Saturday, December 28, 2013

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!


Tuesday, December 3, 2013

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 :)

Thursday, November 14, 2013

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.

Thursday, October 31, 2013

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

Tuesday, October 8, 2013

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.

Thursday, October 3, 2013

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.

Tuesday, October 1, 2013

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!

Thursday, September 26, 2013

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!


Wednesday, September 25, 2013

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!

Tuesday, September 24, 2013

ND Tube Fail

So they tried to place the ND tube three times yesterday with no success, one time it even ended up in his lung.  They wanted to try one more time today before they sent him to have it done in x-ray.  I didn't want that but I allowed it to happen.  He started coughing blood.  Again, it went into the lung. I refused ND tube placement and opted for GJ tube placement.  The PICU doctor had no problem with that, so we are consulting GI.  The previous GI doctor on service thought it should be placed with endoscopy rather than x-ray, and I hope this doctor agrees.

The thing is, he has a long post-op recovery period.  Even though ENT says this shouldn't be from the surgery, he just takes longer to recover.  He screamed for 8 weeks after the colostomy surgery. Unfortunately the tonsils and adenoids absolutely had to come out.  He was 70% obstructed, and the sleep study showed 15 sleep apnea episodes in one hour.  One doctor told me it's the worst sleep study he'd seen.

He really needs prayer!  He's weak from surgery, no nutrition, multiple tries for ND tube, x-rays, surgery, finger sticks every 6 hours to check blood sugar, and more.  He needs strength and a touch from God.  Please take a moment and pray hard for Levi.  He needs prayer warriors today!  And for me, could you please pray for wisdom?  Thank you all from the bottom of my heart, I appreciate all you do!


Monday, September 23, 2013

ND Tube

Today Levi will be having an ND tube placed.  This is a tube that goes through his nose and into the intestines so his feeds will bypass his stomach and empty directly into the intestines.  The hope is that these feeds will be better tolerated and the vomiting issues will subside.  If the ND tube works well, then we will most likely proceed with a GJ feeding tube, which is like the G tube he currently has, but will have an extra port that feeds into the intestines.  This is more permanent than the ND tube, and has the added benefit of being more what he's used to, and he won't have a tube down his nose and tape all over his face.  Another benefit is that the GJ tube can be as permanent or as temporary as we want it to be.  We will probably end up feeding through the intestines for several months to give the stomach rest, and then maybe try regular feedings again.  I will just be happy if this new feeding style will remove the gagging/vomiting/bleeding problems!  Having his tonsils out may also help with that as well, as there is the possibility that his gag reflex was overly sensitive due to the enlarged tonsils.

He has been resting very well today!  It's so good to see him relaxed!

Sunday, September 22, 2013


Around 4:00 this morning Levi started having more respiratory issues, continued constant secretions that had to be suctioned almost nonstop at times, coughing, etc.  He was moved to the TCU, where the pulmonologist laid him with his head slanted downward so the secretions would flow out of his mouth to gravity. That worked well for a couple hours, but the issues returned even more intense, so he was sent to the pediatric ICU. 

The PICU doctor is interested in getting to the core of the issue.  Are the problems stemming from the tonsil and adenoid surgery, from his persistent GI problems, etc?  I'm thrilled to hear that he wants to get to the real problem and treat that, instead of just treating the symptoms. 

A belly x-ray showed that he has a huge air bubble in his tummy, presumably from swallowing so much air these last several days.   They are replacing his mic-key button g-tube with a foley catheter to allow the air to drain out so it doesn't enter the intestines and cause even more problems.

Right now he is resting comfortably on his tummy in an odd position that allows his secretions to drain.  He is more comfy than he's been all day!  I will update as I have info.  Please continue to pray for Levi!


Saturday, September 21, 2013

Resting Better

Last night was again a bad night for Levi.  Same issues as before, a lot of coughing and suctioning, and just can't get comfortable.  He's been elevated on his back and sides since the surgery.  Since he much prefers sleeping on his tummy, we decided to try turning him and see if it would help.  It did!  He's been resting well since this morning!  He's not coughing much because the drainage isn't constantly running down the back of his throat, and he actually is getting that restful, healing sleep that he's so desperately needed.  I hope this is the turning point and he will feel better and better from here on out.  Thank you to all our prayer warriors out there!  Your prayers are felt!

Friday, September 20, 2013

Last night was much better for Levi.  He only coughed and needed suctioned every 2 or 3 hours, rather than every 30-60 minutes as he had the previous night.  He's breathing fast today, but I think it's because he's actually breathing with his mouth closed!  He hasn't been able to do that in a very long time!  The fact that he's able to even though he's still swollen and congested is a very good sign indeed!

He's still sleeping around the clock, but since he's getting Benadryl that's not surprising.  Sleep is healing.  He's still on humidified oxygen, but has been weaned from 60% down to 40%. He had an Albuterol breathing treatment to help open the airways, and an anti-inflammatory to help with that as well.

Since the breathing treatment, he's needed a LOT of suctioning and he's been coughing more, heart rate and respiratory rate increased, so they took another chest x-ray, which showed improvement from the other day.  If I understand this correctly, part of his right lung is a bit collapsed, which can happen after surgery.

