Cerebral Venous Sinus Thrombosis (CVST)

I sit here and remember the events surrounding Thanksgiving last year.  My three-year old son Jude was very sick last year.  When we ate the Thanksgiving feast at my parent’s house, he was in the bedroom sick, while the rest of us were at the table.  He got progressively worse after Thanksgiving.

Let me give you a little background.  Jude had no history of major illness and no known allergies.  He had an uncomplicated delivery and was a healthy birth weight.  In fact you can read his birth story here.  The family did not have any health insurance, so the story to come gets extra stressful due to that point.

Jude got sick around 11-15-15.  He was running a temperature of 100-101 for about three days, and then his temperature returned to normal.  Then, he got a head cold for about four days with no fever.  Jude was eating and drinking normally during this time.

The next five days, Jude slowly lost his appetite.  He would throw up once or twice a day.  He was still eating some and drinking a normal amount.  On Saturday, November 28th, things worsened.  Jude became weak and feeble.  He was given sips of water and small pieces of candy to increase his blood sugar.  He seemed to perk up with an increase in activity and normal amount of talking.  However, he still did not want to eat solid food and would vomit if he tried.  The fluids would stay down though.  He continued with the increase in activity into the evening and slept normally.

Sunday, November 29th, he was back to being weak and seemed slightly worse.  Undivided attention was given to help him eat or drink, but now he was unable to keep food or water down.  Around noon, we started to give him a teaspoon of Pedialyte every ten minutes in an attempt to keep him hydrated.  After a few hours, we changed the dose to a tablespoon every ten minutes.  It seemed we were making progress, and about 6 p.m., he asked to go to the bathroom.  When we moved him to the bathroom, he vomited up about three cups of fluid.  Our progress was undone!  It was time to take him to the ER.

We took Jude to our local hospital about 7 p.m. on Sunday evening.  Jude was given an IV of saline for dehydration, and he had blood drawn for tests.  The blood test showed that Jude had a very low platelet count, and he was referred to a pediatric hematologist to rule out any underlying cause to his abnormal blood work.  Las Vegas was the nearest place with a pediatric hematologist on the hospital staff.

My husband and his mom drove Jude to the children’s hospital in Las Vegas about 3 in the morning on Monday, November 30th.  Later that day, Jude was transferred to the pediatric ICU (PICU).  Jude’s vitals were not doing well.  His heart rate and blood pressure were low.  His oxygen saturation was also low.  He looked very pale and responded very little, even to needles.

In the PICU, many different ideas of what the cause of the low platelet count were given, including cancer and blood disorders.  We were also told it could be consistent with him eating poison.

My dear friend and I drove down to Las Vegas on Monday evening to relieve my husband and his mother.  We will call this friend Jean, so she can remain anonymous.  This friend is beyond amazing and left her own family to be with me in my time of need!

While we were in the PICU, we realized that our friends the Stines were in the PICU as well!  Their two month old Knox had stopped breathing suddenly.  You can read more of their story on Fox News.

Knowing that others were there with me through this ordeal helped!  The Stine family was praying for Jude, and I was praying for Knox and for them.

In our first room at the PICU, Jude had a CT scan, chest film, 2 EKG, an EEG, multiple blood tests, and he received lots of IV fluids.

jude-sunrise

In the picture, he has goopy hair from the EEG.  This picture brings tears to my eyes!  I was so happy to be able to hold him!  He was more stable than when we brought him, but he had so far to come!

Okay, a little comic relief 🙂  There was an older lady that did the EKGs.  I don’t recall her real name, but we nicknamed her Cruella de Vil.  She had black and grey hair just like Cruella, and she spoke with a French accent.  She was also extremely rough, especially for working in a pediatric hospital.  She did Jude’s first EKG, and he didn’t care to respond.  The second EKG, he hated it and squirmed and screamed.  This momma was thrilled to see the spark of life and energy!

I slept in the chair in the picture, and my friend slept on the couch like thing that they had.  The doctors and nurses came in every hour or less to check on Jude and shine lights in his eyes.  They also had to come in when his monitors would beep alerting them to his bad vital signs.  In other words, not much sleep was to be had!

