This page is dedicated to our son Xavier who was born 3 months premature and developed Hydrocephalus as part of a complication of a brain bleed. He spent 4 months at Primary Children’s Hospital in Salt Lake City. Xavier is now 8 years old. This is his story.
February 18, 2012
Baby Bringhurst surprised us tonight 12 weeks early. Mom is doing well. Baby boy is showing good signs. We can use prayers.
February 19, 2012
Little Xavier is doing well. It’s a day-by-day battle but he came off the ventilator today and just has the oxygen mask now. Thanks for all the prayers & support. He looks like a 2 lbs Gavin.
February 20, 2012
We were able to hold Xavier! I think it was good for mom and baby. He fell asleep instantly with mom.
February 20, 2012
Xavier just took an ambulance ride up to Primary Children’s Hospital in Salt Lake. They are concerned with his heart and want him up here in case an emergency operation is necessary. We’re hoping we can avoid that. They released Jen early so she could come up here and be with him.
February 25, 2012
One week ago we thought we were going to go to the hospital, they’d do a couple tests, and we’d be sent home telling my wife Jennifer to rest. Instead, Xavier was born 12 weeks early, emergency c-section, at about 1AM Saturday. Since then I’ve been introduced to NICU and Life Flight (thought it was ground transportation in an ambulance to Primary Children’s Medical Center). I’ve also been learning everything thing I can about patent ductus arterioles, coarcation of the aorta, respiratory distress syndrome, apnea, intraventricular hemorrhage, jaundice, and the flu. Xavier is battling all of these concurrently. Surprisingly, all of these are somewhat common in babies born at 28 weeks, except for the flu. So Jen and I have been spending a lot of time at the hospital late into the nights. It’s about an hour away from my office and about 45 minutes from home. We’re trying to balance taking care of our other 5 kids and running my business. As you can imagine, it’s an impossible task and feel like we’re doing a lousy job at everything. Luckily we’ve had a ton of help from you good folks. We appreciate the prayers. I’m a believer in miracles and your prayers and kind words have brought me and Jen to tears more than we want to admit. Thank you for the meals, the messages of support, the rides to school, watching our kids, the visits, and today the three sweet neighbors who came over and cleaned our house. (They probably got more than they bargained for!) We really do appreciate you all. We’re in this for a long haul and don’t expect our current life to change much over the next 12 weeks or so as Xavier grows, gets stronger and faces likely heart surgery. We’re looking forward to Jen’s mom coming down and living with us for awhile. We really need some adult supervision in the home while Jen is spending so much time at the hospital and I am needing to get back to work in the days and spending some time at the hospital at night. However, Julienne (14) and Maggie (12) have been doing an amazing job and we appreciate them as well. We really just want our normal life back but we don’t see that happening for quite some time. I thought you’d all like an update and FB seems to be a good way to get the word out. Lot’s of love from our family to you & yours! P.S. Xavier is really cute. Despite all the things he’s fighting, he does look good and the doctors and nurses are hopeful that things will all work out just fine in the end – though we are not sure of any other challenges that may occur later on.
February 27, 2012
Jen is giving Xavier a bath! He’s quite alert tonight.
March 7, 2012
Xavier update: The hydrocephalus was severe enough that Xavier had to have surgery today to relieve the pressure on his brain. They placed a reservoir in his head which goes into the brain with a catheter and drains excess fluid into this reservoir just under the skin. They can then insert a needle into this reservoir each time they need to drain more fluid. It was something we were hoping to avoid. The surgery went well and Xavier has been sleeping most of the day. I feel bad for him. He will have this reservoir for a year or two. It will be a bump on his head about the size of a quarter. Hopefully the drains will eventually stop and the reservoir will no longer be needed. If not, they will need to put in a shunt, which is a permanent drainage. He would then live with that the rest of his life. We really hope this isn’t needed.
That’s all the bad news. As for the good news, the PDA has closed and he does not have a coarcation of the aorta. So, heart surgury will not be needed. That is a wonderful blessing I’ll chalk up to a miracle. That was the reason we were sent to Primary Children’s Medical Center in the first place. We’re glad we are here now because of the hydrocephalus and the needed brain surgery.
It seems all the other problems are behind us for now. The infection is gone. The swine flu is gone. There doesn’t seem to be meningitis. His breathing has improved. He has no jaundice currently, though that has come back a couple times. He should be back to feedings tomorrow. So it seems two steps forward, and one backwards. He remains very cute and we love him.
As I’ve spoken with so many of you, I’m so touched by your faith and prayers which continue to strengthen my faith. I know we all don’t share the same exact beliefs and religion, but it has been a great experience to fervently pray with you through this heart-wrenching experience. God loves us all even more than we can know. Our happiness and eternal life are His only goals. We get a glimpse of that with these beautiful children he sends us.
March 18, 2012
Xavier is one month old!
He is off the ventilator and now on a CPAP machine. The apnea seems to be getting better.
They discontinued the seizure medication and all other medication except for caffeine which helps stimulate breathing. They’ve been watching him closely to see if the seizures (or whatever they were) come back. So far so good.
They were tapping the reservoir (removing cerebralspinal fluid from his brain,) twice a day, now they’re doing it once a day and removing less fluid. Hopefully, that means his body is beginning to absorb the fluid on its own. If that happens he won’t have to have a shunt.
They removed the last of his IV (PICC) lines! Now the only tube going inside him is his feeding tube! He’s much happier now.
Thanks again for all your prayers! We’ve seen many miracles. Things are looking up! We are praying that he’ll be healthy enough to go home sooner than May 1st! That would be another miracle!
April 8, 2012
I’m due to share an update on Xavier. The bad news is he is scheduled for another operation on Wed. They are going to put in a permanent shunt to help the hydrocephalus problem. We wanted to avoid this, but it seems like he needs it. It will hopefully help relieve the pressure on his brain so he won’t be as tired and so the apnea will stop. He’s still having some apnea spells where he stops breathing. He still needs to learn how to nurse so he can get off the feeding tube. Otherwise things are great. He’s now 4.8 lbs and growing. I’m currently holding him at the hospital. He’s now wearing cute tiny clothes and gets to sleep in a crib instead of the heated incubator bed. These are all little steps we are taking moving toward bringing our boy home. We hope that this shunt operation will be his last big obstacle. It really touches me as I run into many of you and you tell me that you & your family are praying for him. I know your prayers have been answered. I’m lucky to have so many good friends. Happy Easter. God loves us all.