He doesn't seem to be having pain, thank God, but he's still miserable.  Please keep him in your prayers!

Here's a short video of his sweet smiles just before he went into surgery.


Wednesday, September 18, 2013

Surgery Update

The surgery went very well!  It has been extremely difficult for him, though.  The first several hours were okay, but once night fell he was in a lot of pain.  After a lot of trial and error, they doubled his dose of morphine, which quickly made him feel much better and he was finally able to sleep. 

He has a lot of secretions in his nose and throat due to the surgery and not wanting to swallow, and the more he cried the more was produced.  The poor little guy had dried yuckies pasted to his cheek this morning.  Michelle gave him a nice bath and cuddled him while Lynda changed his bed, and he's been sleeping well since.  The GI doctor suggested trying diastat (Valium) to help him relax and sleep.  It's also used as a seizure recovery drug.  We have some at home but have never had to use it.  I'm trying to prevent him from escalating into full pain mode, so once he started moving around and seeming uncomfortable we gave him a dose.  He can still have Morphine as needed.

Due to the high fat in the Ketogenic diet, there are certain side effects that can occur. Our dietitian, Jamie, ran a lipid panel, and thankfully his cholesterol still looks good.  Kidney stones are also a somewhat common side effect.  The last urine test they ran was high for whatever it was they were testing (I just can't keep everything straight at this point) so Jamie is suggesting an ultrasound of the kidneys to be sure that he doesn't have stones.

Please continue to keep him in your prayers.  It's rough going right now, but this surgery has the potential to make his life better in several areas.  Let's pray that it does!

Sunday, September 15, 2013

Making Changes

If it don't work, fix it!  We have reevaluated everything from meds to formula and have discussed at length WHY he vomits, WHY there's blood, WHY he's in so much pain, and what we can do to fix it.  We've made many changes.  I'm very optimistic that we are on the right track!

First of all, we've changed his formula from the Ketogenic powder formula, Ketocal, and switched to a soy based formula.  This formula is carb free and dairy free, and we keep him on his diet ratio by adding apple juice for carbs, and an mct oil emulsion for fat.  This should be gentler on his stomach, and if dairy was a problem for him, this eradicates that issue.  He started on continuous feeds of the new formula, mixed at half strength with water, yesterday.  He did throw up this morning, but he was coughing, and also off his motility med, and I think that combination was the culprit.  There was no blood in it!  The GI docs are thinking that the blood could be due to G-tube trauma, meaning that the force of vomiting causes irritation to the g-tube site and makes it bleed.  I think that makes sense.

We are wondering if the pain Levi is in so much is "perceived pain".  This does not mean that it's not real pain, but that possibly the g-tube surgery caused his threshold for pain to be lower, and that normal bodily functions (passing gas, etc) that is not painful for most of us, is very painful to him.  That would explain why Neurontin has worked so well for him, to the surprise of all his doctors.  We discussed switching to Lyrica at some point in the future if needed.  Friday night the neurologist increased all three daily doses of Neurontin, and he has not needed morphine, or any type of pain med, since!! 

I was wrong about the pulmonologist wanting to do a bronchoscope.  He wanted the ENT to scope his throat, which is what they did on Friday, and found that his tonsils and adenoids are huge.  Tuesday they will be removed.  They said it may not make much difference, or it could make a huge difference.  The sleep study showed that he had 15 sleep apnea episodes in one hour, causing him to change his sleep pattern that many times.  This happens to most people only once or twice an hour, if at all.  So at the very least he should be able to sleep better, improving his energy and mood through the day.  Best case scenario, it will cure his breathing issues.  It's actually possible that the size of the tonsils cause his gag reflex to be more sensitive, so it could help with the frequency of vomiting.  Better swallowing is another possible benefit.  Wouldn't it be wonderful if he could start having some small snacks by mouth!

So we are making a lot of changes and waiting to see what unfolds.  I have high hopes that these changes will address and fix the majority, if not all, of the problems he's been facing these last 13 months.  Please join us in praying for him!

He's been in a terrific mood today, bestowing us with tons of toothy grins.  Life would be so much more wonderful if that would become the norm for him!


Thursday, September 12, 2013

Hospital Update

We definitely felt the power of prayer last night!!  Once Levi finally fell asleep last night, he had a good night.  He didn't even need morphine until he woke up screaming around 5.  The rest of the day was spent sleeping, fussing, with some screaming.  On the bright side, the nausea went away last night and hasn't returned.

The pulmonologist assured me that the bleeding is not coming from the lungs.  She agreed that he should have a bronchoscope, but that the ENT doc should do it, since they can actually fix anything that needs it while they are in there. SO the ENT team came in and decided that since the issue seems to be in the upper airway, they could scope him at the bedside.  His tonsils and adenoids are huge, and although I haven't heard officially from the attending physician, it sounds like they will need to come out.  Great, at least that's one issue that will hopefully be fixed!

I've been stressing the need to find out why Levi is throwing up blood.  Where is it coming from?  We need to think outside the box.  What tests should be performed that haven't already been done?  What other specialists should be consulted?  So far we don't have any answers.  I should know more in the morning after the teams round.  Right now Levi is sleeping well.  Hopefully he will have another good night!

