This is hydrocephalus

I’m a land lover. I am not crazy about flying. I like the rubber on the pavement and my feet on the ground. Up here in the Olympic Peninsula, they have these things called ferries. Not the kind you see in Fablehaven with magical powers, but the kind which float on water. They are large boats/ships/vessels, I don’t know what you call them, but they are pretty cool. Instead of driving around the water and taking some bridges, you drive your car onto this big ferry and it transports you across the water. So while I’m a land lover, tonight I’m taking the ferry back to Port Angeles from Seattle. I’m going on 3 hours sleep within the last 48 hours and I need a break from driving. It’s been a hectic past two days filled with stress and anxiety.

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Xavier was very lethargic and had difficulty opening his eyes on Tuesday

 Jen gave a good update on Facebook Tuesday to let everyone know that Xavier was sick and headed to surgery on. I’ve been busy driving back and forth from Seattle to Port Angeles and frankly haven’t had it in me to give an update. Too tired. Too stressed. Trying to emotionally deal with it all. Trying to decide where I’m most needed. At the Seattle Children’s Hospital where Xavier is undergoing brain surgery to replace his shunts which treat his hydrocephalus condition, or back home in Port Angeles with our other 3 children, to help calm their fears and anxiety. I’ve been torn and probably should have spent more time in Port Angeles with the other kids. It’s an impossible choice and you can argue both ways.

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Loading Xavier on to the ambulance to be sent from Port Angeles to Seattle Children’s hospital

So to give context, over the weekend we had gone to Portland, Oregon for a family overnight getaway to go to the Portland Temple.  Xavier had a blast. He seemed absolutely fine. Xavier started having a headache on Monday. They didn’t have school and he just watched TV. The front of his head was hurting. I am getting over a cold and thought maybe he was coming down with something. But since he has hydrocephalus, headaches always put me and Jen on edge.

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Tests and prayers

He went to bed early and Jen kept him home from school Tuesday. He became more and more dizzy and lethargic. She made an appointment with the pediatrician and he suggested going to the ER. The ER in Port Angeles doesn’t really deal with hydrocephalus and did some tests and scans and sent them over to Seattle Children’s for direction. I left work and got to the ER and nothing seemed to be happening. Xavier couldn’t even open his eyes and he couldn’t walk. I was getting really anxious and kept asking for updates telling them that I thought we needed to go to Seattle Children’s and that we should get going sooner than later. I knew that I knew more about Hydrocephalus than anyone there and that the symptoms did not look good. Xavier was in pain, wincing, moaning, and letting out little cries with his eyes closed. (He is so brave and strong. The pain must be horrific.)

I was starting to have some serious PTSD. A few years ago I stood in the ER at Primary Children’s in Salt Lake City, with a little whimpering Xavier in my arms, when he went into respiratory arrest. He basically stopped breathing and almost died in my arms as I yelled for some help. Chaos erupted in the ER as they grabbed him from me, laid him on a table and pushed me and Jen out of the room. We watched through the glass as they frantically worked on him getting him intubated for breathing and monitoring his heart and oxygen. He was rushed into surgery to replace his shunt and save his life. This is Hydrocephalus.

I’ve never been so scared and helpless in my entire life. There is nothing you can do. There is no cure. The only treatment is brain surgery; putting in a shunt or replacing a defective shunt. (A little valve which releases pressure on the brain from fluid buildup.) Now, here we were again in the ER, and it all seemed too familiar. It appeared like we were forgotten and Xavier was heading in the same direction. His heart rate was slowing. His breathing was more and more shallow. I was stressing out trying to get someone to get us out of there to where there were neurosurgeons who could help us. After many hours,  many prayers, and much to my relief, they decided to transport him via ambulance to Seattle Children’s Hospital where they have a team of 5 neurosurgeons and they do hundreds of shunts.

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They put the stickers and marks on Xavier’s head to help with the CT Scan.

I gave Xavier a priesthood blessing before they took him to the ambulance. Jen went with him in the ambulance. It was a  déjà vu from leaving the Timpanogos Hospital 2 days after his 3-month premature birth, and heading to Primary Children’s in Salt Lake. It was all just a little too much. After seeing them wheel him onto the ambulance, him being mostly unresponsive to everything going on around him, I kissed Jen and walked to our van. I wanted to cry, but there just wasn’t time.

I drove quickly home to gather some clothes for Jen and Xavier, a teddy bear, a phone charger, and a couple other things. I then had to gas up the van and fill a tire that was getting low. I made it to Seattle Children’s about 45 minutes after they had arrived. More tests and CT scans.

