What is Hydrocephalus?

So many are unaware. Hydrocephalus is a scary and life changing diagnosis. Google can only take you so far. And actually it's best to stay away from Dr. Google. This I have learned since finding out about it.

Michelle was just 4 days old when we got a phone call from the NICU team asking us to come in and meet with a team of doctors to go over some test results. I can remember this day perfectly clear. It was the second worst day of my life. And I am sure it will always be. Sitting in the "fishbowl" looking out through the windows with a perfect view of her incubator and monitors listening to the doctors tell us that Michelle's brain hemorrhaged an was continuing to do so. That after a routine ultrasound on her brain they rushed her to Cat Scan to get a better picture of what we were dealing with.

They passed around a lot of terms that I didn't even understand at the time. And to this day there are still a few that will most likely I will never understand. In the end their words were clear, Michelle would be diagnosed as a patient who has Cerebral Palsy. They went on to say IF she made it over the next 72 hours that she would most likely be blind, deaf, and severely impaired in more ways then one. That she would require a feeding tube if she didn't get the reflexes down. That she would most likely be in a wheel chair and would never walk. The only good thing they said was that she was moving her left side.

The right side of her brain was the side that took the most damage. She had a grade 4 Inter-ventricular Hemorrhage on the right and a grade 1 on the left. She was still reguiring oxygen and was given 4 blood transfusions to help her body replace what she was loosing.

They said because of the bleeding there appeared to be blood clots blocking the ventricals in her brain. What that meant was the normal flow of cerebral spinal fluid was blocked. Kind of like when you kink a hose of sorts and you watch the water just build up looking as though the hose would burst. This was happening inside her brain causing her ventricals to swell and put pressure on her brain forcing it against her skull. They said we will watch and wait and if need be she will need brain surgery to help relieve the pressure.

We waited for 17 days. The morning of her 21st day the phone rang very early in the morning. It was a man I had never spoken to before. He said his name was Major Mark Melton with Madigan Army Medical Center and that he was a Neurosurgeon. He explained that over night Michelle had become extremely lethargic and was vomiting and another Cat Scan of her brain showed 3 times the amount of CSF (cerebral spinal fluid) that was there just a few days before. Her head had expanded so much during the night that they had 6 different staff members check her head circumference.  He wanted my permission to take Michelle to surgery and place a reservoir that they would take fluid off of daily until she was the appropriate weight to withstand a shunt.

I remember being frantic, driving with no idea how fast I was going and literally yelling at some poor guy from Shawn's unit to find my husband and get him to the hospital where our daughter was. When I got there she was gone. They had already taken her to surgery. I remember I almost broke the NICU doors in my frustration to just get out of there. Some poor social worker followed me and I unleashed on her not meaning to.

I had read about Hydrocephalus. The outcomes for so many were not good. A lot of patients didn't make it. Michelle had already been through more in 21 days then most people in a lifetime. I kept thinking, how was she going to overcome this? She came back to the NICU pink and full of life. They had taken so much fluid off of her brain the surgeon said a shunt would be 100% necessary when she reached 5 pounds. She had barely just gotten back to 3. We had a few long weeks ahead of us. Everyday they measured her head and everyday they took fluid off this little bubble and sent it off to the lab for cultures and each time her head circumference would shrink back down within a few hours.

When she was 63 days old she got her first ventricular-peritoneal shunt or VP shunt as many call them. She came home a week later. I felt like I didn't know anything about anything and here the hospital hands me this tiny human and says she's yours. I kept thinking what the hell am I going to do? How is this going to affect us all now that she is home?

After another week long stay just a few days after coming home it appeared Michelle had a virus and developed Epilepsy. Something they said generally happens in patients with any type of brain trauma. And there was no getting around that Michelle's was a BIG trauma. For weeks I took her back and forth to the pediatrician. For weeks they said she had colic. For weeks she puked on me, cried non stop and neither of us got any sleep. Finally we went to check in with her Neurosurgeon. He took one look at her at a glance walking by us and said we were getting admitted that it was clear her shunt wasn't working.. Wait what?! How does it just quit? How dare it!

What was supposed to be a 45 minute procedure dragged in a 4 hour surgery with no update. At 4 hours they finally called me to tell me that she was still in surgery and that she had a massive infection in her abdomen and it had spread up the shunt tubing to her brain. She spent 21 days getting antibiotics and had to have her shunt removed and her CSF drained into an external bag. They were finally able to reinsert the shunt and we went home 2 days later.