Wednesday, September 11, 2013

The Vomiting Returns

For the last few weeks since raising the dose of Reglan (a med to promote intestinal motility) Levi has had only a couple very small vomiting episodes.  He's still only been receiving half of his daily calories, we just can't get that much volume into him.  We gave up continuous overnight feeds because he kept throwing up in the early morning hours, and switched to plain water to keep him hydrated.  He tolerated that very well. 

He's been getting three bolus feeds throughout the day at 180-190 ml. Yesterday I increased to 200 ml per feed.  About an hour after the first two feeds, Levi sneezed, which caused him to throw up.  Later in the evening it escalated until he couldn't keep anything down, even water or a dose of Zofran (nausea med).  Mom stayed with him overnight so I could get some sleep.  He kept jumping in pain and gagging/vomiting all night.  He has had "coffee grounds" vomit before, but this morning it was all brown with clusters of "coffee grounds", definitely worse than before, so we took him to the ER.  All the normal tests were run, and he was admitted.  As usual, everything came back normal.

All day he has continued jerking in pain and being extremely nauseas.  He threw up in the ER, also dark brown, but mixed with fresh blood.  So far no one knows where the blood is coming from.   The doctors are theorizing that it could be coming from the lungs and will speak with the pulmonologist about performing a bronchoscope to check the lungs and throat.  Pulmicort really didn't help his breathing issues much, and our doctor told us this would be the next step.

We had a care conference today with the dietitian, neurologist, and gastroenterologist.  We will change his ketogenic formula and see if he tolerates that better.  We discussed adding a fourth bolus feed, which didn't go well last time I tried, and may need to be given late at night.  I spoke again about how all the GI issues seem to directly correlate to the G-tube surgery last year.  Our neurologist said that sometimes surgery can lower the threshold for pain, and it's possible that Levi perceives pain where most of us would not.  The GI doctor agreed that many of his patients with chronic GI issues complain of pain that doesn't necessarily stem from a disease.  If this is the case that may explain to them why Neurontin has been so helpful when they didn't think it would be.  Maybe in the future we will try Lyrica.  This scenario seems to fit, and made a lot of sense to me.  It was great to get together in the same room and brainstorm!

Now it is evening, right about Levi's normal bedtime, and I've just put him in a feeder seat like the one he has at home.  Even after Reglan and Zofran, his stomach is still extremely upset.  He's so exhausted he can hardly keep his eyes open, but the minute he falls asleep he's waking up sick.  He's only had snatches of sleep for over 24 hours now.  We're really concerned!  It's the same type of issue we've been dealing with for the last year, and yet it's different at the same time, and definitely worse. Please keep Levi in your thoughts and prayers, and share with your friends.  This little guy needs another healing miracle!  He's fought through so many obstacles, it's time for him to put this behind him and see all the joy that life can offer.  I can think of so many things that used to seem important: walking, talking, running, crawling, eating by mouth, etc.  I see now that none of that really matters.  If he could just be done with these medical problems, if he could just feel good and be happy, that's all that really matters. 

Here's a video from last weekend, swinging in his new swing.

Tuesday, August 27, 2013

A Little Better

Since my last post, things with Levi have been going a little better.  The first week on Reglan (GI motility med) didn't show any positive results, so last week we increased the dose from 1 ml to 1.5 ml four times a day.  He has only had a couple episodes of vomiting, which is much reduced from the daily vomiting he was going through before.  Overnight we've been giving him plain water, instead of formula, in the hopes of keeping him hydrated and giving his stomach a break.  It has worked very well.  Acidosis is a potential side effect of the ketogenic diet, so we started him on a supplement of sodium bicarbonate (baking soda) because his CO2 levels were a bit low.  Two days after we started, he had a two day stretch of no crying, not even fussing!  None of us could even remember when he's had a good two day stretch.  He's had a few super happy days as well, and some crabby days.  Patrick felt that his screaming spells may point more to muscle soreness from CP than GI pain, so yesterday the neurologist increased the afternoon and evening doses of Baclofen.

Today was a mostly good day.  We see the GI doctor on Thursday.  Please continue to keep Levi in your prayers.

Monday, August 19, 2013

August Daily Journal

July 29

Feeds: 6:00-180 ml; 9:00-160 mls (had to stop, he was getting uncomfortable and fussy); 2:00-180 ml; 6:00-got to 160 ml then threw up everything.  No overnight feeds, slept well.

3 episodes of screaming in pain, gave 1/2 tab oxycodone twice.

July 30

Appointment with Dr. Rosenblum.

Feeds: 8:00 180 ml; 4:30 180 ml; overnight feeds 40 ml/hr for a total of 140 ml from around 10 pm to 1 am.  Tried to vomit around 5 am.

July 31

Feeds: 9:00 180 ml; 1:30; 5:30
Pulling back of stomach contents: 1:30-15 ml; 5:30- 5 ml
Better breathing today after Pulmicort treatment.
Fussy all day, lots of gas, 1 screaming epidosde, 1 dose oxycodone.
***Decreased diet ratio from 4:1 to 3.75:1, remains at 1200 calories a day.  We aren't able to get that much into him right now, but his daily formula recipe is mixed at 1200 calories.