Jude’s vitals did improve with the IV fluids, and he actually started eating.  We were ecstatic to provide him chicken, french fries, and ketchup!

Because of his improvements, we were moved down to the pediatrics floor.  The doctors continued to question and question again what was happening or had happened to Jude.  They continually asked us if he was dropped on his head or fed poison.  I did NOT appreciate the implication that I intentionally did this to my child!  I was running on fumes, and I was telling the doctors and nurses anything and everything that I could remember.  I was brought to tears by one of the attending physicians in what felt like an interrogation lasting about 45 minutes.  After the female attending physician left, I asked the kind male nurse, “Was she accusing me of something?”  His response was, “I can see why you thought that, but she was just trying to get to the bottom of things.”

About an hour went by, and the accusatory doctor came back.  I assume that the nurse told her what I had said.  She said that she didn’t mean to imply that I had done anything, but she was “professionally dissatisfied” with my son’s case.

A while later, a resident doctor came to sell us on having an MRI for Jude.  My friend and I were confused.  We had moved out of the PICU.  Jude’s vitals were improving.  What were they looking for with the MRI?  They didn’t really give us a sure answer, but I latched onto the possibility of viral encephalitis and conceded to have the procedure.

We had the anesthesiologist pop in our room and ask why my son was being put under anesthesia for an MRI.  He wanted to make sure that we knew the risks.  We did know.

This MRI was the first time Jude was away from a parent during his hospital stay.  We had to drop him off and say goodbye while they sedated him.  We waited for what felt like forever, ate our Ronald McDonald sack lunches, (side note:  I really have never like McDonalds, but the Ronald McDonald Charities really do some great things.)  and prayed.

Jude came back from the MRI delirious and slurring his words.  We finally figured out he was asking for more chicken, french fries, and ketchup.  He had to fast for the MRI, so he was hungry!  Hunger is always a good sign!

Soon the doctors came in to give us the results of the MRI.  They found a large blood clot in the sagittal sinus of Jude’s brain!  They started administering blood thinners and warned us that we would have to give him blood thinner shots at home.  The good news was that Jude’s brain had sustained NO damage.  Also, the blood clot explained the strange blood test results and stopped the doctors from accusing us of child abuse.  They didn’t know how he got the blood clot or when.  They definitely didn’t know how someone could intentionally cause it!  As annoying as the accusatory doctor was, she was the reason we found the answer to what was happening!

Because of the seriousness of his diagnosis, we were moved back to the PICU for close monitoring.  We were in a different room in the PICU than before, and this time we were in the room right next to the Stine family.  They had many tear filled visitors, but they also stood around baby Knox and sang worship songs.  I know that some of the staff found it annoying, but it truly touched my heart.

In the new PICU room, Jude had to be held down to redo his IV.  This is so hard for a mom to do!  I held him down and looked away with tears in my eyes.

The accommodations were not as nice for visitors, and Jean slept on the floor in the PICU while giving me the couch bed.

Some of the highlights while we were in this room is that one of the doctors came in and asked me if Jude has been throwing up for a month!  Ummmm, read the chart!  That’s not what happened!

Jude was one of the most stable in the PICU, so we moved again down to the pediatrics floor.  Doctors still came constantly in and out of our room.  At one point, Jude was watching a movie on the couch.  He was totally into the movie, and a doctor walked in to check on him.  She could not get him to look away from the movie, and she became worried that he wasn’t okay.  She proceeded to yell in his face to get his attention.  It scared my friend Jean to tears.  He was fine.

A body ultrasound was ordered to make sure he didn’t have any clots in his legs or arms.  He was feeling feisty, and he would not hold still.  They had to give him something to settle him down 😦

We also got a visit from a dear friend.  She brought coffee and helpful medical knowledge.  She was going through nursing school, so she taught me how to put the leads on Jude’s chest.  Jude would often pull them off, and the alarms would sound.  The nurses had a higher patient load on the pediatrics floor, so we did a lot of care ourselves.  We mastered taking Jude to the bathroom with his IV cart and also how to redo the leads on his chest.

hulk-leads

It was time for Joan to leave, and a second friend, who we will call Patsy, came to take her place.  Yes, I have amazing friends!  Since she was coming from our home town, she brought changes of clothes, money, and an air mattress for her to sleep on.