April 10, 2012
Xavier is going into surgery for the shunt to be placed. 7 surgeries in his 10 months on earth. I think he’s filled his quota for let’s say the next 90 years! Poor little guy was all smiles as we left him in the OR.
A shunt is a drainage system to allow the fluid in the brain to drain in order to alleviate the pressure on his brain. All of this will be internal and will be there for the rest of his life. Thanks for your prayers.
April 11, 2012
Xavier’s shunt surgery was successful! Stress level still running high but hoping for brighter days ahead. We can’t wait for him to come home hopefully by May.
April 24, 2012
It was the best of times, it was the worst of times, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair. (Charles Dickens) This describes the past 2-3 months since Xavier was born. For now he has really bad apnea. We continue to offer more prayers. I know brighter days are ahead
April 28, 2012
If you’re tired of Xavier updates just breeze by this. Mostly things are really good. He’s had several days in a row with just mild apnea and bradycardia. There were some extreme cases a few days ago which prompted them to stop trying to bottle feed him and they put him back on the high flow nasal cannula. They also put a special feeding tube in that goes past the stomach to the intestines to help alleviate the reflux. There are other little things but overall he’s been doing pretty well. We’ve had other sick kids at home making it even more challenging. Thanks for continuing to pray with us through this time. I can’t wait to one day tell him of all the people he had praying for him and what miracles we’ve seen because of these prayers and faith. You’ll notice a lump on his head. That’s the shunt valve for his hydrocephalus. One day hair will cover it and it won’t be so noticeable. It’s time I should go home now. It’s hard every night leaving even though I know he’s in good hands. I can’t wait for him to come home!
May 6, 2012
The whole family finally gets to meet their brother Xavier! 5-6-12. It’s a nice anniversary present!
May 28, 2012
So I haven’t given an update for awhile because I keep hoping that Xavier will be coming home and I can just share the good news, but I guess that won’t happen in May. Hopefully he’ll come home in June! Also, now that he is bigger (8.5 lbs) and we get to feed him a bottle (35ml) I’m busy while at the hospital and both hands are required. I prefer doing updates when I’m not tapping it out on my phone with my left thumb like I’m doing now. In general Xavier is great. He cannot come home until he can eat enough to sustain himself. Right now he still needs the feeding tube. His apnea has really improved and he’s mostly outgrown it. So while we are getting closer to bringing him home, we still don’t know when that might be. Thanks for your prayers! We appreciate it so much!
June 3, 2012
Another Sunday at the hospital. 6-3-12. Xavier is doing well. He’s working on getting his bottle feeding up and off the feeding tube. Hopeful he’ll be coming home within a couple weeks.
June 21, 2012
Huge news!!! Xavier (ecks-ZAY-vee-er) is home! He took his first car ride today from Primary Children’s Medical Center to our house! (unless you count the ambulance ride from Timpanogos to Primary) and he’s finally home! It’s been a long road since Feb. 18th when he was born 3 months premature. He stayed 2 days at Mount Timpanogos Hospital in Orem. They decided because of a heart condition that he should be transferred to Primary Children’s Medical Center in Salt Lake. It turned out the heart condition was not as serious as they had thought. We still have a follow up visit still with a cardiologist to see about a small hole in his heart that should heal on its own. But as it turns out, he has hydrocephalus, so it was good that we were at Primary Children’s. He had an operation for a reservoir and later an operation for a shunt to help with the hydrocephalus. While he was there in the NICU he got the H1N1 Swine Flu and later a cold. He had issues with apnea and bradycardia. Lastly because of reflux and swallowing problems, he had to have an operation for a g-tube feeding tube. This young boy has gone through a ton. He is strong and amazing and I love him. I’m so happy he’s home with our family. He already seems excited to see new things, to see his siblings, and to finally watch some cartoons! (though he hasn’t yet) I know many of you are excited to meet him, but since his immune system is not as strong as other babies, we’re asking that you don’t come visit especially with children. We have been told to stay out of public places including grocery stores and church for at least 2 months. We love you, but please understand if we don’t invite you in if you come visit, it’s not because we don’t like you! We’re just a little protective after 4 months in the hospital’s NICU. Now on a serious note, I am deeply grateful for your prayers, fasting, faith, and all the other things that you all have done for our family. We have amazing neighbors and wonderful friends and family around the world. I know we have been blessed with a living miracle. My heart goes out to all the parents we met who did not get to go home with their baby. Many of these little ones are faced with difficult conditions their little bodies couldn’t handle. We are blessed and I recognize God’s hand in the miracles we’ve seen. We learned early on we were not in charge and the we had to let God’s will be done, not ours. Now Jen and I will not be getting a lot of sleep, but it’s worth it to have him home finally. Heeeeee Haawwww! (Jason throws cowboy hat in the air and does the boot scootin’ boogie)
July 1, 2012
Xavier’s first week home has been great! He loves having his siblings around making a fuss over him. He is fascinated by everything he sees. Up until now his surroundings have been pretty boring in the hospital bed. His feedings are improving and he seems very healthy. We had one scare Thursday night and ended up at Primary Children’s until 4 am. It looks like he has a hernia that will require an operation. We have a follow up visit Tuesday. Thanks for your prayers & support. It’s great to have the family together.
August 12, 2012
Jason watching the closing ceremonies with Xavier. One more operation tomorrow at Primary Children’s Medical Center for Xavier’s hernia. Hopefully no more operations for a very long time!
October 5, 2012
What a fun night last night with the three funniest comedians in Utah! All three comedians, Shawn Rapier, Michael Birkeland, and Stephen Jones brought down the house with laughter. Many thanks to my good friend Shawn Rapier for putting together such a wonderful benefit for Xavier. I’m still on a high from such a great night with so many friends. I felt like George Bailey from It’ a Wonderful Life as I saw all of the wonderful people coming into the packed theater. Thanks to everyone!
October 7, 2012
This is the slideshow we put together for the comedy benefit show for Xavier. It has pictures of Xavier and the family during Xavier’s 4 months at Primary Children’s Hospital.