August 1

Overnight feeds at 40 ml/hr for a total of 200 ml.
Changed button from 1.2 to 1.5.
Tried to vomit, but could only dry heave.
Feeds: 9:30-180 ml; 1:15-pull back 30 ml, feed 180 ml; 5:00-pull back 17 ml, feed 180 ml.

August 2

Overnight feeds 45 ml/hr for a total of 267 ml.  Stopped at 3:30 am.  Coffee grounds vomit at 4:00. Sneezed and gagged at 4:20 and again at 4:45.
Feeds: 9:00 180 ml.  Threw up entire feed as soon as it was done. Gave Zofran.  1:00-pull back 0 ml, fed 180 ml; 5:00- pull back 5 ml, feed 180 ml.

August 3

No overnight feed = no morning gagging or vomiting.
Feeds: 9:00-180 ml; 1:00-screaming fit, gave oxycodone; 3:00-180 ml; 6:00-screaming fit, oxycodone; 8:00- 180 ml 

August 4

Overnight feeds from 1-4am at 40 ml/hr, half strength formula.  No morning gagging or vomiting.
Feeds: 8:00-180 ml; 1:00-180 ml; 6:00-180 ml.

August 5

Overnight feeds from 10-1:20 at 45 ml/hr, half strength formula.  Planned on going for 300 ml, but breathing quickened, swallowing, and restlessness each time the pump ran, so I stopped early.  Immediately he calmed down and his breathing evened.
No morning vomiting or gagging.
7:30- meds and 2 oz water bolus.
Feeds: 9:00- tried 180 ml/hr at 190 ml dose. Hoping to increase daily feeds so can decrease overnight feeds, since he seems to have such difficulty with them now.  He became uncomfortable by halfway through feed, but did make it to 180 ml.  1:20- pull back 15 ml, 180 ml

August 6

Full strength overnight feed at 45 ml/hr. He threw up at 80 ml.
Gastric emptying scan today at SLU!
Vomit before gastric scan, after scan, and in car after chest x-ray.
Started 4:1 Tetra Pak, premixed liquid Ketocal formula.  Hoping he can tolerate that better.
Very happy today, no screaming or fussing!
Feeds: No morning feed due to scan.  2:30- Tetra Pak 4:1 at 150 ml. He took the entire feed great!  6:30-Tetra Pak 4:1 at 150 ml/hr.  Threw up halfway through feed.
Sneezed and vomited.
Gave Zofran.
Sneezed 3 more times and gagged each time, coughed up phlegm.
7:30 gave Zofran.
He tried to stop the last sneeze, I could tell he knew it would make him throw up.
Plugged in Vick's vapor to help breathing.
11:15 Zofran
1:15 Zofran
1:40 Start Pedialyte drip at 10 ml/hr, but he couldn't even keep that down, even with Zofran.
Went to the ER, admitted to Cardinal Glennon.

August 10

Gastric emptying scan showed that Levi's stomach emptied only half the contents it should have in the time allowed, so it is significantly delayed, which would account for all the vomiting and gagging.  The GI doctors and neurologist all agree that we will begin a motility med (Reglan).  If that doesn't work, we will tweak the diet and bring him from a 4:1 ratio to 3.5:1, then to 3:1 and see if the lower fat content helps with emptying.  If that doesn't work we will look at surgical options, either moving from the G tube (what he has now, which empties into his stomach) to a GJ tube (which empties directly into the intestines), or a surgery to enlarge the stomach opening.  I've also been concerned about acidosis, a side effect of the diet, that can cause shallow, rapid breathing and other issues.  His CO2 numbers are slightly low, and we will be starting him on bicarb soon.
Overnight feeds at 30 ml/hr. Stopped at 1:00, at 138 ml, for fussiness and swallowing.
9:00 and 1:00-screaming about 20-30 minutes after giving Reglan.
Feeds at 150 ml at 9, 1, and 5:00.
Afternoon screaming, gave oxycodone.
Sneezed at end of 5:00 feed and did NOT throw up!!!

August 11

Overnight feed at 35 ml/hr, 196 ml total.  He woke up at 4:00, turned off feed.
7:30-Screaming, oxycodone
8:30-Still screaming
9:00-Changed button from 1.5 back to 1.2, it was too big.  Changed colostomy bag, gave bath and daily meds.  Still fussy, hoping Neurontin will help.
9:20-Nap and start 150 ml feed.
10:50-Threw up entire feed.
Went to State Fair, did great.
2:00- 137 ml feed

August 12

Overnight feeds at 40 ml/hr from 9-2. No gagging or vomiting.  Was awake at 2 am with some pains.
8:30- Meds
9:00-150 ml feed
12:00-Screaming and shaking in pain
1:30-180 ml feed
4:30-Screaming, oxycodone
6:00-tried 180 ml feed, but turned off at 147 due to fussy, gaggy

August 13

Started overnight feeds at 10:30 at 40 ml/hr.  12:30 he woke up fussy, couldn't sleep. 1:30 turned off feed and he calmed down.  Restarted feed, and fussiness increased to screaming.  Turned off feed, he fell asleep.
8:00-1 oz water bolus; 99.6 temp
9:00-180 ml feed
1:30-180 ml feed
Nap and full of smiles!
Dr. Rosenblum called. He said it sounds like Reglan may be helping (his breath no longer smells and he's having a good day). He wants me to call next week, we may increase the Reglan dose.
6:00-180 ml feed
10:00-Start overnight feed.
NO screaming, fussing, or oxycodone today!!!