We had done a consultation with Primary Children’s in Salt Lake back in February before we moved and mentioned that there was a possibility of us moving. The Dr. had a CD burned of all of the MRI files etc. for Xavier. For some reason Seattle Children’s had not been able to get these images from Salt Lake. It was a miracle that we had them and a blessing that Jen remembered that we had the CD. With this, they could quickly compare what his brain should look like and what it looked like now and they could tell the 4th ventricle was enlarged.

After comparing the new images they then decided he was really sick and they were going to operate without delay.

The neurosurgeons consulted with us as did the anesthesiologist. It was all in process as they rushed him off. The surgery went well. I left at 3 a.m. to try and be back in time to take the kids to school and assure them that everything would be fine with Xavier.

As I was driving the 3 hour drive my alarm went off on my phone which was supposed to wake me up normally at 5:30 a.m. to get ready and take Emma to early-morning seminary. There was no sleep for me. It was already Wednesday morning. I got Camille off to school, forgot her coat, drove back home for the coat, and got Emma off to early-morning seminary. Then, a nice neighbor offered to take Gavin to school. I jumped at the offer and then set my alarm for 3 hours later. Finally a little sleep.

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Gavin, Emma, and Camille with some of Xavier’s toys on our way to see him.

When I woke up later Wednesday morning, Jen said that they were talking of having Xavier go home. I was so excited. But before I had showered and got out the door, they had done an MRI and things didn’t look right with his front ventricles. They said the other shunt had failed and another brain surgery was needed immediately. I quickly got on the way back to Seattle. The traffic was much better at 3 a.m. than during the afternoon. It took me awhile to get there. He was already in the OR when I arrived. It seemed that all went well with the second surgery and we discussed everything in detail with the neurosurgeon post-op.  Wednesday evening I left thinking everything was now OK. That’s where this blog started, me on the ferry heading back to Port Angeles after 48 hours with only 3 hours sleep.

Thursday the recovery was mixed. He was up and then back down. They did another MRI and another CT Scan. They stopped giving him solid foods after breakfast for fear that they would need to operate again. They had been trying to communicate with Salt Lake to see if they had used the wrong size valve or something. They were not sure exactly why he wasn’t improving faster. Everyone seemed concerned but not sure what the next steps should be.

Luckily for us, there was no school Thursday because of a strike. So, after a few hours at work to catch up on some critical things, I made the 3-hour journey to Seattle with the other kids so that they could cheer up Xavier. It seemed to work. He was smiling a bit. and even spoke a couple times. Thursday morning there was talk of him going home. There was no talk of that Thursday afternoon. What a roller-coaster. The latest CT Scan Thursday afternoon showed some slight improvements. We were still waiting for the neurosurgeon to come and give is an update.

I am impressed with Seattle Children’s Hospital. While I was there, they had a Risk Nurse come by to see if she concurred with what the nurse assigned to Xavier was reporting. Just another set of eyes. Lots of vitals. Lots of checks. Nobody was quite sure what was going on though. He continued to be up and down, but it did seem that he was improving, but ever so little.

Hydrocephalus causes pressure on the brain and for whatever reason, Xavier is very sensitive to these changes and it really rapidly affects him.

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Our visit Thursday with the other kids seemed to lift his spirits but he still didn’t talk much.

On the way to Seattle, I had warned our children that Xavier looked different with a lot of his head shaven and large incisions that have been stitched up where they operated. I told them to not talk about it and make Xavier feel self-conscious. He’s been feeling his head and we’ve tried to explain everything that has happened. It was a little too much for Gavin seeing Xavier like this. He had to go away from the bedside as tears started to come. It made us all tear up a little. I think Jen and I have gone through it so much that we are better prepared for how he looks post-operation. I remember the shock after his first shunt surgery, seeing this little baby with the huge bulge on his head and all the stitches. It’s hard to see them like that. Gavin and Xavier are best friends and Gavin wasn’t prepared for what he was seeing. Gavin was able to gather his emotions and laid down next to Xavier on the bed and they turned on Wild Kratts, a show they both love.  Xavier at first wasn’t super responsive when we first got there. He was just returning from a CT Scan and was wiped out. But slowly he started interacting with the other kids a bit and even laughed a couple times. I think it was good for Xavier to have his siblings there (except for Julienne and Maggie who are at Utah State University.) I think it was good for the other kids to see how serious Xavier’s condition was. Everyone’s prayers are a little more fervent now.