October 14, 2012
It’s been a long time since I have given an update on our little million-dollar baby Xavier and I know a lot of friends and family want an update, so here you go! 🙂 Xavier is now 12 lbs 4 oz. He’s 8 months old. He seems like a healthy, albeit, small baby. He was on the g-tube/feeding tube at home for a little over a month, but since August, he has only been nursing, something the doctors didn’t think he would ever do. They also thought that we’d need the g-tube for 6 months to a year. So in many respects he is really doing very well. He’s had vision and hearing tested, and they seem to be mostly good. He has a mild case of Duane Syndrome, but nothing they think will require eye surgery. It’s a neural issue and won’t affect his vision really. He’ll just have to turn his head rather than having great peripheral vision to one side. We had a physical therapist coming twice a month, and now we are down to once a month. But there are not really any issues currently. They are watching for other developmental delays, but they haven’t noticed anything yet. So things really are great. Jen has lots of Dr. appointments but they are mainly to monitor how he is doing. The hernia operation went well. The shunt seems to be doing its job. He has hydrocephalus and the shunt will be left in for the rest of his life. It is a valve that detects when pressure of cerebrospinal fluid builds too much, then releases it. A tube goes down from the brain (under the skin) behind the ear, and down into the abdomen where it drains. Once he gets some hair it won’t be noticeable. He also has a helmet now. This is because after the shunt operation, the nurses would lay him on the other side, and his head got very flat on the other side. The helmet is helping shape his head so one side is not so flat. He’ll have that for another 4-6 months. He seems to be teething now and does a lot of drooling and chewing on his fingers. He’s a happy baby and we feel very blessed to have him. It was a hard long journey at Primary Childrens. The medical bills are still rolling in. But I know things are going to work out. I remember not long after I started my business, talking to my wife Jen about how expensive insurance was. I said, “Maybe we should just drop insurance and pay for everything out of pocket. We rarely have more than a few thousand dollars a year in medical bills.” Boy am I glad Jen talked me out of that! Things would be very dire without our insurance. We had the cheapest most basic insurance I could find, but it’s been a huge blessing to have it. There are many things it hasn’t covered, and we had a huge deductible, but when you get into the costs we ran into, it gets pretty crazy.
November 13, 2012
Anyone who has had to have their child go through an MRI knows that it is really scary. We’ve had to do it too many times. All the needles and sedation. Especially when Xavier has gone through so much. Here is a picture of Mommy comforting Xavier before the MRI after the IV was placed. Poor little guy!
December 16, 2012
A little update on our little X-Man. We had the MRI yesterday morning at Primary Childrens. The good news is that his 4th ventricle was the same size as the MRI 30 days ago, so he doesn’t need a second shunt currently. However, the other ventricles were twice the size they were at the last MRI, so his shunt is apparently not working. Xavier is going in Tuesday for surgery (shunt revision) so they can trace where the shunt isn’t working and replace it. So while it’s not great news, we’re very relieved that he doesn’t require a second shunt. We appreciate your continued prayers. “Like the intense fire that transforms iron into steel, as we remain faithful during the fiery trial of our faith, we are spiritually refined and strengthened.” Elder Neil Andersen
December 19, 2012
Xavier was doing super well this morning and we noticed a huge improvement over how he’d been over the past few weeks. They did a CT Scan and X-rays and the surgeon came in to talk to us before being released. As you can see on the X-ray, his shunt has a sharp bend in the catheter which they were afraid might pinch and cause the shunt to stop working. He was showing no negative signs, so they released us and scheduled a follow up visit after Christmas to do another operation to fix the catheter so it doesn’t have the bend. (I asked that we get this in before the new year so we don’t get hit with our huge deductible). So we came home and Xavier has gotten worse as the night went on. He has a fever, is irritable, and has been vomiting. So we are heading back to Primary Childrens in the morning where they will likely do the surgery tomorrow to fix the kink.
Some of you have asked how the shunt works, and in the X-ray you can see the shunt that goes down into the ventricle in the brain, the round valve which releases when pressure builds, and the catheter that goes behind his ear and down into his abdomen to drain the cerebral fluid. (I could now give lectures on VP shunts… I would just need a handy-dandy laser pointer)
So we’re disappointed and concerned and just really want the happiness of Christmas to start instead of the fear and dread of surgeries and the discomfort of our little buddy Xavier. So this is the inside scoop. If you’re reading this, you made the list. Feel free to contact me if you have any questions.
Again, thanks for your many prayers. It really means a lot.
December 20, 2012
Latest status on Xavier. (long version)
So yesterday we left the hospital and Xavier was happier than he’d been in a long time. He got increasingly irritable last night and around 9:30 started vomiting. We called and neurosurgery said we could bring him in but they probably wouldn’t operate until the morning, so we decided to keep him home and watch him and they put us on the schedule to come in at 8 a.m. Around midnight he was moaning. I fell asleep and Jen stayed up with him all night.
At 4 a.m. he had stopped seeing us, although his eyes were open, he wouldn’t respond to us talking and his breathing wasn’t normal.
We rushed to the emergency room at Primary Childrens. They did a bunch of tests and he became more and more lethargic. His breathing was sporadic. They were trying to get the on-call neurosurgeon. I was holding him in our room in the ER and he stopped breathing all together. I ran out into the hall and grabbed the nearest doctor. Next, sheer chaos happened. I guess they don’t technically have a code blue in ER, but a lot of people were yelling “We have a code!” We were escorted out of the room and the tiny room filled with dozens of people rushing in and out. They masked him with the hand pump oxygen thing, got a heart & oxygen monitor set up, and brought in a defibrillator. It was madness. The only comfort was us looking in and seeing the heart rate monitor which we became familiar with during our 4 months in the NICU.
They had to put in an emergency IV that goes in his leg into his bone (I can’t remember the technical name). I’ve never seen it before. They didn’t have time to get an IV in him before surgery. Everyone here was a little rattled and I think under the pressure they couldn’t get his IV in which is always hard even for the IV team because of his small veins due to his premature birth.