The next day, my husband was finally able to come back to the hospital.  On top of that, Patsy and I were blessed with an amazing opportunity to get a full night’s sleep!  My husband stayed with our son, and Patsy and I sneaked away to a free stay at an empty house in Las Vegas for a night away.  I got a shower without worrying that an important specialist would finally come to talk to me the moment I went into the bathroom.  On top of that, they didn’t have showers in the PICU rooms.  They did have a community shower in the family room.  It was still private and all, but all I could think of was athlete’s foot!  I never took a shower while in the PICU.

While Patsy and I were away, my husband learned how to give my son blood thinner injections.  He would require injections twice a day for 3 months.

Jude still was dealing with a lack of appetite, but he was getting more ambitious.  My husband and son got to take a little walk around with the IV cart in tow.  Jude ended up throwing up from the increased activity.  😦

Hubby left and Patsy stayed with me.  Jude gradually regained some energy but nothing compared to his usual vigor.  A mom with a very sick kid gets strangely excited when they have enough energy to be naughty.  One of the nights, Jude decided he didn’t want to sleep in the ridiculous crib with bars all around him.  He wanted to sleep on the couch with mommy.  This of course was against hospital policy, for safety reasons.  Jude then screamed for hours saying, “I want out.  I want to sleep on the couch, please!”  He really did say please every time!

Since Jude was improving, Patsy encouraged me to leave the room and take a walk.  It has been so long since I had left!  I got lost in the halls, and it took me two times around the circle to find our room.  I actually went into the wrong room once!

The next day the IV was removed, and Jude was beginning to eat more.  It was not nearly enough in mommy’s opinion.  I learned to give Jude the shots he would need, down to drawing the meds, cleaning the spot, and administering.

Miracle of all miracles, we were finally approved for medical insurance on the last day!  Oh my goodness!  So many tears were shed from this worry!  At least once a day someone would come and ask how I was going to pay the bill.  I would just cry and tell them to call my husband!  God had it all in hand though!  We were extremely relieved to have the insurance pay for the $150,000 bill from our stay!

It was finally time to be discharged.  I’m pretty sure that the hospital staff was very annoyed by me!  I made them add a decimal to the discharge papers!  The papers said that he would receive 13 mg of the blood thinner, when I knew that the dosage was .13 mg.  That’s a huge difference!  I’m just saying!

As we were getting packed up, sweet friends arrived to see us, and they were able to help us with all our stuff down to the car.

Our eight days in the hospital were finally over!  Patsy drove us home in her car.  It was so wonderful to be back home, but this momma was terrified of him relapsing.  I still had a very sick boy on my hands.  He was still throwing up once a day for about a week after we got home.  We struggled with the blood thinner injections twice a day, but my little man was a super hero!

I couldn’t have gone through all of this without the strength from Jesus and the love and support of all my friends!

One sweet friend set up a Meal Train!

Several friends had fundraisers and sent money!

Friends and family had food delivered to the hospital!

My sweetest friends sacrificed their time and well-being to help me!  Jean brought home a sickness to her family, and they were sick for weeks.  That’s sacrifice!

Another dear friend and her quilting group made pin cushion owls to raise money for us!

judes-owls

This was the beginning of our story, our first hospital stay.  There was another hospital stay and many more procedures to follow.  This story is long enough though!  Rest assure, Jude is much better currently.  Hope is real!  Jesus is real!  I wrote this story with the desire to share some hope and also to possibly find someone else who has gone through an experience with a child as young as ours with CVST (see title).  I have yet to find one!  Please share my story, so that I can encourage someone else who may be going through the same struggle.

To date, we are still not aware of the cause of Jude’s CVST.

 

A Fiscal Fast: the what, why, how of it

Hi!  Long time no see!  I’m still around, and I want to get back around to doing some more blogging.

Last October, my family had what we chose to call a fiscal fast.  You may call it something different, but it was good for us.  Let me outline the what, why, and how of it 🙂

What:

  1. Avoid unnecessary spending
  2. Spend money on only necessary items.  Our list included below *
  3. Yard Sale to sort what we have and clean things out
  4. Try to recruit others to join you!

