans not sleeping through the night being shunt related were probably right. After dealing with it for months and other things progressively seeming to worsen we found out his shunt was most likely the culprit.

Last night about 1030 he woke up fussing but didn’t put himself back to sleep like normal. Figured dirty diaper so checked and that wasn’t the case just a little wet. Changed his diaper then put him back down and pat his back to help him settle back down and he ended up vomiting. We got him cleaned up and changed, sheet and blanket changed out and went to try to put him back to sleep again. Same thing, round two this time we gave him a bath rather than just wiping him down. He ended up throwing up a third and fourth time within the hour. By the second time during his bath we were questioning going to the hospital to be safe and check his shunt, after the third time it was decided.

We headed to the hospital just before midnight and the whole ride I was so worried he was having a shunt malfunction and would need surgery.

Went over everything going on and they did a CT and x-rays. After waiting for results for over an hour someone from the neurology department came in and let us know his shunt was over draining. I’m so grateful that he has a programmable shunt, they adjusted the setting from a 1 to a 5 (on his 1 is draining the most, 8 is draining the least) right there. He was being admitted for monitoring and received an IV for fluids since they had him as not allowed to eat or drink at first.

He was definitely not himself, part I’m sure from being up most of the night and being poked and prodded. Poor guys heart rate spiked so high when he got his IV it took everything for me not to cry while he was screaming his lungs out. Luckily my husband was there to help hold him because not doing well with needles I started to get light headed. It was the start to a very long day.

The rest of the day he slept on and off, had to fall asleep in my arms since laying down he would move and get caught in cords. He was given the ok to try eating breakfast around 830 and did fine with milk and Cheerios.

I don’t remember exactly what his neurosurgeon said when he came in to check on Little Man but I will have to ask at his follow up in 2 weeks. It was something about the over draining leading to small droplets of blood from the tissue pulling. After having time to process it has me wondering more questions. What damage can this blood cause and what are the chances? Can it clog his shunt, how likely is that? Is it brain tissue damage or other tissue?

Another concern is what is it going to take to get the setting right? He had been at a 1 for almost 6 months and we had no idea he was over draining so how long will it take to get it right? They said now that he’s older and skull is more fused together it has changed the pressure from when he first got shunted. So I’m afraid it’s going to be a guessing game of trial and error until we get the right setting and no idea what kind of stress that puts on Little Man. His waking up crying during the night could have been his way of telling us something was wrong and we had no idea. Until he can tell us what he’s feeling it’s that much harder to know what’s going on.

To all the parents of hydro warriors I say trust your gut. I’ve read it and heard it, but then when asked or brought up his sleep issues was told it was probably a sleep regression or he just needed to be sleep trained. After all that my concerns were legit and I pushed them aside not wanting to be the over paranoid parent. You know what, as hydro parents we have that right. We need to be over paranoid that any little thing can be a sign or symptom we need to look into. Don’t make the same mistake I did and let it continue until something else happens. Check it out.

Well, for right now that’s all I’ve got to share. I’m exhausted and hope we all sleep good tonight. Thanks for taking the time to read this.

Sleep Training Results

So it’s been awhile since I’ve posted. Our first round of attempted sleep training failed. One thing we seem to have learned is our boy does things when he’s good and ready not when we are. It probably didn’t help that while attempting this the first time he ended up catching hand, foot and mouth disease. We gave up but a few weeks ago tried again. This time it went much smoother and was a success. We no longer cradle and rock him to sleep. He gets pjs on, teeth brushed then curls up with a giant stuffed elephant on our bed for bedtime stories. After his final story we lay him in the crib, pat his back for a few minutes until he starts to fade, then he’s on his own falling asleep the rest of the way. It only took I think 3 or 4 nights before it went perfectly smooth, but those first nights were not bad and nothing compared to the first time we tried to break the cradle and rock to sleep habit.

Sometimes if at first you don’t succeed take a break before trying again. Some kids don’t do so great when forced to change things when they aren’t ready. Mine is one of those and has proven that a few times.

He still is not sleeping through the night, however we don’t have to get out of bed unless he can’t locate his binkie then we just put it in front of him and walk back to bed. I am either just being paranoid or maybe I’m not and I am right or maybe I’m just crazy but I think him not sleeping all night is shunt related. He has an MRI and a follow up with his neuro next month and I plan to bring it up.

Night 3, back to the old

After the battle for his morning nap and the fact that he doesn’t seem to be feeling well, I decided for his afternoon nap I was going to let him fall asleep in my arms. He needs some decent sleep that isn’t a fight to start. If he is getting sick lack of sleep and getting all worked up isn’t going to help him. I scheduled an appointment with his doctor tomorrow and hope he doesn’t have an ear infection.

Back to the sleeping…. my husband made a good point to me. Little man has always done things in his own time, even when we push for them sooner. Crawling, no matter how much we tried working with him to crawl he wasn’t having it. Since he was slightly behind with crawling and pulling up it was recommended to do physical therapy. The week before we started, he decided to start crawling. Basically he doesn’t seem ready for this so why push it?

We have decided now is not the time for us to try this method of changing his sleep. Holding him until he falls asleep is much less stressful for all of us than the fight we have had the last 2 nights.