No more then a month later Michelle's shunt malfunctioned again. This time we spent less then 24 hours in the hospital and she was fine. We went another 4 months before Michelle needed another revision.

The Marine Corps decided we needed to move down to California from Washington state. When we got here I got the biggest eye opener into the world of Hydrocephalus. We met Dr. Hal Meltzer when Michelle was transferred from Balboa Medical Center to Children's Hospital in San Diego. It was still months before I really understood what we were up against. Extensive therapy, OT, PT, Speech.. The works!

Michelle went malfunction free all of 2007. In 2008 she had multiple revisions resulting in her getting 2 shunts instead of 1. Her hydrocephalus was becoming extreme. And not in a good way. In 2009 she had even more. In 2010 she had 4 within a week. She was revision free for almost 3 whole years until January 2013.

In January Michelle was diagnosed with even a more severe form of Hydrocephalus, Slit Ventrical Syndrome. She needed a shunt revision and had to get 2 in less then 24 hours. She was lethargic, vomiting, seizing, and everything else that goes along with it. Her heart was all over the place. She had shallow breathing. She was a MESS. The second revision was more of an emergency then the first. She was completely non responsive and her right eye was deviating to the right while her left stayed perfectly straight. It took them no less then 30 minutes to have her to the OR.

Things were OK for a few weeks. Until last weekend. Things became bad. She was showing signs again of shunt malfunction and I rushed her to the ER. We were admitted into PICU and didn't leave for 9 days. Michelle required a cranial vault reconstruction to help treat her Slit ventical syndrome. We now know she also had Craniosynostosis. This surgery has proved to be exactly what she needed. Were it not she would not have gotten better.

We face the unknown all day everyday. We prepare for the worst and hope for the best. When and if we ever go on vacation we have a list of doctors and the route to the closest medical facility that can treat her. We go to doctors appointments almost weekly. Therapy is weekly. Medications have to be given to prevent constipation. To keep the bowels from pushing up on her shunts so fluid can flow freely.

Hydrocephalus is a scary and unknown condition that doesn't have nearly enough awareness behind it. Millions suffer from it. Many are shunted and many are living with the possibility of needing a shunt at any point in time. There is no CURE, no fix. Just treatment. The treatment is the same each and every time. Brain surgery.

Brain surgery. That's it. Nothing less.

I wish I could go back and cross my legs and sit in a bed for 4 more weeks so as to give her brain more time to grow so as to not be so fragile. I wish there was a cure so that not only Michelle but MILLIONS of others would be able to OVERCOME this. Hydrocephalus occurs 1 in every 500 children born.. There are different forms.

Acquired (developing after a trauma)

Congenital (being born with it)

Normal Pressure Hydrocephalus ( Occurs in the elderly)

For more information and ways to help support a cure visit here or here.

That is what Hydrocephalus is. A huge learning process and things are changing all the time. There are different types of shunts. There are millions living with it and have never even had a surgery to help relieve the pressure. I am beyond thankful that Michelle has received the treatments she has. Her Neurosurgeon has time after time saved her life. All of the doctors and nurses are a god send. Who knows maybe some day someone somewhere will find a cure and no one will ever have to have another brain surgery due to Hydrocephalus.

Hydrocephalus
Craniosyostois
Epilepsy
Cerebral Palsy
Normal pressure hydrocephalus

Cranial expansion surgery post op day 3

It never ceases to amaze me how resilient Michelle is. Honestly I admire her. Kid has some strength and will. Not to mention a personality that literally draws you to her no matter what. She is one of those kids that you love with all you have and she loves you twice as hard.

She did great last night. Was waking me up to tell me she was wet, thirsty, hungry or uncomfortable or she needed her ice pack for her eyes. She's been eating really well today. They decided since she has been holding her own on the eating and drinking scale to discontinue her fluids so the only things we have that we use the PICC line for now are her antibiotics and her decadron which is being weaned down.

Remember how I said the drain was coming out today? Yea that didn't happen. Apparently there was A LOT of miscommunication in the Neurosurgery department today. Like in a way that her surgeon came by and talked to me, asked Michelle a ton of questions and put the order in to take the drain out that the resident needed to come do. Well he never did. As the day progressed we paged him and he didn't answer so we paged the on call NSG who said that none of them were at the hospital to remove it but someone would be there at 8 tomorrow to take it out. I am super annoyed by that and here's why, we made a HUGE effort today to prepare Michelle for it. Child life came in and told her what they were going to be doing, explained every detail to her. She was okay with it. Actually looking forward to it. And then we had to tell her that it wasn't happening today because people cannot communicate. So disappointing. 