In quiet moments I have been pleading with the Lord. Thanks to Facebook and Instagram, friends and family around the world have added their prayers and have given us messages of encouragement. A couple sweet church members brought meals and loaves of bread. Others have offered help. We so appreciate all who have once again rallied around us. It is a blessing having a church (ward) family close by us to minister to us. We have so many dear friends from our last ward in Highland who cared for us through all of the other hospital stays and surgeries. We had a lot more family around us in Utah too, and we miss them being close during these times.

I hesitate to post things because I don’t want to post that things are rosy and then have things turn bad, which all-to-often seems to happen with Hydrocephalus. But I also know people are worried and want updates.

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Gavin read a book to Xavier. Emma and Camille watch.

Friday Xavier seemed to really turn a corner and showed some improvement, but not enough to go home yet. School was again canceled, so after a few hours at the office, I again went with the kids to Seattle. My cousin Jennifer who lives in the area had come by after work and she visited with us for awhile. The kids were so excited to see Xavier and had brought some of his toys. He just lit up and became his normal self. He was laughing and joking and playing. They all had fun with him. He was so sad again when we went home without him. Jen, my wife, has been a trouper living in the little hospital room with him.

All indications seemed to show that he would be able to come home Saturday. That’s the trouble with this condition, it’s never over. There is no cure. There is only this extremely dangerous, painful, surgery to place a shunt in the brain to drain the fluid.

Thursday the neurosurgeon had asked Xavier if he remembered how bad his head hurt when he came to the hospital. Xavier said that he did. Then he asked if his head hurt worse now (after two surgeries) or if it hurt worse when he had come in. Xavier said that it hurt worse when he first came in. That shows a little of how painful it must be to have that kind of pressure on your brain which pushes it against the skull. If there is no relief to the pressure, death will result. We are very aware of the danger of Hydrocephalus. We follow many hydrocephalus groups and forums on Facebook and have seen many succumb to this condition.  

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We start to see some smiles Friday when we visit again with the other kids and he starts playing and talking a lot more than before. The nurses and doctors are impressed with the turnaround.

As we left the hospital Friday, I had a talk with our children. I asked if they had noticed a difference today in Xavier. They all talked about how happy he was today, and how he played, and how much he talked. I pointed out the priesthood blessing and many many prayers.  They understood what I was saying and said that God had answered our prayers. I told them that they had seen a miracle tonight. I wanted them to always remember for the rest of their lives that they had witnessed a miracle.

 

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Xavier is excited for us to come visit but gets very sad when we all have to leave. Jen stays at the hospital for the entire time.

It’s now Saturday morning. I’ve just got news from my wife Jen that they are going to discharge Xavier. I’m heading back to Seattle Children’s Hospital one more time. I’m praying that everything is OK and that we won’t have an emergency return trip shortly after coming home.  This is hydrocephalus.  It’s the constant worry that the shunt (in Xavier’s case, two shunts,) will fail and you are a ticking time clock to get to a neurosurgeon. We call him the X-man. He doesn’t really have super-hero powers, but he melts my heart and everyone who has ever met him comments on how sweet he is and what a funny personality he has. He jokes all the time and has a catch phrase when something unexpected happens, “I did NOT see that coming!”

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Xavier was so excited to go home!

I don’t know everything, but I do believe all the prayers on Xavier’s behalf have been heard. I do believe that the priesthood which healed the sick and the afflicted in the Bible has been restored to the earth. This boy Xavier has been one miracle after another for our family. I love his humor. I love his love of life.  I love his zest for cars, trucks, trains, and super-heroes.  I love how close he is with his brother Gavin who is 13 years old. (Xavier is 6.) He makes me laugh daily. I have thanked Heavenly Father countless times for this precious boy in my life. I’ve learned so much from these heart-wrenching trials. I’ve spent a lot of time on my knees both pleading for miracles, and in prayers of gratitude. Through it all, Xavier has been strong and pleasant. He bears his pain and burdens well. He is a joy.

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Xavier after we buzzed his hair to try and make it match where they had shaved his head for the two surgeries. He was not too happy about the haircut at first. After cutting his hair so short we could see his previous scars from the other surgeries when he was younger.

You can read more about Xavier’s journey with hydrocephalus here. 

If you want to learn more about hydrocephalus or donate to a charity, the Hydrocephalus Association does a lot for the cause.

I will be adding this post to the hydrocephalus page on my blog eventually as it is now part of his journey.

 

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