The surgeon stepped out and wanted to talk with us and I braced for the worst. He said they were going to do an emergency shunt removal and put in a drain tube. We left our things behind and rushed behind the bed as they wheeled him to the O.R. We gave Xavier a kiss and went to the waiting room and pretty much broke down.
So that is the long story. The shunt removal was fast and we are now in the pediatric ICU. They want him to relax for a little while after going through this trauma. We almost lost him.
He is on a ventilator which they are removing soon. They will likely put in a new shunt tomorrow assuming he has all good signs. He’s on morphine right now, so he isn’t real active, but he sees us and will follow us with his eyes. He is moving his limbs. We’re praying there was no brain damage.
So we’re blessed we came in when we did. We’re blessed to have a lot of people acting fast on their feet getting done what needed to be done to save his live. If he would have stopped breathing at home or in the car, things could have turned out much worse. I’m glad Jen stayed up all night with him. Life is precious. Hug your kids. #hydrocephalus
December 23, 2012
Xavier’s surgery went very well today. They put in a new shunt on the other side of his head (going down into his brain in the same spot). They were worried about infection so they didn’t want to keep opening the old wound. So the poor kid now has the stitches where they did the shunt revision on Tues., then removed the shunt on Thursday, then put in an emergency drain tube on Thursday, and now the new shunt put in Saturday. Each shunt has one large incision on the top of the head, one behind the ear, and one in the abdomen. So he has stitches on each side of his head, behind each ear, on both sides of his abdomen, in addition to metal staples where they had the drain tube. He is also bruised on each hand and foot from the multiple IVs. I can imagine I would not be too happy, but he still manages to give me a big smile and it melts your heart. Love this boy!
So he should be released tomorrow. I’m heading to church to see the kids’ Christmas primary program & ward choir program, then I’m heading up to the hospital to hopefully bring Jen & Xavier home.
In addition to all this, Camille has had the flu.
We’ve had family step in and help watch the kids. We’ve had friends and family far and near pray and fast for us. We’ve had Xavier’s name put on the prayer rolls in multiple temples by other dear friends. We’ve had a couple nice neighbors bring by dinner so I haven’t had to cook while all this has been going on. I have had a few good neighbors and my dad help with multiple priesthood blessings when I needed assistance. I’ve also had many friends and family check in with me to see how things were going. I really appreciate it.
I know there are other things I’m probably leaving out, so thanks to all and thanks to my Father in Heaven.
April 4, 2013
Update on Xavier: Xavier had an MRI last week on his brain to follow up on the new shunt that was placed in December and to follow up on the 4th ventricle to see if it had enlarged since the last MRI or CT scan. We’ve had to wait until today to meet with the Neurosurgeon, but I am happy to say that everything looks great! The new shunt is working as it should and the 4th ventricle has not changed. His head measurement is in line with a baby his age adusted for being 3 months premature. He said that we do not have to come back for 6 months, but in 6 months if things still look good to us, he said to cancel the appointment and come back in a year! That’s a great sign!
We are releived and thankful that prayers have been answered. Thank you all for your support over the past year. It’s had a lot of ups and downs, but we are celebrating today!
Xavier still has some challenges with eating and we are still feeding him through the feeding tube (g-tube), but we’re happy that it seems we won’t have any other surguries. RSV season is over soon, so starting May 1st we’ll become social again and take him out in public. He’s excited to meet everyone!
June 9, 2013
Xavier update. So I’ve been asked a few times by several friends to do another update. You can take my lack of giving updates as a good sign.
Xavier is really doing well. He is now crawling very well and getting into pretty much everything. He says, “Moma”, “Dad”, and a number of other words/names. He’s a pretty mellow baby. He rarely cries. He is starting to pull himself up to his knees, so walking probably won’t be too far off. He’s crazy about computers and every time I have my laptop out, it drives him nuts. He wants to play with the keyboard and gets extremely excited whenever I let him. He loves iPods, phones, remotes, and most electronic gadgets. I’m afraid he’s taking after me at a young age in this respect.
Medically, he had a check up last week with the cardiologist at Primary Childrens. We’ve heard on and off for months that his heart murmur was gone, then another doctor would hear it again and say that it was still there. I’m happy to say the cardiologist said it is gone and we have no need for follow up visits.
His Hydrocephalus seems to be in check. The shunt seems to be doing its job.
His gross and fine motor skills seem pretty in line with his adjusted age. He was born Feb. 18, 2012. He was three months premature, so his adjusted age would be closer to 13 months right now.
Our main concern still is the fact that he is getting most of his food through the feeding tube called a G-tube. They implanted a “button” in his stomach that we can open and attach the feeding tube and give him formula. We connect a feeding tube and pump at night and it slowly feeds him through the night. We also feed him three times during the day this way. He does still nurse four times during the day. However, when we have meals, we put him in the high chair, give him some type of food, and he will play with it. He turns his head if you offer him anything. Often while playing with the food, he’ll get a little in his mouth. He makes faces and sometimes will gag. He meets with a feeding therapist. Eating food is kind of a big deal, so this is a concern. We’re hoping he will overcome this soon. Once we are past this, life should be pretty normal with him. He’ll always have his shunt until there is a medical break through to replace it.
Xavier is happy, laughs, enjoys playing with his siblings and loves playing with toys. He loves music and will bounce or clap when there is music. Overall, we are so very thankful that we are where we are today and he is doing so well. Last year was a rough year. Things are looking very bright right now. Thanks so much for all your support and prayers. I know a lot of you lived through the ups and downs vicariously by my updates and you care a lot about our little X-man and our family. I’m grateful for such wonderful friends.
June 21, 2013
It’s a Bringhurst holiday today. It has been one year since we brought Xavier home from the hospital! He was born 3 months premature and every day for four months I would come home from work, eat dinner with the family, and then drive an hour up to Primary Childrens to see him and hold him for a few hours in the evenings. The worst part was then leaving him each night alone at the hospital. It was also really hard because I felt guilty for not spending more time with my other five kids. It was a such a great day to finally be able to have the family together at home and to start to get life somewhat back to normal. Things are going well for him & the family now. Happy days are here again!
July 1, 2013
This was not part of the vacation plans. We drove 6 hours to get here. While getting ready for bed, Xavier’s g-tube came out and is defective. The closest children’s hospital was a long drive from La Push to Seattle. Luckily we took a ferry for part of the way so I could sleep for an hour.