*gasoline for the car, utilities, mortgage/rent, credit card bills, student loan, snacks for our Bradley® natural childbirth class, eye glasses for our son, eggs (We support a local farmer and didn’t want to short change them for a whole month), built in splurge to buy lunch on yard sale day

FISCAL-FASTWhy:

  • To answer the question of whether or not we could survive if the grocery store wasn’t available for a month
  • It’s good to rotate food in the pantry and freezer to make sure it doesn’t go bad.
  • To save money
  • To practice some self-control

How:

  • Plan ahead!
  • Make a month of meal plans.  I just printed out a calendar page of the month that we chose.  My goal was to plan dinner for 31 days.  We would mostly eat leftovers for lunches, but I did plan an occasional lunch.  For breakfast, we mostly ate eggs.
  • Right before the month begins, stock up on fruits and veggies that will keep well.  Since we were in the autumn season, I stocked up on apples, squash, carrots, celery, etc.
  • Start going through your stuff to have items to sell for a yard sale.

yard-saleWhat did we eat?

  • We ate a lot of soups, frozen and canned.  We also had frozen meals that had been in the freeze for a while (i.e.- enchiladas, lasagna, etc.)
  • CONFESSION:  We decided that we could allow ourselves to go out to eat once, because we had a gift card.  WELL, I neglected to remember that a tip is required at a restaurant.  We paid for the tip, of course.  I couldn’t short change our hard-working waitress, because of my oversight.

What did we learn:

  • We learned that we could do it!
  • We learned that we had the self-control to make it happen.
  • We missed the option of running to the store for this and that, but we learned that our friends were willing to barter or share here and there 🙂  We have some pretty nice friends!

We are planning to embark on this fiscal fast again for October 2015!  Care to join us?  My allowances for the month of October will be the same expect for we don’t currently have a childbirth class, and I will also make a day trip out of town to get new eye glasses for our son.

How we keep Christmas costs down

Ready for a shocker? I don’t “really” buy Christmas presents for my children and husband. Okay, I did say “really” 🙂 Let me explain.

My husband and I have decided that when it comes to Christmas that we should buy as little as possible. What that normally means is that we don’t buy each other gifts and we only buy stocking stuffers for the children.

The stocking stuffers are normally dollar store purchases and fruit. Fruit? Yes, fruit 🙂 The stockings are the one item that the children are allowed to open as soon as they rise. My husband and I don’t want to get up at the crack of dawn, so we fill their stockings with activities and something to snack on…hence the fruit.

Before you get the wrong impression that my children don’t know the joy of Christmas or that they don’t get awesome presents, let me explain more. We have been blessed with very generous family members. They give the kids tons, from clothes to dolls and gadgets. We don’t need to go overboard with presents. They are getting plenty.

What do we do for presents for each other? Well, we normally give gifts that don’t hurt the pocketbook. We do massages and dates. I cash in any points that I have earned through various programs to get a few gift cards. I might dip into my Paypal stash that I’ve earned through selling stuff on E-bay.

My situation may also be helped by the fact that my children have never believed in Santa Claus. They know who each present came from, and they are grateful. They have realized that the presents don’t normally come from their parents, and we have explained this to them. Mommy and Daddy provide for them with presents like food, shelter, and clothing. They get plenty of toys and goodies from everyone else.

We have lots of Christmas fun together that doesn’t involve presents.  On the Friday after Thanksgiving/Black Friday, we dig out the Christmas decorations and blare the Christmas carols.  We put up the tree, and the kids put up the ornaments.  They get an ornament every year from their grandma, and they love remembering the years past.  Fun is had by all, and we don’t spend a dime 🙂

We do buy presents for others for Christmas.  We try to make as many homemade gifts as possible, and the kids normally join in the present making.

I just wanted to encourage you that it is possible to not overdo this holiday. You might not be blessed with such generous family members, but you can still cut back to a reasonable level. Christmas isn’t about greed or how much we can get.  It is about the celebration of Jesus and his arrival in this world.  He is the greatest gift, and we should be content even if we have nothing but Him.

The story of one javelina

Once upon a time during a warm February in Arizona, a javelina found herself face to face with a seasoned hunter. The javelina lost her life that day to feed a family of 5 (almost 6).

