Hydrocephalus strikes again

For those who don’t know, Xavier is back at Seattle Children’s Hospital.

Over the past few weeks he’s been having headaches on and off. He would usually take some Tylenol and sleep it off.

Sunday he was in pain and didn’t eat much after breakfast. He was sleepy and he started to get dizzy. These are all red flag signs with hydrocephalus and Jen and I had a bad feeling. She called the hospital and they scheduled to bring him in Monday morning.

Unfortunately Monday morning there was a lot of traffic and it took her 4 hours to get there. He was really sick and they hurried him into surgery after doing an MRI. There was a blockage in one of his shunts. (He has two shunts). It was on the 4th ventricle. As far as shunts and ventricles go, this is the more dangerous one because it is deep in the brain. When he was younger at Primary Children’s Hospital in Utah, during one of his surgeries, they miscalculated the length of the catheter that goes into the brain and it ended up touching his brain stem and caused a stroke. He had paralysis in his face and it set him back physically for awhile. So when I found out that they were going to be doing a 4th ventricle shunt surgery, I was even more on edge. Xavier is 7 years old and it’s sad to say, but we are losing track of how many brain surgeries he has had now. We are somewhere around 15 or 16.

Xavier-hydrocephalus-seattle
Jen holding the phone so Xavier could call home and see what the family dog “Minnie” was doing

I made it to the hospital around 7PM just in time to talk to the neurosurgeon with Jen after the surgery. Living so far from the children’s hospital is a challenge. The neurosurgeon said that he didn’t like the position of this shunt and felt like the location of it would lead to more blockages and that he thought it needed to be moved. This was all Monday.

Tuesday Xavier still didn’t seem to be doing well and was very sleepy. Another CT scan showed that the shunt had another blockage already. He went back to surgery. This time things were even worse. He had not had time to recover from the last surgery and the pressure had been building and he was unresponsive. He had an apneic episode in the OR. When I asked what the difference was between respiratory arrest and an apneic episode, the surgeon said it was basically the same thing, just a short respiratory arrest. Luckily the anesthesiologist was right there to give oxygen. Because of his weak condition, they decided to just put an external drain in the 4th ventricle and let him recover and recuperate before doing the full new shunt operation with placing it in a new location. We are praying and hoping that this will be a long-term fix and that we will not have to come back to Seattle Children’s for a long time.

Xavier-hydrocephalus-seattle-1
Xavier holding my hand

That’s the thing with hydrocephalus. You just never know. We had a fun weekend, things were great, Xavier was eating well, playing etc. Within a few short hours Sunday he became very sick. By Monday it was very serious. All brains generates cerebrospinal fluid constantly. Those who have hydrocephalus do not have a way for this fluid to escape and it builds up and puts pressure on the brain. It will be fatal if there isn’t any relief of the pressure. It’s all very scary serious stuff. When they say “it isn’t brain surgery”, well this is. I’ve been trying to take care of things at home, go to work, drive to Seattle, spend some time with Jen and Xavier, and have been driving back home arriving at 1AM or later, crashing into bed only to get up early in the morning and do it again. Today (Wed.) I skipped going into work (don’t tell the boss) and went straight to the hospital. I was so nervous about Xavier I just wanted to get back to the hospital.

Xavier-hydrocephalus-seattle-2
Monday Aug. 12th after the first surgery

When I got there, I was very comforted to see him eat a couple of chocolate chip pancakes, eat a few grapes, and drink some juice. He is in a lot of pain and can’t move much, but Jen was able to feed him a good amount of food. By the end of the day, he wanted to call home and see what the family dog “Minnie” was doing. He really perked up when he started talking to his siblings. After 7 years of going through this so many times, I can’t overemphasize how important his siblings have been in cheering him up and helping him to recover after a surgery. They seem to give him the motivation to get well. Also, he’s so lucky to have Jen there with him. She really comforts him. I’ve seen him in so much pain so many times, and the hug from mom is the only thing that will comfort him.

So here we are Wed. eve. Xavier is doing much better than yesterday, but he’s really gone through it and has a lot of recovering to do. As I said, we are praying and hoping that the next surgery does the trick. We aren’t sure when they will do the procedure. We think he’ll be moved out of the ICU tomorrow. He’s gone through this so many times. I would do anything to trade places with him. It’s a terrible condition to have. There has to be a better way to unclog these shunts besides brain surgery each time. I’m thankful for modern medicine and the care available, but there is so much more that needs to be done in the research to treat hydrocephalus.

Some of our Facebook friends have traveled this journey from day 1 with us following our posts. If you want to spend some time and read about his journey, I’ve tried to document it on my blog:
https://rockymountainsunshine.com/hydrocephalus/ I look forward to posting a picture of him back at home when all is well.