September 28, 2013
Little update on Xavier since it’s been awhile. He’s doing very well! He still has the g-tube for tube feeding, but he does not get fed at night with the pump now. He’s drinking out of a sippy cup and loves chocolate milk. We are supposed to give him high calorie food and drink because he’s under weight and under the normal size. We don’t worry too much because Gavin was small and finally at 8 seems to be catching up to other kids his age, and he was not premature. He eats almost everything now, though he still struggles with some food. He really loves chocolate pudding and ice cream. Soft foods are easier for him to swallow. He crawls super fast and goes up and down stairs now. He almost took a step last night to me, but then got scared. He’s been walking in a couple different walkers and gets around really well. He walks around furniture. I think he’ll be walking real soon. He says, “Hi!” to everyone he sees. He grabs all types of objects and says, “Hello!” into them like they are a phone. We are very happy with his progress and thank the Lord for how blessed we’ve been. I sometimes look at Xavier and can’t believe he’s the same little 2 lb. baby that I would hold every night at Primary Childrens Hospital. On Feb. 18 he’ll be 2 yrs. old. He now weighs 17 lbs. He is a joy to our family. He crawls as fast as he can to the front door every night when I come home saying, “Dad!” Usually Camille & Gavin are there to greet me as well. I miss that immensely when I’m traveling.
November 28, 2013
In the Mormon faith (The Church of Jesus Christ of Latter-day Saints) we don’t have a paid clergy. The members of the congregation are asked to give talks on Sundays. I was asked to give a talk on gratitude. I thought I’d share part of it today on Thanksgiving.
Elder Bednar said, “A grateful person is rich in contentment. An ungrateful person suffers in the poverty of endless discontentment.”
Every year for family home evening, as we get close to Thanksgiving, we make a list of things for which we are grateful. Then the next year we read the previous year’s list. Some of the things make us chuckle a little like Gavin being thankful for Spider Man. Others are very sweet like the children being thankful for their siblings.
In the spirit of Thanksgiving, I have made a similar list of things for which I am grateful.
Grandmother Maggie Burgon Alldredge. I spent a lot of time with my grandmother.
My grandmother’s faith & example set me on the right course and helped plant the seeds of my testimony.
I know she prayed for me every night on her knees.
She took me to church on Sundays.
She made sure I went to primary during the week.
She would read the Book or Mormon with me.
My mother Janet
She taught me how to work.
She taught me that I could do anything I set my mind to.
She worked hard to provide for me.
She always wanted to do what was best for me.
She was more concerned about me than herself.
She taught me through example to be very generous.
She taught me to go the extra mile.
She has always believed in me.
Alma 37:37 Counsel with the Lord in all thy doings, and he will direct thee for good; yea, when thou liest down at night lie down unto the Lord, that he may watch over you in your sleep; and when thou risest in the morning let thy heart be full of thanks unto God; and if ye do these things, ye shall be lifted up at the last day.
My LDS Mission. So much good in my life can be traced back to my mission.
Scriptures. I’ve heard it said, “When we need to speak to God we pray. When we want to hear God, we read the scriptures.”
The gospel teaches us to look outside of ourselves & help others – family, missions, callings, home teaching, etc. It all teaches us to stop thinking of ourselves and to serve others.
The Spirit guided Jen and me to keep health insurance.
The priesthood. Elder Neil A. Andersen said, “The blessings of the priesthood are infinitely greater than the one who is asked to administer the gift. The Lord said, “In the ordinances … the power of godliness is manifest”
Doctors & modern medicine.
We are thankful that Xavier was born last of our children. Some of the procedures were not available 10-15 years ago when.
Thankful for our ward & neighbors. The kindness shown to us. I won’t try to give all the details of everything you did for us. Just know we are truly grateful for you in our lives. We grew to love you more by being served by you.
Grateful for each of my children. I pray for them by name every day.
Military & Freedoms.
Elder Soares spoke about Brother Moses Mahlangu in South Africa who discovered the truthfulness of the gospel, but was not allowed to attend church due to the laws. So he sat outside the window of the church every Sunday for years so he could hear the sermons.
Elder John B. Dickson said, “It has been said of Africans that they have very little of that which matters least and a great deal of that which matters most. They have little interest in enormous homes and the finest cars but great interest in knowing their Heavenly Father and His Son, Jesus Christ, and in having eternal families.” I am thankful to be born and live here where we don’t live in a constant fear for our lives.
Gordon B. Hinckley said, “When you walk with gratitude, you do not walk with arrogance and conceit and egotism, you walk with a spirit of thanksgiving that is becoming to you and will bless your lives.”
Above all, I’m grateful for the Savior and Lord Jesus Christ. For his Infinite Atonement, for eternal life and for salvation that comes through no other way.
I know with absolute certainty that our Father in Heaven lives and loves each of us. Jesus Christ is His son. He died for us. He was resurrected. They both appeared to Joseph Smith. Joseph Smith translated the Book of Mormon. The priesthood was restored. The Church of Jesus Christ was again on the earth to prepare for the last and second coming of Jesus Christ. We are eternal beings and we are meant to be a part of an eternal family.
December 10, 2013
Friends – Thanks for all your concern about my upcoming surgery. I wanted to update you. The CT Scan last week on Xavier showed some concerning things. We thought that his shunt was malfunctioning, but it seems to be working fine. However, his fourth ventricle in his brain was enlarged. This means the existing shunt is not draining the CSF in that part of the brain. So, Xavier is going in for an MRI tomorrow and is likely headed for another surgery to add an additional shunt for the 4th ventricle in his brain. That means he’ll have two shunts. Because of this, I am postponing my surgery until Jan. 15th. I appreciate your concern. We are praying that everything goes well for Xavier. You’ll be seeing me limping around for another month on the bad hip.
December 13, 2013
Another MRI for Xavier. Surgery next Tuesday. Luckily he won’t be getting a second shunt. Chiari surgery is what the neurosurgeon called it to drain the fourth ventricle of the brain. Xavier should be home after 2-3 days. Luckily we’ll all be together for Christmas and hopefully Xavier will be feeling a lot better.