The javelina carcass was field dressed then hung in a tree while it waited to be brought to the growing family.  It would soon be skinned.
The carcass arrived to the family on a Sunday afternoon, and the head of the household, a strapping lad, spent 2 hours cutting the meat off the bone so that sausage could be made.

The growing family, although very partial to not eating factory meats, had not yet butchered any of their own food as of yet. The mother, a homely yet well-meaning woman, did not want to touch the carcass with its hairy legs and cloven feet.

After the meat was cut into small pieces, it was placed into the fridge.  The next day (Monday), a grocery trip needed to be made to procure the supplies needed to finish the sausage project.

Much to the rambling mother’s chagrin, the family learned that game meat is often too lean to use for sausage.  So, they had to go buy some “factory” meat to add fat to the sausage.  The homely mother would have gladly run somewhere to get some homegrown fat, but that somewhere was not available.

So, Monday evening was spent grinding javelina and “factory” pork at about a 50/50 ratio.  The growing family ended up with 10 pounds of breakfast sausage and 20 pounds of Italian sausage.  Even the young discerning mouths of children think it tastes pretty good. 🙂  The rambling mother thinks that the breakfast sausage recipe needs some tweaking, but things turned out pretty well.

The javelina = lots of yummy meals!

“His Walk” and Trusting God with birth control?

The chapter we read from The Power of a Praying Wife was “His Walk”.

Things that touched me:

  1. Stormie shares her observation of godly men.  She writes, “I’ve seen men who were unattractive by any standard change radically as they learned to walk with the Spirit of God.  As His image became imprinted upon theirs, they developed a richness of soul, a glorious purity, and an inner confidence of knowing what direction they were going.  This gave them a strength and a sense of purpose that is not only attractive and appealing, it’s magnetic.”  I pray that God gives our husbands this strong sense of purpose and direction.
  2. Stormie reminds us of what the Bible says about our walk.  She says, “But ‘narrow is the gate and difficult is the way which lead to life, and there are few who find it’ (Matthew 7:14).  Pray for your husband to find it.  Pray that he is guided by God’s Holy Spirit.  Pray that he stays on the path by having faith in God’s Word, a heart for obedience, and deep repentance for any actions he takes that are not God’s will for his life.”  Amen! I pray that not only our husbands find the narrow path but that we do too!  It will be difficult, but the rewards are out of this world! 🙂

Things that I respectfully disagree with.

  1. Stormie makes reference to Isaiah 35:8 which says, “And an highway shall be there, and a way, and it shall be called The way of holiness; the unclean shall not pass over it; but it shall be for those: the wayfaring men, though fools, shall not err therein.”  While referring to this verse, she writes, “The best part about walking on the Highway of Holiness is that even if we end up doing something dumb, we still won’t get thrown off the path.”  I agree with the essence of what she is saying that we are not thrown out of the kingdom of God when we make mistakes, but I don’t agree that this verse in Isaiah is referring to the Christian walk at all.  I feel that the Scripture is applicable to Israel after the second coming and that the Scripture was taken out of context.

Trusting God with birth control?

We may say with our lips that we trust God with everything, but does that really translate into our lives?

Of course, “everything” covers a lot, but I have chosen to write about the things that I find are most common to not release into God’s hands.

The thing that is fresh in my mind is family size.  Seeing that we are unexpectedly pregnant and going to be having our fourth child, this one hits home especially.

I thought I trusted God with this, but how did I show my trust in Him?  Really, I just did my own planning and expected that he would bless it.

I have a dear friend who is always asking me about my thoughts on birth control.  I, more than once, have told her that it is dependent on each person’s convictions and that we need to obey what God is showing us and the guidance of our husband.  She would contend that maybe God wants someone using birth control to have a large family, but they are preventing what God wants with the birth control.  My response was always that God is bigger than our little methods.  If he wants someone to be pregnant, they will be with or without birth control.

I didn’t actually ever think that God would show that last statement so true!  He did with this surprise pregnancy,

Because this pregnancy wasn’t in “my plan”, I questioned God’s timing and judgment on it.  Really?  How dare me!  He is the God of the universe!  He always knows better than me!