The past 7 years have had a lot of ups and downs. There are times in life when everything is peachy, and then there are times in life when it feels like the weight of the world is crushing you and you don’t know how much more you can take. These past few days have been rough. It’s hard for the kids at home who are worried about their brother and it makes it harder that mom and dad are away. It’s hard for Jen to live in the hospital room and be woken up every 15 minutes during the night by nurses taking vitals. It’s obviously hard for Xavier who just wants to come home. We fear that he has been telling the doctors and nurses that nothing hurts and that everything is OK because he just wants to get out of there rather than letting them know if he’s in pain.

At a certain point on my drive to the hospital today, I pulled over at a gas station, parked my car, bowed my head and just plead with Heavenly Father, then continued on my way to the hospital. There is not much more you can do. I think of so many parents in the same situation. We’d all trade with our children in a flash. I guess that is part of the parenting experience. Families are God’s way of teaching us, His children, to love someone else more than ourselves.

We so very much appreciate all the prayers and words of encouragement for our little X-man.  We’ve had friends and family praying from France, England, The Netherlands, Canada, China, Russia, Utah, Washington, Hawaii, New York, California, Georgia, Wyoming, Colorado, Texas, Nebraska, Michigan, Pennsylvania,  Colorado, and many other places. All of these wonderful people praying for our Xavier and our family Thank you so very much!

———–

Friday August, 16, 2019

Xavier has been getting better and better. I worked today and left the office around 3PM. I needed to get a few things from home and then I headed to Seattle Children’s to spend the night with Jen and Xavier. The surgery is scheduled for early tomorrow morning and I wanted to make sure that I was here for it. I hate leaving the other kids at home, but they understand. They are all so worried about Xavier. Our daughter Emma who is 16 has really been helping out a lot at home this week while mom has been gone and I have not been around a lot.

I brought some Chinese food for Jen and I to eat for dinner because she is sick of hospital food. The cafe here is really not good. You need to step it up Seattle Children’s! haha  Xavier is pretty talkative tonight. He had requested for me to bring a certain stuffed animal because the one I had brought missed it. He says he feels better than yesterday but he’s really disappointed that the surgery isn’t until tomorrow. We talked about how sad it was that so many other children needed surgery today so they didn’t have time for his surgery.

Tuesday eve. when I got the hospital Xavier’s eyes were really not working correctly and I noticed some drooping in his face a bit. It worried me because of the previous stroke he had when he was younger. He had gone into the hospital walking, and came out and had to learn how to walk all over again. He was back to crawling.  His balance was really bad. The brain had to recalculate everything.

His eyes and face look better and better each day, but today (Friday, Aug. 16th) they let him out of his bed and he couldn’t walk at all. He was really unstable. Not something you want after brain surgery, much less when you have a physical tube coming out of your brain draining the fluid. So this is really concerning. Jen said that a physical therapist came by today and thought that it will take awhile to recover.  When Jen called and told me about this today, I was just frozen like time was racing by me while I was trying to process it all. I just want him to be able to live normally without all of these set backs. He had so many surgeries during the last school year that he got behind. I know it isn’t the most important thing, but being physically set back on top of it all is just heartbreaking. I had to just close my eyes at my desk for awhile and pray.

I tried to prepare the other kids by letting them know that he might need a long time to recover from this series of surgeries, even more than last time.  That is hard for them to process. They expect him to come home and just jump right back into playing and doing all their normal summertime things.

I pray every day, in the morning and the evening, but I admit for better or worse, my prayers are much more intense and earnest when I have a sick child like this. I hope I am learning what I am supposed to by these trials. I have to trust in God.

I know very strongly in a very personal way that the Lord is aware of Xavier and his needs. I have felt His love for him. I have felt angels around in some of the most terrifying times. I’ve had other sacred experiences that I don’t feel comfortable sharing. It has all cemented by belief in God the Eternal Father, His Son Jesus Christ, the Atonement of Jesus Christ which brings healing power and sanctification, and the reality of the comfort of the Holy Ghost which has brought peace to my mind and soul when the waters are very troubled.

As I was driving to the hospital tonight I thought of the words of this hymn:

When upon life’s billows you are tempest-tossed,
When you are discouraged, thinking all is lost,
Count your many blessings; name them one by one,
And it will surprise you what the Lord has done.

Count your blessings;
Name them one by one.
Count your blessings;
See what God hath done.
Count your blessings;
Name them one by one.
Count your many blessings;
See what God hath done.

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings; ev’ry doubt will fly,
And you will be singing as the days go by.

Count your blessings;
Name them one by one.
Count your blessings;
See what God hath done.
Count your blessings;
Name them one by one.
Count your many blessings;
See what God hath done.

When you look at others with their lands and gold,
Think that Christ has promised you his wealth untold.
Count your many blessings; money cannot buy
Your reward in heaven nor your home on high.

Count your blessings;
Name them one by one.
Count your blessings;
See what God hath done.
Count your blessings;
Name them one by one.
Count your many blessings;
See what God hath done.

So amid the conflict, whether great or small,
Do not be discouraged; God is over all.
Count your many blessings; angels will attend,
Help and comfort give you to your journey’s end.

Count your blessings;
Name them one by one.
Count your blessings;
See what God hath done.

Yes. God is over all. 

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