Here's some BIG news, her eyes are beginning to open. We see a huge improvement each time we use an ice pack on her. She even touch my nose and her daddy's hat. That is a BIG step. The dr said that she has to be able to open her eyes, pass her neuro exams, eat, drink, and have the drain out. So we should be home very soon. I know he is concerned because this is Michelle and she has her own plans and schedule but I told her today that were gonna try a different one for forever. She said that was okay because she didn't want to come back to the hospital.

It has been nice though. A lot of the nurses who took care of her when she was a baby obviously haven't seen her in a while since she had some really good years where she was well, but have been stopping by and saying hi and even some of the PICU team who took care of her last time have made a point to come over or in when they are walking by. 

I almost forgot! PICU signed off on her so she is no longer on their service! So now to get neurology and neurosurgery to let us go home.

Cranial expansion surgery post op day 2

Today has been awesome. Like really awesome.

We moved out of PICU late this morning. Michelle has adjusted to the step down side ICU very well. She's also enjoyed her morphine really well today. Were working on that one. Less morphine more tylenol.

So far she has been able to stay off the hypertonic saline and her sodium levels are stable. After we let the morphine wear off this morning she became a lot more responsive and willing to do some of what we were asking her. Like eating ice chips. That's a lot better then what we were doing this morning. I am pretty sure her lips were really sticky from us just trying to get her to take a sip of something. And eating was beyond out. Now as a matter of fact she is hungry and is waiting for her food to arrive right now.

She absolutely hates the ice packs. Like to the point she actually threw a fit over them earlier and made the monitors see red and scared her nurse. Luckily she calmed down and let me put them on for a bit. Her right eye seems to have take the brunt of the swelling. Her left has actually tried and almost successfully opened twice today.

Tomorrows plan is to take her drain out. Still aren't sure when we may get discharged but Michelle is starting to return to herself.

Cranial expansion surgery post op day 1 Update #2

Things are moving QUICKLY. An what that means is, they removed the arterial line because Michelle's pressures are as stable as stable comes, the removed an IV from her left hand cause it clotted, and they removed the femoral central line in her pelvis.

She has come down A LOT on her morphine and tylenol need. We have been able to get her to wake up and talk to us. Most of the time it is for a good amount of time. She is eating and drinking and the nurse has turned her saline that is running into her PICC line down 5 times today. The next step is off. They are still keeping a close eye on her blood count to make sure she doesn't require another transfusion and her sodium levels since they turned off her hypertonic saline.

Everyone here is very surprised at the amount of progress she has made only being 24 hours post op. As of now her eyes are swollen completely shut. The Neurologists aren't too happy about that because they really wanna look at her eyes. But they are happy because some of Michelle's tone from her CP seems to be returning, which means she is regaining the use of all her limbs ( I would know I got whacked trying to help the nurse take out the lines). These are good things. Very good things.

My hope is to be able to move her out of the PICU by tomorrow. If they doctors don't think she is ready then they wont but they did say if they move her there will be a PICU nurse assigned to her for at least 24 hours more so that they can monitor her sodium and should it drop they can restart the hypertonic saline and move her back to PICU. They say the only way to get where you want to go is to put one foot forward right? So if we have a setback I am alright with that.

Let me tell you something I have learned about since being here. It's called Healing Touch. They have been having trained RN's come around and provide the service for Michelle. She's seem to respond very well to it. Before you break out your voodoo dolls take a breathe. Tonight she offered to do it for me. I said sure why not! Let me get a first hand glimpse into what this is all about. Well here's what its all about folks:

We all have energy about our bodies, were full of it! Both positive and negative. Healing Touch is about helping to rid the body of the negative energy. Through the power of touch and not touching they very amazingly help you to help the negative leave your body. I am not even kidding, she asked me if I have been carrying any stress or any pain and I have it's all been tension in my neck. After about 10 minutes I couldn't feel the tension. Look this stuff up and quit sticking me in the eye with your voodoo needles. This stuff works! As long as you keep an open mind to it you can honestly FEEL IT.

