Looking Back and Feeling Thankful

It's been just over three months since our last big hospital stay.  During that time we changed his formula (still maintaining the ketogenic diet) and he had his tonsils and adenoids taken out.  We were in the hospital nearly a month.  It felt like the climax to a three year nightmare.  There is a song (Need you Now by Plumb) that I clung to during this time.  One of the verses says "Standing on a road I didn't plan.  Wondering how I got to where I am.  I'm trying to hear that still, small voice.  I'm trying to hear above the noise."  At the time, that's exactly what was going through my head.  How did I end up here?  I was trying so hard to listen to the voice of God but the clamor of my own crazy, fearful thoughts kept getting in the way.  And, dear God, WHY did we continue to go through the same things over and over again?  By his grace, I was able to push my own doubts aside and really listen to what I felt he was telling me to do.

That hospital stay was a turning point.  For the first time in three years, Levi is doing very well!  He is growing chunky now and looking so healthy.  He started a therapy intensive school last month, which has already done wonders for his strength and stamina, not to mention his interest level.  He smiles daily, an answer to a prayer I have prayed for years, that he could just be out of pain and happy.  He's working to gain control over his arms and legs.  Sure, there's still a long road to walk down, but finally, thankfully, we have put the hardest and most frightening things behind us and can look toward a bright future.

No matter how bleak things look, no matter how frightened you are, there is ALWAYS hope in God.  Don't give up.  Just keep believing, and don't give up.

A Merry Christmas

Levi participated in several holiday related activities at school this month.  He went shopping for us, saw Santa Claus, and sang carols.  Christmas Eve we had dinner at Aunt Heidi's house and then went to church for the candlelight service.  It was beautiful as usual. 

Christmas morning dawned early.  We had all our family at our house for a big dinner.  What a grand time!

Levi is still doing well!  It's been three months now since the last time he vomited (something that used to be a daily occurrence).  In only a few weeks of school, we notice that he's grown much stronger.  He is more interested in everything around him, and has the desire and motivation to hold his head  up better.  He's been so happy!  For so long I prayed that he would feel better and get to be happy, and now those prayers have been granted.  It's a glorious time!

He has had a bit of an increase in seizures this last month, since taking the last step down from Phenobarbital, to just a quarter pill.  We were scheduled to completely stop it on January 1st, but have decided to extend it to February 1st, due to the seizure increase.  Even still, they are way below the number that he used to have every day.

I hope you all had a Merry Christmas and are looking forward to a Happy New Year!

 

Third Birthday and First Day of School

Wow this day has gone by fast!  Levi turned three today!  Mom and I drove him to school for his first day.  He cried at the beginning, but by the time we left he was calmly laying on his side looking at toys.  When Tommy and I picked him up we peeked in the window before heading in.  He was sitting in his chair like a big boy, relaxed.  The teacher told me that when they took his braces off after we left his foot seemed to be hurt, so they called the physical therapist in to look at it.  She thinks it's injured.  His ankles have been tight and begun to turn inward over the last few months.  I'm not sure what's wrong but he has an appointment with the pediatrician in the morning.  Hopefully it's just sore from being stretched more often than he's used to.

As soon as we got home he had a warm bath and put on his new fleece birthday jammies.  Well who can resist the comfort of those?  He fell right asleep, and has been napping off and on ever since.  The poor little guy is worn out!

Graduation from Early Intervention (at home therapy)

Dressed for the first day of school!

Cuddling with Tommy after school :)

A Perfect Day

I think yesterday may well have been the very best day Levi has ever had!  He woke with smiles, and even though he was happy, I was a bit nervous about the drive to the neurology office 40 minutes away.  He usually screams in the car, and in strollers as well.  He was content to watch out the window and the way the sun played on the roof of the van with not even a hint of fussing, all the way to the office.  He sat in the stroller the entire time we were there, and even rode home happy!  To top it all off, we went out to eat, and he sat in his new Squiggles seat (a cross between a wheelchair and stroller) and nodded off while we ate.  It was truly a glorious day!  Today I took him shopping for school shoes (he starts in less than 3 weeks!) and clothes.  He sat in the stroller, let me try on countless shoes, charmed a few ladies (we visited with our friend Sharon), and remained quiet in the car while we did some running.

I feel like we've finally turned a corner for the better, and for good this time!  I'm not entirely sure what we did last month to make everything better.  It may be one, or the combination, of removing the tonsils and adenoids, changing formula, and starting the motility med, Reglan.  I'm thinking that his throat may have hurt all the time.  His tonsils were always red and bumpy.  Our speech therapist, Kathryn, wonders if maybe he was spiking small infections.  That makes so much sense!  For over a year I was concerned because he would run low grade fevers for days or even weeks at a time.  The doctors were never worried about it.  He hasn't done that since the surgery, though.

Another benefit of the tonsillectomy is improved swallowing.  He has been sucking on his hands and whatever else he can get into his mouth.  In July of 2012 he stopped taking the bottle, and stopped sucking, so this is definitely a big deal!  He chews on his toothbrush and toys, and your finger if you're unlucky enough to get that close.  I scheduled a swallow study for the day before Thanksgiving, and am praying that he does well.  If so, he'll be able to eat with us for the holidays!  He's not been allowed to have anything to eat or drink by mouth for the last year and a half.  I'm so excited I can hardly contain myself!