December 18, 2013
Xavier is recovering today. A bit of a rough night. Jen held him the whole night while I went home and took care of the rest of the Bringhurst clan. They are continuing to keep him heavily medicated so he can rest and heal. The surgery was a success. They did an MRI this morning and the 4th ventricle in the brain looks better. We appreciate so many praying for us. It’s very much appreciated. We feel blessed.
December 22, 2013
I’m overdue on updating everyone on Xavier. To be clear, we aren’t seeking pity. I am aware that I have varying levels of friendship on Facebook, and some of you may not want to hear about our family issues. Others I know are very worried and are expecting updates and I haven’t been able to get one out. I’ve started several times, but by the time I go to update everyone, the situation has changed again.
Recap. Tuesday chiari surgery. (brain surgery to relieve pressure of the 4th ventricle). Wed. Xavier was in horrible pain and heavily medicated. Thursday he was doing really well. Still medicated, but seemed great and we brought him home. Friday I go back to work. I’ve missed a lot of work the past two weeks and being self-employed this is really not a good thing. Xavier continued to throw up everything after coming home. He hadn’t eaten in a long time because he kept throwing everything up. After finally getting back to the office on Friday, I was slammed trying to do email triage and get caught up on the most urgent things. Friday night I come home from work and Jen is holding Xavier. When he is healthy he crawls as fast as he can to the door yelling “Hi dad!” When he isn’t feeling well, I at least get a “Hi!”. I walked in and he just slightly looked up at me. He was ghostly white. I went over to him and talked to him. He was very lethargic. I pushed on his skin on his arm and it stayed completely white. I said to Jen, “We’ve got to take him to the emergency now.” We packed a bag, I gave him a priesthood blessing, and we rushed up to Primary Childrens Hospital, about a 45 minute drive when there is not snow and ice.
They were very busy. Lots of sick kids. We were trying to shield him from kids coming in with croup etc. He was dehydrated. They did a CT scan, vitals, etc. They called someone from neurosurgery and finally determined that he had chemical meningitis. (Jason quickly googles this to try and learn everything I can about this new strange term.) By the time we got an IV and were taken to our room, it was 2:30 a.m. and I felt I should get back home with the other 5 kids. Every time it is the same thing. I am torn between leaving Xavier at the hospital, and getting back to our other children.
Since then, it’s been a roller coaster ride. To make it worse, I’ve caught a cold and haven’t been able to really go visit and hold him since Friday. Saturday they decided it was the brain over-draining causing him to have nausea and dizziness, the same symptoms as having too much pressure on the brain from no drainage (hydrocephalus). Then last night his heart rate dropped to 60 and they didn’t know what was going on. More time on my knees in earnest prayer.
They’ve decided it’s still over-drainage and want him to lie down as much as possible for the next 2 weeks. (Say that to any almost-two year old. It goes over well.) But they changed his bed from being inclined to flat, and told Jen that every 2 hours he needs to lie down flat. Older children who have this procedure start to get a head ache, and then they know to lie down. A baby/toddler will just want to be held. But if he/she is held in an upright position, there can be over-draining of the CSF (brain fluid).
Where we are now. Tonight Xavier has had an enormous appetite and they just took out his IV. We have been preparing and planning on how to have Christmas with Xavier and Jen at the hospital. We are hoping now this is a sign Xavier will get to come home before Christmas. I firmly believe in the power of prayer. Thanks for your well wishes and prayers. We are lucky to know so many good people. I hope your Christmas is filled with peace and joy.
December 23, 2013
Hallelujah! Xavier is home! The kids made a “Welcome home Xavier!” banner for him. He was in a great mood saying “hi” to everyone then some fudge caught his eye and he downed some of that. Seems like it’s going to be a wonderful Christmas! Thank you everyone!
February 17, 2014
So tomorrow is Xavier’s 2nd birthday. Yep, he’s turning two! He is doing really well except for eating. He just can’t manage to eat much. He does best with ice cream or pudding. He has a real hard time swallowing anything, and it’s been getting worse. In December he had the chiari surgery right before Christmas. Unfortunately it looks like it didn’t work. So tomorrow on his birthday, he gets a not-so-fun present. We are going to Primary Childrens Hospital and he is having another surgery. This one is to place a second shunt in the rear of his brain to help the draining of the CSF (fluid). It seems that the shunt in the front is working, but for some reason it’s not draining the back of his brain where the 4th ventricle is located. It’s an uncommon thing called a trapped 4th ventricle. So he gets to have a detailed MRI in the morning, then they use a computer program to help guide the surgeon through the rare second shunt implant procedure. He will live the rest of his life with not one, but two shunts that keep the pressure of his brain from increasing too much. Twice the possibility of failure. Twice the worry. We’ve known for a long time that this might be needed, but we were hoping and praying for another way or a miracle.
I’ve come to know that Xavier is in the Lord’s hands and that things don’t always go the way I want them to go. It’s hard and it’s been a learning experience over the past two years. I’ve probably aged 10 years but I feel that I’ve also learned many things that I would never have any other way. I really feel that God has a plan for each of us. Sometimes the plan is difficult. It is up to us to seek out the good. I do recognize many miracles… But we always want more don’t we? We want to avoid the hard things even though they make us grow the most. We want to avoid sorrow, but that is how we recognize happiness.
Here is a little video I did awhile ago when my good friend Shawn put together a comedy night benefit for Xavier. It takes you through the first few months at Primary Childrens. After being born 3 months premature, Xavier spent 4 months at Primary Children’s Hospital in Salt Lake. As you can see from the attached picture, Xavier has come a long way. We hope this is the last of his surgeries. In the past two years Xavier has had six brain surgeries related to hydrocephalus and one surgery to put in his g-tube for feeding. Tomorrow will be his 8th surgery in 2 years. Poor little guy. I wish there was another way. He’s so strong and such a good-natured boy. I can’t wait to get him back home and have him playing with me, his siblings, and his toys.
#hydrocephalus is not fun. There is no cure. The only treatment is putting the valve (shunt) in the brain to release the fluid when the pressure builds. It’s a far cry from a perfect system. Here is to hoping they find a better way.