Needless to say I asked them to come back tomorrow to do another pain session with Michelle. And I will be taking a class on this ASAP. I want to learn. Look it up.

Cranial expansion surgery post op day 1 early morning update

Michelle had a good night. And by good night I mean two doses of pain meds and some tylenol along with some broth and Jello and about 5 1/2 hours of alertness. More then any of us anticipated.

Today the plan is to get her drinking more at least. Waking more. It seems like when we wake her up she is MAD. Not in a way because she is hurting but because her eyes are swollen shut now. There is a lot of swelling all of which we were told to expect. They want to take some of the lines out of her today. She's got two IV's in each hand, a PICC line in her arm and a femoral central line in her pelvic area which makes diaper changes a little difficult and an arterial line in her left hand. Oh and her drain that is helping relieve any fluid pressure changes in her head which isn't putting out much at all which I hope is a good thing.

Im scared to touch her too much. It's kinda like when she was in the NICU and they told me I could touch her that I wouldn't hurt her but I was scared to death that they were wrong and my touch would hurt her. I mean come on she's gotta be hurting right?!

They said we should be able to take the arterial line out maybe today and give her some meds to help more with the swelling since she hasn't been out of bed since Saturday evening. Her whole body is kinda swollen but with her face being the worst. The bruising has started. Daddy was teasing her about not boxing without gloves or something last night but she wasn't letting him get too far with that.

Hopefully we can get a real bed for her today and get moved downstairs to the medical unit versus being in the PICU (which is ridiculously loud considering its intensive care and these kids really need some rest). But if not I am going to push for them to get her a bigger bed. She is more comfortable that way and then we can cuddle her the way she wants to.

Her Neurosurgeons have come by already. All of them saying the same thing, that we will assess her headaches when she's more alert and isn't in too much pain.

Neurology isn't saying much just making sure everything is kinda doing what it's supposed to be doing or was doing before the surgery and before she declined so quickly neuro wise.

The PICU team is on board with all of that so I guess we are too. I just wish some of these meds could get stopped. But that will come with time. It's time since she had her meds that I wake her up and try and get her to drink something. Maybe we can keep her awake for a while so we can get a good neuro exam so some of the doctors will breathe a little bit.

Day of surgery.

So I am going to do my best with keeping everyone updated. It's hard for me to find down time to do this but here I go.

As I am typing this Michelle is snoring in the background. Such a sweet snore it is. Seriously as far as snores go hers I love.

We went from the PICU where Michelle has been since Saturday night to the operating room this morning. We met with everyone except the plastic surgeon. I honestly think we just missed him. The plan was to expand her skull and give her brain a little more room. Room we now know was very much needed. I got to walk her back and see her to sleep and then I met up with daddy and hung out waiting for the word from the Neurosurgeon that his portion was over.

Honestly it didn't seem to take that long before our pager went off and we were taken back to talk with him. He said his portion went very well and that she was doing very well. We asked all the "normal" questions and then went back out to wait some more.

About two hours maybe less passed and the plastic surgeon came out to get us. He went over what he did and that he was able to create the much needed space and that it appeared Michelle's sutures (think of the soft spot that everyone tells you they don't want to close too soon, well you have more then one.) in the front of her head had fused early but that she had plenty of room for her brain now. I let him know that a few years back we did do the cranial band for her because her therapist was concerned over the shape that her skull had taken on back then.

After that it was off to go wait some more. We hurried on up back to the PICU to go drop off a couple of stuffed friends of hers that I knew she would want if she were to wake up. After that we were lurkers in the hall just hanging around waiting to see her. It didn't take long for them to come down the hall with her. A quick kiss and they took her back to her room. We went and ate lunch and came back up to wait for her to wake up a bit.

Let me tell you those first words out of her mouth were music to my ears. I honestly didn't expect her to wake up tonight. I figured that it would at least be until tomorrow. She's been in and out for a few hours. She just had about a 15 minute window of alertness to let us know she was thirsty and she's been back to sleep ever since.

These are the things she has now let me know she doesn't like:

* Her eyes are almost swollen shut

* The face masks we got her are very cold

* She wants her super mummy wrapped head unwrapped and that it itches

* That she can't go home yet.

A little list of things in my book that can be fixed. Thank you everyone who has made it a point to call, text and follow along! The doctors are very happy with how she is progressing this evening and I just hope she is able to keep it up and her pain stays down!

I will update as I can!

This ones a ton of heavy information..