August 14

Overnight feeds at 40 ml/hr from 10-5.
5:00-threw up coffee grounds.
Screaming, gave oxycodone.  Continued to scream with sweating, running from hot sweat to cold and clammy sweat, flailing arms, jumping with pains.
8:00-Zofran, lots of seizures
No morning meds, too nauseas, difficult even to get Zofran into him.
10:30-1/2 strength Pedialyte at 10 ml/hr. Could only take 2.5 ml.
1:00-Zofran, super nauseas
2:00-Afternoon meds
3:00-Restart Pedialyte at 10 ml/hr
5:30-Increase Pedialyte to 15 ml/hr

August 15

Overnight feeds of 1/2 strength Pedialyte at 20 ml/hr for total of 78 ml.
7:20-Resume Pedialyte at 30 ml/hr to hydrate.  
Woke up with smiles, looks much better!
8:00-Meds, 99.2 temp
9:45-Screaming/shaking, gave oxycodone
12:00-90 ml feed, full strength formula
5:00-120 ml feed
Screaming off and on throughout day.

August 16

Happy Birthday, Patrick!
Overnight feed Pedialyte, total of 46 ml. Slept great!
7:30-Meds and 120 ml Pedialyte/water bolus
Light diapers since vomiting.
Smiling a lot today!
Talked to Jamie, starting bicarb (baking soda) today.  1/4 teaspoon in 30 ml water flush, 2 times a day.  Carnitine is low, restarting levocarnitine today.  So many carbs in Reglan solution that it brings his diet down to 3.4:1.
5:30-First dose bicarb
Checked ketones, still large, which is great!
Restarted carnitine.
8:00-104 ml feed

August 17

9:00-Tried 150 ml feed, but only made it to 90
10:30-42 ml feed
Happy today!
1:00-Meds and bicarb
2:30-Tried 150 ml feed, started fussing at 60 ml, turned off at 120 ml for fussing/gagging. He started screaming, I tried to vent his tube, but 60 ml of formula came up.  Gave oxycodone, he screamed for another hour.  We were about to leave for the ER, but he finally calmed down.
Went to an outdoor party, he was a bit fussy but did well otherwise.
8:30- Meds, Reglan, started 1/2 Pedialyte at 35 ml/hr
9:00-Screaming, stopped Pedialyte
9:30-Restart Pedialyte

August 18

Half strength Pedialyte overnight, total of 209 ml.  He was fussy, turned off pump and fussiness stopped.
Very light diaper.
1 1/2 oz water bolus, seemed to make him uncomfortable
8:30-120 ml feed
1:00-Meds, bicarb
1:30-120 ml feed
5:00-Reglan, bicarb
5:30-120 ml feed
9:30-Start overnight feed at half strength formula at 30 ml/hr
***Excellent day! NO fussing, screaming, gagging, etc.  Took feeds great!  Very relaxed and content.  Happy and smiling!  I'm wondering if it's due to the bicarb.  Maybe he has been in a state of acidosis.

August 19

I thought Levi took 240 ml of 1/2 strength formula overnight, but the med port had popped open and formula spilled everywhere. I don't know how much he actually received.
Happy and smiling!
6:30-2 oz water boulus
9:30-150 ml feed
1:30-150 ml feed
6:00-120 ml feed, was a bit gaggy at the end.
10:00-Start overnight feed of half strength formula at 30 ml/hr.
***Another very good day! No crying, all smiles!

August 20

I tried to start overnight feeds at 10, but he woke up fussing and didn't go back to sleep until 11. Overnight feeds of half strength formula at 30 ml/hr from only 2:30-5:30.
6:00-Woke up crying.
8:00-Meds (not Reglan). Hoping Baclofen and Neurontin will help the pain.  
8:30-Fell asleep.
9:50-Start 150 ml feed
1:30-115 ml feed.  Fussy and gaggy.
Dr. Rosenblum increased Reglan to 1.5 ml 4 times a day.
5:30-Reglan (first dose at 1.5 ml)
6:00-Screaming, meds and Benadryl
6:40-Start 150 ml feed. Stopped at 102 ml.
11:30-Woke up fussy. Started water at 30 ml/hr.
12:00-Screaming, gave Benadryl.

August 21

Overnight-Water at 30 ml/hr for total of 240 ml to hydrate. We are hoping that by giving his tummy a break overnight, he will tolerate his feeds better today.
8:30-Meds, bicarb.
TEMP- 99.3
9:00-150 ml feed.
11:00-TEMP 99.7, gave Tylenol.
12:00-TEMP 98.9
1:50-150 ml feed.
5:00-Reglan, bicarb
5:45-150 ml feed
10:00-Start water at 35 ml/hr.
**Levi sneezed twice today and did not cause gagging or vomiting.
**Very happy afternoon!