It's so nice to have good news to report!  Seeing him happy and growing is worth all that we've been through the last few years.  Please continue to keep him in your prayers!

Levi riding in stroller.

Speech therapy with Miss Kathryn.

Sleeping in Squiggles seat.

Following the Voice of God

Last weekend we decided to take a trip to the mall with Levi, in his new wheelchair.  He wasn't too thrilled with riding instead of being carried, and let us know about it in no uncertain terms!  A lady came up to us and asked if he was ill, so I explained a little bit about the meningitis and subsequent health problems.  She said she hoped we didn't think she was crazy, but God had just told her to come over and pray for Levi.  Even though she was nervous to approach us, she did it anyway.  She laid her hand on Levi's head and prayed for him.  We had a nice conversation and met her young son.  She was such a cheerful, lovely person.  Thank you, Diane, for following the voice of God and praying for Levi!  You will never know how much that meant to us!

In the last month since leaving the hospital, life has definitely had its ups and downs.  He's had good days and bad days.  Thankfully, the bad days seem to be due to teething and gas instead of the awful issues he's had in the past.  I'm thrilled to report that he has not thrown up at all!  He is tolerating the new formula very well, and is almost up to goal bolus feeds again.  He's gaining weight and growing stronger.  He is sucking once again, and has learned to get his fist, fingers, and toys in his mouth and chew/suck on them.  He's learned the hard way not to bite too hard.  We are introducing flavors to him on a spoon, and I'm hoping to schedule a swallow study for January in the hopes that the swallowing issues have gone away with the tonsils and he can begin to eat small snacks.

We had his IEP meeting with school last week.  It's hard to believe he will be going to school in just another month.  He'll be getting therapy all day every day, which will be so good for him, and will strengthen his little body.  Thank you all for praying for our little Levi!

Watching TV with friends.

New Squiggles Wheechair

Home But Not Home Free

After 24 days inpatient, we finally went home on the 4th.  Levi kept having inconsolable screaming fits, so we ended up back in the ER the night of the 5th.  I needed to know that all was well with his tummy, and thank God it was.  He also had an x-ray of his hip since he's had hip dysplasia, the doctor wanted to be sure that his tight muscles hadn't possibly dislocated it.  That was fine as well, and actually showed growth from last year, so that was a definite plus!  They wanted to give him a dose of Ativan, which other doctors have wanted to do, and I've been against it because last year it caused him 2 hours of continuous seizing, even though it is a seizure recovery drug.  We figured since we were already in ER we might as well try it.  It did  cause extra seizures, but it didn't last long.  We brought a prescription home to use instead of oxycodone.  It's possible that all this unhappiness is due to withdrawal from morphine/oxycodone (which metabolizes into morphine).   He fell asleep on the way home and slept all day.  Yesterday was a little better, he had some wakeful moments without crying.  Our neurologist increased the Baclofen dose in case the screaming is caused from tight muscles, due to cerebral palsy.

Today has been a nightmare of screaming again.  I really don't know what's causing it.  It could be anything from pain to anxiety to anger.  We gave him a dose of Ativan and he finally fell asleep, and it didn't cause any seizures.  We see the neurologist tomorrow, and will hopefully be able to figure some things out to help Levi.

GJ Tube Fail

I have made no secret of the fact that I don't like the GJ tube.  He has still been gaggy, has still vomited, and still screamed.  I don't feel like it fixed anything, and I've always had a feeling that it was uncomfortable for him and possibly causing him pain.  I've been told by every doctor that it doesn't, but I still couldn't be convinced.  I went home last night (thanks to Moga for staying with Levi!) feeling like I should just shut my mouth because no one was hearing me anyway.  I felt like the doctors were all sick of listening to my concerns.

Even though I was home, I just couldn't sleep.  Everything kept playing through my mind, and I knew I had been defeated, that I would just have to accept their answers and live with the GJ tube.  I talked to God, and had a wonderful prayer session. 

This morning when I woke up I found out that the tube had clogged.  Immediately I felt that it was an answered prayer, and hoped that it would have to come out and I could go back to the mickey G button.  The first day of our admission over three weeks ago we met with the doctors and dietitian and decided to change formula, etc.  We had a plan, the last step of which would be a possible GJ tube if everything else failed.  I wanted to give that plan a chance!  If the GJ tube had to come out anyway, I didn't see a reason why we couldn't go back to a G tube.

I prayed about it and decided if the tube was able to be unclogged, then of course we would just keep it.  But if it couldn't, I would fight for the G button.  The outcome was in God's hands, and I found comfort in that.  It couldn't be unclogged, and WOW did I have to fight to change it! Even our primary GI doctor didn't agree with me, but I stood firm.  They did everything but tell me I had no choice, and they certainly made it seem like I didn't.  So I flat refused to sign for a GJ tube.  Those of you who know me know how very much this is outside my character, and my comfort zone!  I hate confrontation!  Thankfully by the end Patrick was here and he supported me.