Isaiah 55:8  “For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD.”

Because I know that many of you are having an inner struggle with the birth control stuff, let me explain my personal thoughts and convictions.  I did say that this is my “personal” stuff, and I’m not going to dictate to you what you must do.  Let God guide your own conscience.

Okay, the first question that I have is when is life created?  I know, deep huh?  I personally believe that life is created when the egg and sperm meet and create a new life-form called a zygote.

After fertilization of the egg, the zygote must find a place to rest its head, figuratively speaking.  This is called implantation.

This is where the first birth control question comes.  If a zygote was created because the egg and sperm met and it isn’t able to implant because of the form of birth control, is this an abortion?  Was a life terminated?

My husband and I, after much discussion, decided, many years ago, that we don’t want to walk this moral line.  We decided that our birth control methods should only prevent fertilization not implantation.  In other words, we chose to use a method that prevents the sperm and egg from meeting.

Okay, some of you may be saying, “Well, that is exactly why you ended up with an unexpected pregnancy.”  Yes, that may be true, but was that wrong?

Am I wrong to use any birth control method at all?  I don’t claim to have all the answers on this issue.  I know this may have stirred up a lot of thoughts, but please be kind.  I would love to have a reasonable discussion on this topic.

If you want to read more about this topic (I don’t necessarily agree with all these sites):

http://marshill.com/2008/01/06/christian-birth-control-options/

http://www.abortionfacts.com/learn/birth_control.asp

http://skepticalchristian.com/birthcontrol.htm

http://www.equip.org/articles/should-christians-use-birth-control-

Your assignment for week 25: Read Chapter 24 of The Power of a Praying Wife “His Talk”. What touched you? Any disagreements? Pray that your husband will have a watch over his tongue and be wise with his words. This week, ponder trusting God. What areas are the most difficult to trust God?  Give me some comments with suggestions 🙂  I only have a couple more ideas.

Announcing a wonderful surprise from God!

Hello there, friend!  Merry Christmas! Happy Chanukah! Did you know that life is full of surprises and so is our Heavenly Father?  No matter how much we plan and scheme, things don’t always turn out that way.

I found out on November 30th that God has decided to surprise us with another baby!  I’m not that far along, and of course, we are not out of the danger zone yet.  I’ve been pregnant 3 times before, and I have no history of miscarriage.  I always announce my pregnancy earlier than many, but I’ve never been sorry about that.

I am very overwhelmed by this surprise.  My youngest is only 8 months old!  I’ve never had kids this close before, but God knows what he’s doing.  He knows I need a bigger car to fit all of the kids.  He knows that I need the money to pay for the midwife.  He knows that I just lost all my pregnancy weight and am kinda sad for the prospect of gaining it back.  He knows that children are a blessing, and sometimes blessings come at unexpected times.  He knows the space and resources that we have.  He knows that we will love and cherish this little life just as much as any of the others.

If you want to scold me for being irresponsible and having too many children, take that up with God.  I need your love and support.  Please keep our growing family in your prayers.  By the way, a boy would round off our sets nicely.  That would mean 2 boys and 2 girls.  That would work really well with the bedrooms too.  Of course, God already knows that too.

Be anticipating another beautiful home-birth story and of course, pictures of the adorable little surprise gift 🙂

How to bless your old grandpa

On October 17th, my sweet grandpa turned 90 years old.  I knew that he really doesn’t need anything, and I don’t have much money.  I decided to write a list of 90 reasons why I love him.

The list was filled with all kinds of reasons like:

  • You smell good
  • You served our country
  • You make yummy salmon
  • You love …..
  • You’re kind
  • You’re punctual
  • You play a mean saxophone

The list took quite a while, and I had to enlist the help of my friends and family.  My grandpa’s reaction made it all worth it.  He said that nothing I could have bought would ever compare to how much it meant to him.  He bragged to all his friends about how wonderful it was.

I wanted to share my idea with you, so that you could bless your grandpa, grandma, or someone special with it.  Grandpa told me that I should tell everyone, and I was so tickled by how much he enjoyed it.  Thanksgiving and Christmas are coming.  Maybe you can try this. 

Have a blessed day!