August 22

Overnight water at 35 ml/hr for total of 251 ml.
Woke up with big grins!
9:00-180 ml feed
SO happy! He had 3 therapies and did great! I don't remember when I've seen him this happy/relaxed/alert/interested in surroundings.  I wonder if the combination of Reglan, bicarb, and overnight water is the key.
1:00-Meds, bicarb
1:30-180 ml feed. **At 160 ml, he threw up everything, and sneezed with gagging afterwards.
6:00-150 ml feed
9:30-Start water at 30 ml/hr.
4:00am-Threw up a little bit of water and orange color, which is Reglan.

August 23

Overnight water total 173 ml, except for small amount he threw up.
Woke up screaming, almost threw up.
7:30-TEMP 99.6, almost threw up
8:00-Reglan, hope this helps the nausea
8:30-Tylenol and meds
9:00-150 ml feed
2:00-150 ml feed.
**Took afternoon nap and was very hard to wake up. He slept until 11 pm.  
5:30- Reglan
6:00-150 ml feed
10:30-Reglan, bicarb
11:00-Start water at 30 ml/hr.
11:00-Woke up screaming

August 24

He was up from 11-2:30.
6:00-Lots of swallowing/gaggy.
Had to turn off overnight water, only had 104 ml.
9:00-150 ml feed
1:00-150 ml feed
Super sleepy. He dozed in the morning. We went to a picnic, and he slept most of the way through it, but the heat may have had something to do with that.
Woke up screaming after nap.
I changed the colostomy bag and gave him a tub bath, and the screaming resumed.
5:30-Reglan and Baclofen. We are wondering if he's having muscle cramps.
6:00-150 ml feed
11:00-Started water at 30 ml/hr.
1:30 am-Woke up screaming.
3:30 am-Woke up screaming. Gave oxycodone.

August 25

Overnight water total 210 ml. Fussy.
7:30-TEMP 100.2. Gave Tylenol
9:00-TEMP 99.2, 150 ml feed
9:45-TEMP 99.8
1:45-150 ml feed
5:45-150 ml feed, meds
11:00-Reglan, start water at 30 ml/hr.

August 26

Slept all night!!
Overnight water total 174 ml.
9:00-180 ml feed, TEMP 99.9, gave Tylenol
10:00-TEMP 99.6
Took the whole feed, but started grinding teeth ( he does that when nauseous) around 140 ml.
10:30-TEMP 99.4
1:00-TEMP 99.1, another 180 ml feed, which he also took all of.
Constantly fussy, needing to be help, sleeping a good portion of the day, extra seizures, mostly clustering when waking up, with some here or there throughout the day.
5:30-180 ml feed
**Kept down 3 180 ml feeds!
Fussy and sleeping a lot.
Dr. Gibbons increased Baclofen dose because we think maybe some of the screaming fits are due to muscle soreness or cramps.
9:30- Reglan, bicarb
10:00-Start water at 30 ml/hr.

Friday, August 9, 2013

Coming Home!

Levi did very well last night on a continuous feed, and has kept down his afternoon feed, so he's coming home!  He started Reglan yesterday afternoon.  This should increase his intestinal motility so his stomach can empty more normally, and keep him from throwing up and being uncomfortable.  So far so good!  The next few weeks will tell whether this is our answer or not.  I'm praying it is!

Thursday, August 8, 2013

Finally, A Plan of Action!

We've consulted with GI and neurology, and all the doctors are in agreement as to the course of action.  Let me tell you, that just doesn't happen very often!  So Levi has been started on Pedialyte feeds, and tonight will begin continuous formula feeds overnight.  If he tolerates that, then we will begin to increase to bolus feeds during the day.

The gastric emptying study did show a significant delay.  His stomach emptied about half as much contents as it should have, so today he will start Reglan, a medication to increase motility and help the stomach to empty.  I'm praying this works!  But if it doesn't we have other options.  It's so nice to be working toward something that might help.  It's been a really hard year, I'd love to celebrate the anniversary of the beginning of all the GI issues with something that will take those problems away!

Inpatient Again

Levi has yet again been throwing up and screaming.  Tuesday night he threw up all night, we couldn't even get him to keep down a very small amount of Pedialyte, so off to the hospital we went.  Daddy stayed with him while I went back home for a therapy meeting, which also included transition from at home therapy to going to school.  I met Tony, from the school district, and liked him right off.  The next few months we will work together to have everything set for him to start at William Bedell ARC in December, the day after he turns 3.  We chose this option over regular preschool because it's therapy intensive, and that will be so good for Levi.

Back at the hospital, nothing has really happened.  He's on IV fluids, Nexium, and Zofran.  As usual, they will be holding his feeds so his tummy can rest.  We are waiting on results from the gastric emptying scan that was done at SLU on Monday, and hoping that will shed some light on the situation.  We discussed my plan to wean down the ketogenic diet to rule that out as a possible cause for the GI problems, IF the gastric scan is normal.  If it is not normal, I think we'll probably be discussing changing his feeding tube from a G tube (in the stomach) to a GJ tube (in the stomach and small intestine).  Hopefully we will find out today.

He had a good, restful night.  He needed it!  The poor guy was up the majority of both Monday and Tuesday nights, and he doesn't like to sleep away daylight.  He should feel better when he wakes up.  Thanks to everyone who is praying for our little guy!