You know when things are just going more then fantastic and you just never have the thought of when the one terrible thing will happen?

Things have been great! I returned to work, the kids have been doing fantastic, they have been sick yes but we're all on the mend!

Now that I start thinking about it I see a few signs. The babysitter said one day Michelle seemed off to her. I mentioned to Shawn to just keep an eye on her and let me know what's up. She started being "normal" again. Then there was the tiring while walking. Walking is still so new for her I didn't even think it could be a sign. Then she was stumbling while crawling. Again it could just be because she was super active that day.. I shrugged it all off.

Monday...

Phone call from the school, Michelle was complaint of headache but seemed fine. So I said ok! Lets give her some water and call me back if she worsens. I was busy trying to get over a horrible cold that Abigail had given me. 30 minutes later changed I to the grabbing of a sweatshirt making a quick decision to not change the children's clothes and out the door in pjs we all went to get Michelle. This phone call was, she threw up, twice, seized on the way to the office and then again while waiting for me. I was busy arguing with the nurse to let me assess her first before calling ems. I get there and she's completely unconscious, barely responsive but is able to communicate.

I took her home. You know sometimes a seizure is just a seizure and its not really big business... Unless they continue. In the 20 minutes she was with me we had 3 more. A swift call for emergency services sent the fire department blaring sirens through our neighborhood. Michelle got a first class ticket to Rady Children's Hospital in San Diego.

Between fighting a head cold and trying to decipher what was actually being asked and what was being told in the emergency department is still a bit of a blur. A stat ct scan was ordered along with the normal labs and X-rays. Scan looked normal.... X-rays were fine. The only thing, her sodium was low by 4 points.

We got a first class ticket to PICU for seizure watch and shunt watch. First if all the PICU staff here is amazing. We've only been through PICU at balboa for all of an hour so this is a new trip for us. In Michelle's view its yay new friends!

Monday night was ok. Monday morning brought on whining, screaming, fits upon fits. We tried hypertonic saline to increase the sodium and hopefully rehydrate her brain a little, decadron to help any swelling that may be going on, keppra for the seizures and diamox for something I can't remember. After discovering a severe allergy to the diamox it was quickly discontinued. They noted no improvement with the exception of the seizures due to the keppra. Off to ct we went and then quickly to the or.

What came next honestly my gut already knew. Her shunt was blocked. Being cautiously optimistic I took this as a possible solution. Michelle woke after having minimal airway issues and quickly started eating and drinking. We managed to get discharged to the step down PICU here. Then things just went very quickly downhill.

Michelle quit responding. She started seizing. She started vomiting. Her vitals started falling quickly. The neurologist and neurosurgeons quickly noticed her right eye was deviating to the right, that got her a rush to the ct scan and angry doctors yelling at hospital personnel to MOVE!

Very quickly ct was over and we were rushed back to PICU. Neurologists wanted her hooked up to an EEG ASAP. Neurosurgeons were arguing thinking this was a seizure even though she wasn't having any clear signs of it. Finally they all just agreed to give her a second loading dose of keppra and send her back to the or.

With the shunt blocked yet again surgery was unavoidable. Although they were unsure this was even the problem at this point. They just went in to look. It was almost about 2 hours until we got the word that surgery was over. While speaking with Dr. Meltzer he informed us that with Michelle having slit ventrical syndrome she was becoming a candidate for an operation to expand her skull. In a slightly barbaric kind of way he said "we will break her skull and give her brain room to move and hope everything expands out and this could stop". In a not so kind way I sort of yelled "you would do what?!" Husband doesn't think that sounds barbaric but I do. After literally breaking down for about the 4th time we went on back to PICU to wait.. And wait... And wait..

Finally! Michelle came back up to he room. Extubated, awake, using words, thirsty and hungry! She was given a little morphine and that has been her night so far! She's eating (everything she can including my salad. She loves salad.). She's drinking so much they have turned her fluids down 3 times. We've had to change her sheets now twice. Thankfully they got us a normal bed so were co-sleeping at the moment (hopefully those chux pads do their job!) and she's sleeping off another dose of morphine.

I don't see us leaving tomorrow as we had hoped. Neurosurgery kind of stomped that one down but I'm hoping for Friday at least! She's different tonight versus last night. I can't put my finger on it but there's definitely something. I'm cautiously optimistic that this is almost over and we will be home soon.

And seriously, hug a nurse... They put up with way too much.