February 19, 2014
You know how in superhero movies, half-way through, they usually get beat up by the villain and you think there is no way they can beat the bad guy? Well that was today for Xavier. He had a very rough long day. So it’s not a great update. Last night he was in a lot of pain from the fourth ventricle shunt surgery and didn’t get much sleep. (neither did Jen) Today Xavier was extremely lethargic so we thought the 1st shunt must be failing. They did a CT scan in the morning and it looked like the 1st shunt was doing its job but the new 2nd shunt was touching (putting pressure on) the brain stem. The neurosurgeon ordered an MRI, but they were crazy busy at Primary Children’s and couldn’t get us in until 4 p.m. We kept trying to get them to bump us up and even had the neurosurgeon make a special request, but we still couldn’t get in before 4 p.m. We were pretty sure they’d need to operate immediately and we just wanted to get on with it. Xavier hasn’t been himself all day. He’s barely moved all day. Also, extremely concerning is that his face is drooping on the right side, he can barely open his right eye, and his eyes are not working correctly. The pupils are not dilating the same. Lot’s of waiting, worrying & praying today. Finally the neurosurgeon came down at 6:30 p.m. and spoke with us at my request. He showed us the MRI results and the shunt catheter is about a centimeter too long and is pushing against the brain stem. Also there is some bleeding that could be causing some extra pressure causing the brain trauma like a stroke which is likely giving him the paralysis to the face on the right side. He doesn’t think there is permanent brain damage, but he said it was a very difficult procedure even with the computer-guided program. He had difficulty placing the shunt. They had calculated the length with the computer to be 10 cm when it should have actually been 9 cm. So tomorrow morning they will open up the suture and clip off a centimeter of the catheter. He says it is a simple procedure since he does not have to place the whole thing into the brain again. He thinks the feeling should come back to Xavier’s face and that he should be more alert eventually, though he isn’t sure how long it will take. As you can imagine, today has been pretty horrible for everyone. I’m very glad that we were able to speak with the neurosurgeon and get some answers and a little comforting news. Tomorrow I hope this movie will have a great ending, and X-man will take on the villain (hydrocephalus) and quickly conquer this bitter foe! We appreciate your prayers everyone. It’s more comforting than you can imagine. #hydrocephalus There has got to be a better way!
February 22, 2014
Well I’ve been waiting to be able to post something good about Xavier. By nature, I’m think I’m generally positive, so I hate to post anything negative.
The past couple of days have been a rough go for little Xavier. However today he’s shown some improvement. He still is kind of droopy on his right side of his face. They’ve put an eye patch on and we’re supposed to rotate it every 2 hours so the left eye doesn’t get stronger than the right eye. His right eye is still struggling to do its job. But he is starting to grab wires (love of cables is in his genes) and even has played with toys in short spurts.
The neurosurgeon told us that he believes Xavier will continue to improve, but it might take a month or so to recover. As long as he is recovering, I guess I’m fine with that. We can however likely take him home soon! This would be really great for our household to have mom back and get me back to work. Not to mention we really just want Xavier home again.
So the update is good. Things are SLOWLY getting better. The CT scans are all looking like things are the way they should be now, but because of the trauma from the two surgeries, he’s going to take awhile to get back to normal. For the past two days he would only sleep and while awake he would just cry and moan. He has wanted to be held or to hold our hand pretty much constantly even while asleep. I can imagine that the poor little guy has been in a ton of pain and is confused / frustrated with the way he feels right now. The pressure in his brain is probably new to him now too with two shunts instead of just the one.
We appreciate all the kind words, thoughts, prayers, visits, messages, and help from family & neighbors who have been looking out for us.#hydrocephalus There has got to be a better way!
February 23, 2014
Guess who’s home? Xavier was so happy to be in his car seat driving home. He was laughing and playing with a toy car and talking more than he has since his surgery. I think at this point the hospital & nurses all scare him. They are constantly poking him and bothering him. He was so happy to leave saying “bye” to everyone . He’s happily resting now with dad. He can’t sit up yet and his head is really wobbly. So we need to watch him closely. But it’s a big improvement from 2 days ago. His face is a little less droopy today, but not quite back to normal yet. It’s been a tough week but I’m very thankful and grateful that Xavier is back home and making progress!
February 27, 2014
A little update on Xavier. He is really improving well. If you had seen him 1 week ago, you’d say it’s nothing short of a miracle. It’s another testimony of the power of prayer. He is crawling and sitting up by himself. He’s not walking yet. A lot of the paralysis is gone in his face. He is talking a lot and starting to eat some. His neck is really stiff and he leans his head to one side, but the physical therapist is working with him on everything. I’m so happy at how well he’s doing. We continue to pray for a full recovery and you can imagine how relieved we are at his recovery so far. Thanks for your prayers and support!
March 27, 2014
Xavier had an appointment today at Primary Children’s to have a CT Scan, X-rays, and then a meeting with the neurosurgeon as a follow-up on last month’s 4th ventricle shunt surgery. The good news is that the CT Scan showed no signs of enlargement in any of the ventricles. That’s a good thing! Xavier looks healthy, is active, and is making progress.
What worries us is that he still has not fully recovered from surgery last month when they placed a second shunt (one in front and one in the back of the brain) and they now say it may take up to a year to fully recover.
So he still has a few issues he’s facing. His eyes are not quite working right. We have an appointment with the ophthalmologist next month. The neurosurgeon said it may require an operation on his eyes to correct them, but they’ll likely want to wait awhile before making a decision on doing surgery.
His facial paralysis has improved, but he still can’t smile. He doesn’t seem to have control over the muscles that would make the face smile. It’s a little odd to see him laughing but not smiling. They think this will correct itself over time.
He is eating slightly better now, but he still struggles with liquids and solids. He does best with soft things like yogurt, pudding, and apple sauce.
He has poor balance, but he actually just started walking around today, although he is still wobbly. He hasn’t walked since the surgery.
So there’s the good and bad. Overall it was a good appointment. Nothing new to worry about. It’s just going to take time to heal and get back to where he was. He’s doing very well and is in to all kinds of mischief at home.