Wednesday, July 31, 2013

Recent Events

For about a week after Levi's Nexium dose was doubled, the breathing issues improved drastically and the vomiting stopped.  Since we had just started Pulmicort treatments through the nebulizer, I decided to stop these so we would know if the breathing problems had been caused by extreme reflux or not.  After a week, both the breathing and vomiting issues returned.  We restarted Pulmicort two weeks ago, and so far it has had no effect.  Thankfully, his oxygen has maintained in the mid to high 90's.

We saw our GI doctor yesterday concerning the vomiting.  I haven't been able to get all of his feeds into him since he started vomiting weeks ago.  I've tried many different feeding schedules, but he just doesn't seem to be able to handle the volume he's supposed to have.  He's even throwing up near the end of his overnight feeds, which are given at a very slow rate.  So, I have just been giving him what he can take.  I think it's better for him to receive less than he's supposed to have, than for him to be throwing up every day as I try to over fill his tummy.  I've researched online and tried so hard to find a solution on my own.  I have two theories, both of which the doctor agreed were plausible.   1.) Nexium is no longer working.  2.) Delayed gastric emptying has returned, causing his stomach to retain a large portion of the feeds.  Dr. Rosenblum said Levi is on such a high dose of Nexium that it should be working great, but if his stomach isn't emptying, it may not be getting absorbed by the body.  First and foremost he'd like Levi to have a chest x-ray to rule out pneumonia, and maybe a bronchoscopy.  (He's had several chest x-rays for that reason, but the last was 3 weeks ago.)  Once he feels confident that a respiratory problem is not causing the vomiting, he will send Levi for another gastric emptying test and an upper GI with small bowel follow through.  In the meantime, I'm trying to get some stomach ph strips so I can see if his stomach is acidic, and before each feed I am to pull out stomach contents into a syringe to see what he is retaining.  If he is indeed still full, I'm to throw away what I pull out and give a fresh feed.  I'm very interested to see what I'm going to find today when I do this for the first time.

We've also restarted Neurontin.  Levi was constantly cranky with many periods of screaming.  Almost immediately after the first pill, he took a nap and woke up happy.  We've since increased to 3 doses a day.  Here are some cute pics of our little guy.

Asleep on the floor while we ate at Kobe's.

Does this look comfy??  Time for a twin bed!


Riding my trike!

SO much fun!!

Monday, July 8, 2013

Hospital Update

So for the past few weeks, Levi has been dealing with difficulty breathing, persistent low grade fever, and vomiting old blood.  He had one of the worst screaming fits I've ever seen on Friday, and we brought him into the ER again.  He had Toradol, which always takes away his pain, even after surgery, and it didn't even dim the pain, then Benadryl as well, which works well to relax him and help him sleep, and it didn't help either.  He was admitted and I fought with the GI resident so he could have morphine.  (GI docs don't like to give narcotics because it slows down the intestinal tract, but when pain is an issue, it has to be top priority!)  They wanted to give him Ativan instead, but I flat refused.  He had that once before, and it caused a long period of seizures.  The first dose of morphine also needed a Benadryl chaser, but it actually made him comfortable and he was able to sleep.  They sent him to x-ray for a full body scan to make sure he hadn't fractured a bone, and also the normal workup of obstruction series and shunt series, as well as bloodwork.  Everything came back normal.  His amylase was high, which points to pancreatitis, but they repeated the test twice and it was normal both times.

Neurosurgery and neurology were consulted to be sure that the shunt and seizures were not to blame.  Both of these teams feel confident that this is not the case.  An EEG was performed and the results were pretty much the same as the last one over a year ago. He's seemed to have a returning of some reflux symptoms, so they tested his stomach ph, and sure enough it was very acidic, so they doubled his dose of Nexium.  Severe reflux can actually cause all the symptoms he's been having, so I'm praying that this is our answer.

In the last week the only food he's had is about 24 hours of continuous half strength formula.  Some days he even had a hard time keeping down the Pedialyte.  Our dietitian has increased his calories again, and he was started on feeds at 15 ml an hour a couple hours ago.  He's thrown up twice since, but also twice this morning, so I don't think it is related to feeds.  His vomiting during this whole illness has been random, not correlating with feeding, so I do feel confident that it is not the diet or an intolerance to the formula. 

He's comfy and sleeping right now.  We may be able to go home tomorrow, depending on how he tolerates the feeds, and if he's not having pain.  Please pray with us that the new dose of Nexium is the answer we've been looking for.  I want to take him out to play in the pool, and go for walks, to the park, church, and have fun with him.  I want him to feel good again.  Life may never be "normal" for us, only in the sense that we are not like everyone else, but it can still be wonderful.  That's what I want for him.  Wonderful.

Tuesday, July 2, 2013

Mystery Symptoms

For the past couple weeks, Levi has had a return of noisy breathing that escalated into difficulty breathing, as well as vomiting old blood and persistent low grade fever up to 100.2, and other lesser symptoms.  So we saw the pediatrician, ENT, and had a couple visits to the ER, as updated in my previous post.  The Sunday before last we took Levi for an overnight sleep study.  It wasn't bad except he wasn't allowed to sleep on his stomach, his preferred position.  It took a couple hours for him to fall into a good sleep, but he slept for a continuous five hours.  It will take a few weeks to receive the results.