Did I make the right decision?  Only time will tell.  All I can say is that I felt beyond a shadow of a doubt that the GJ was causing problems.  Levi's quality of life rests on my shoulders, and I always want to do the very best for him.  We can't see into the future.  We can only make the best decisions that we can with the knowledge presented us right now.  There was really no "right" answer here, just a choice between two different paths.  I pray the path I chose will be good for him.

To Go Home or Not To Go Home...That is the Question!

Levi is much improved in many ways.  He seems to be almost completely healed from the tonsils and adenoids surgery.  He just has a bit of residual discomfort when yawning or coughing.  As we hoped, this did cure his breathing problems.  He can breathe easily and quietly now, even with his mouth closed!  I wonder if his throat was sore much of the time before the surgery.  The tonsils were always red and bumpy.  I'm hoping this also leads to better swallowing in the future, so he can begin to eat some things by mouth.

Even though he now has a GJ tube that feeds directly into the intestines, and it was my impression that he should tolerate feeds much better, he has not.  Within two days after it was placed he was gagging and vomiting again.  I was concerned that the tube had slipped, but the doctors were not concerned.  On Sunday he had a wonderful day, sitting up on our laps, holding his head up, interested in his surroundings, but then for most of yesterday he was constantly whining, gaggy, and did end up throwing up with "coffee grounds".  I decided to take him outside to the playground, and that perked him up substantially.  He had a great night, we both had the best night's sleep since the surgery.

I'm so ready to go home, but I don't want to get there and have to come right back.  I'm still concerned about the GJ tube.  Thankfully Dr. Mangalat is back on service today, and she knows him very well.  I plan on asking if she will take an x-ray to be sure the tube is in the correct position, and I have many more questions for her.  It occurred to me yesterday that at home he was no longer tolerating continuous feeds, and maybe that's why he is still having issues.  Maybe he needs bolus feeds instead, in which case we would have to revert back to the g-tube (which wouldn't hurt my feelings, for some reason I really don't like the GJ tube!).  So I'll be waiting with bated breath to see her today!

On a very bright note, the seizures have decreased dramatically!  We see one here or there, but they are all but gone!  It must be due to getting his entire calorie and fluid requirement. I couldn't be happier about that!

Another Eventful Day

In the last 24 hours we have moved from PICU to TCU to the general floor, where we usually are.  Levi has had a very good day, except for a couple bouts of pain.  He was able to go 6 hours between Morphine doses, so that is an improvement!  He's still on humidified oxygen at 21%, which is room air. 

Levi's G tube was a small mic-key button that fit snugly to the skin, was easy to use, and wasn't in much danger of popping out.  Even if it had come out, I could quickly and easily replace it.  The type of GJ tube they placed is a long catheter that splits into a Y, one end feeds into the stomach, and the other into the intestines.  I'm definitely not a fan of this.  Since it extends so far out, he won't be able to sleep on his tummy, which is what he prefers, and most of the time insists on.  I was hoping that it could be replaced with a mic-key GJ tube before we go home, but that is not an option.  The GI doctor wants us to wait until the tube fails before replacing it.  When a GJ tube fails it has to be placed under sedation with x-ray.  Not the best news, but since we are trying this temporarily I can be a big girl and get over my trepidation.

He had the ultrasound of his kidneys today to check for kidney stones, a common side effect of the Ketogenic Diet.  There are no stones!  Both kidneys and bladder are fine.  Great news!

Right now he's resting well, listening to instrumental praise and worship (his favorite Pandora station), and ready to go to sleep.  I hope tomorrow brings even more good news for Levi!



 

The Power of Prayer

Yesterday morning at this time life was pretty hard.  The ND tube had been placed, yet again, in the wrong area, Levi had coughed up blood and his nose was bleeding.  The secretions from the surgery were still flowing fast and thick.  There was a plan for the day but a lot of things were up in the air.

We asked you to pray.  We saw so many of our friends and family not only praying with us, but sharing Levi's blog and asking prayer from their own family and friends.  We felt the strength and support!  I'm pleased to announce that a mere 24 hours later, Levi has gotten much, much better!

Yesterday afternoon they attempted, and succeeded, in placing the GJ tube that will feed into the intestines, and feeds were started.  After he woke up from the procedure, he stayed awake for a while, looking around, more alert than I'd seen him since the surgery last week.  The continuous secretions coming from his nose and mouth suddenly started drying up, and although he still has some, it's much more manageable.  The coughing episodes have decreased in length, severity, and frequency.  He still needs Morphine a few times a day for pain, but it keeps him comfy.

This morning he is very alert.  He will no longer allow us to point his face downward so the secretions can drain out.  He's being stubborn, and I think that's a great sign that he feels better!  The oxygen he's been on constantly since the surgery, sometimes getting as much as 100%, has weaned down to room air and he's holding well on his own.  He's just breathing humidified air now, to keep his airway moist.  Best of all, he's been downgraded to TCU status, and we'll be moving up there sometime today!

God is so good!  Thanks to all our prayer warriors who have continued to pray for him through the years, and pressed in for us during this difficult time.  We appreciate you!