Thanks again for so many prayers and support. We know we’ve seen many miracles. #hydrocephalus
May 24, 2014
Xavier update. I have a lot of concerned friends and I’m always giving updates on Xavier when I bump into everyone. Since so many of my Facebook friends live out of state or even out of the country, I suppose I’m due for an update. Despite these pictures, Xavier is supposed to be wearing an eye patch and glasses to help strengthen his eyes so one doesn’t become dominant. His eyes seem to have improved a lot and I don’t think he’ll need surgery. His facial paralysis has been decreasing. He is getting his smile back, but it’s still a little lopsided. I am very grateful for this. Not seeing him smile has been really tough. His balance has improved and he’s walking pretty well. Hydrocephalus causes imbalance so he’ll likely always have some challenges with balance but he’s doing well. His eating has improved but he’s still fed through the g-tube and with a pump at night to get him the calories he needs. But he’s drinking chocolate milk and has a number of things he likes to eat. He’s speaking more and more and his vocabulary is increasing. He’s smart as can be and has a fascination with computers & phones. He loves music and sings. He’s 99% mellow and happy, but when he’s not, watch out! So thanks for always asking about him. We’re happy with his progress. The neurosurgeon said it might take a up to a year for full recovery from the last surgery, so he’s doing well and absolutely loves playing outside. We just need him to love his glasses!
October 9, 2014
Xavier had a follow-up appointment with the neurosurgeon today. Things look good and we don’t have to go back for a year! His eating continues to improve and his balance has really improved. He’s even started jumping as of today! A lot of prayers have been answered. There are still a few things we worry about, but this is one happy boy who loves cars, trains, and mowing the lawn with dad! He’s come a long way recovering from the brain surgery on his 2nd birthday back in February.
November 9, 2014
We sang this song today in church and our awesome neighbor Rachel Gillette sent me this amazing picture today of Jen and Xavier. I thought I’d share both since they go together so well.
Teach me to walk in the light of his love;
Teach me to pray to my Father above;
Teach me to know of the things that are right;
Teach me, teach me to walk in the light.
Come, little child, and together we’ll learn
Of his commandments, that we may return
Home to his presence, to live in his sight–
Always, always to walk in the light.
Father in Heaven, we thank thee this day
For loving guidance to show us the way.
Grateful, we praise thee with songs of delight!
Gladly, gladly we’ll walk in the light.
If you want to listen to it you can here:
Text and music: Clara W. McMaster, 1904-1997 (c) 1958 IRI
December 9, 2014
Xavier seems to be happy and recovering well from his eye surgery today. His eyes are very red which is normal. We have some prescription eye drops for him and Tylenol. He’s a brave little man. The pictures below are him bathing last night to prepare for surgery early this morning and then him coming home after the surgery. The hospital gave him the little lion. The surgery was for strabismus (to help the two eyes to work together). The surgeon said it went well. We are hoping and praying that it will help. I didn’t think it was all that bad but two different ophthalmologists said he needed the surgery. He had both eyes done which I think is more rare. I wanted to update everyone after Jen’s post this morning. He’s really been doing very well over the past month and hasn’t even needed to be fed through the feeding tube in over a week. Thanks for all the prayers and kind thoughts.
From the post, “This is Hydrocephalus” November 17, 2018
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!”
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.
“Hydrocephalus strikes again” from the post August 14, 2019
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 my wife 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.
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.
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.
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.
August 19, 2019
We are very happy to have Xavier home!!! It’s been an extremely difficult week. Xavier has some side effects from the surgeries and he’s having trouble walking. They don’t think it’s permanent and I think being home with his siblings is the best therapy. He will have some physical therapy to help him get walking again and we got a little walker for him. We are praying for a quick recovery. Thank you all for your encouragement and prayers!!!
August 25, 2019
I thought that I might give a quick update on Xavier. He’s had a good week. He is super happy to be home. He’s getting around pretty well independently with his walker. We hope that he’ll be able to walk without it in the near future, but the important thing is that he is feeling well, he’s not in pain, and he’s happy. Thank you for the continued prayers.
October 25, 2019
Xavier hasn’t been back to school since his surgery on Tuesday, but he and Camille didn’t want to miss out on the elementary school’s trick or treating tonight. Camille is the Bee’s knees! Xavier has been super excited about this cute costume Jen made. (Julienne and Maggie wore the same costume when they were little). We feel like it was a miracle that he was able to come home so quickly and is recovering so well. Thanks for your concern and prayers.
March 14, 2020
There’s been a lot going on with COVID-19, and to add to all the craziness, Xavier woke up Friday at 4 a.m. with a severe headache. We called Seattle Children’s neurosurgery and talked with the neurosurgeon on duty. He said to bring Xavier in. (A 3-hour drive) The MRI confirmed enlarged ventricles and he was off to surgery. It went very well. The catheter that goes into the brain had a blockage. It’s the number one reason for shunt failure. Xavier seems more prone to it for some reason. Luckily Xavier felt great and is having a fast recovery. I believe this is in part to the many prayers which have been offered. He is now home and watching a scary movie (The Adventures of Sharkboy and Lavagirl) which he wanted to watch last night, since it was Friday the 13th. We just enjoyed some banana cream pie for pi day. Thank you for your concern and prayers. We’ve been blessed.
As I scroll through this page, I realize that it may be discouraging to some who might be new to hydrocephalus. There might be some who just had a baby and they are trying to learn about it or a grandparent trying to understand about hydrocephalus with their new grand baby. This page is to document the many surgeries Xavier has had. I’m afraid I may have missed some. But I wanted to let any reader know, that most of the time, life is good. We are careful with Xavier. But he actually resents it sometimes and says not to treat him like a baby. He is a boy and loves to do boy things. He rides his bike. We have him wear a helmet. He has an amazing life and most of the time is very happy. It is the occasional pain that he has to go through when hydrocephalus strikes that is heart wrenching. It is dangerous and it requires us to act quickly, especially now that we live 3 hours away from Seattle Children’s Hospital. But today, like most days, he’s playing video games, playing with Hotwheels, playing with trains, riding his bike, or playing cowboys.
If you are new to being a hydrocephalus parent, hang in there. It gets better. These are amazing children. They are hydro-heros.
Xavier’s favorite show is Puppy Dog Pals. He is now 8 years old.
If you want to learn more about hydrocephalus or donate to a charity, the Hydrocephalus Association does a lot for the cause.