Monday morning on the way home from the sleep study, he vomited old brown blood, so I called the GI doctor.  He assumed that Levi had a virus and admitted us for IV Nexium to help settle his tummy and IV fluids.  During this time, he had breathing treatments, which helped for a couple days, but did not completely clear the breathing.  We stopped his feeds for a couple days, then increased them slowly until we were at our normal home rate.  On Friday we came home better, but his breathing was still noisy and a bit labored.

Saturday morning he began having difficulty again, and we wondered if maybe he was having allergies to something in the air, or in the house.  Ever on the quest for answers, I looked back at the blog and realized that the first symptoms appeared within 24-48 hours of starting Neurontin.  I looked up side effects and sure enough vomiting blood, fever, and difficulty breathing were listed, and can even be a sign of an allergic reaction to the drug.  I stopped giving him the morning dose, and am waiting to hear from the neurologist to see how long I have to continue his evening dose.  This is also a seizure med, and even though that is not what he's taking it for, it cannot just be stopped all at once, or it could cause seizures.  My plan is to take him off Neurontin and see if these symptoms clear up, and also what his overall mood is.  I want to know if he is having a reaction, but also if it has actually helped him, or if he was just getting better anyway.  This morning he vomited again with "coffee grounds" in it, which is old blood.  I'm hoping this does the trick, and all these issues go away.

Thanks so much for your continued prayers!

Sleep Study

Snuggling :)

Looking up!

Thursday, June 20, 2013

ER Update

Tuesday we went to the ENT clinic for breathing issues, but when they sprayed a decongestant/numbing solution in his nose he immediately filled with phlegm, couldn't breathe, and his oxygen saturation dropped drastically, so they put him on oxygen and took him to the ER.  A chest x-ray was normal, he received a breathing treatment, and we were told to return to the ENT clinic the next day.

Wednesday morning Levi woke up screaming.  I was shocked to find that his diaper was completely full of stool.  I didn't think this could happen with a colostomy. He threw up just after I changed him, and the vomit contained "coffee grounds", which is old blood.  He hasn't done this since the colostomy was placed two months ago.  So off we went to the ER.  The vomit tested positive for blood.  An x-ray of his belly was normal.  The surgery team said that having a bowel movement was not uncommon because they don't cleanse the colon when they perform the colostomy.  The stool was leftover from before the surgery.  The bloody vomit may have been caused by reflux, but he's on Nexium, so it's doubtful.  It may just be a virus.

In the ENT clinic, the doctor put a scope down his nose.  He said the adenoids and tonsils are slightly larger than normal, but not enough that he thought it would cause problems.  He prescribed two nasal sprays, one containing steroids, and will schedule him for a sleep study within the next week, I think to rule out sleep apnea.  Again, hopefully this was all just caused by a virus.  The nasal spray immediately made a difference in his breathing, and he was much more comfortable.  He's still gaggy, but I'm hoping he feels better today.  Thank you to everyone who has been praying for him!

Sunday, June 9, 2013

Bluegrass Fun

Yesterday was a wonderful, activity packed day!  In the morning Patrick, Levi and I went to yard sales with Misty, Raven, and Kylynne.  This is one of my favorite things to do.  The weather was perfect, and even though we didn't pick up any amazing deals, we had a great time!

We spent a lovely afternoon and evening with Misty and Mom at the Bluegrass Festival to benefit the Senior Services Plus Meals on Wheels program.  It was supposed to be held down at the amphitheater on the riverfront, but of course with the flooding that was impossible, so it was held in the Mall parking lot.  The weather continued to be beautiful!  After a long nap, Levi was happy too.  He enjoys being outside and loves music, so the combination was terrific for him.  Marty Raybon (from the country music group Shenendoah) spoke to Levi from stage, calling him "sugar britches".  The Harman family always puts on an amazing show, and last night was no different.  They were definitely in top form, even though their dad just had a heart attack and couldn't perform with them.  He's in the hospital awaiting, I believe, more testing and a surgery.  Please join us in praying for complete healing for Mike Harman!

Here are a few pics of the day.

Harman Family


Marty Raybon

Aunt Misty

Friday, June 7, 2013

First Dose of Neurontin (Gabapentin)

Today was Levi's first dose of Neurontin.  He is on 300 mg in the morning for five days, then 300 mg twice a day thereafter.  Almost immediately he fell asleep.  He woke up about an hour later, and I was able to give him a tub bath, change his colostomy bag, and get him dressed without the slightest fussing.  Usually he screams at the top of his lungs the entire time.  We've just finished, and he's sleeping again.  I'm glad he's so relaxed and feeling good, but I do hope this extreme sedative effect goes away once he gets used to it.  Here are a few pics I took after his bath.

Many Changes and Feeling Better

Levi is finally starting to feel better again!  The last few mornings he woke up with smiles.  He's enjoying all the activities he liked before the colostomy surgery -- bouncing, playing with his legs and arms, watching TV, sitting outside -- which was nearly two months ago now.  So it's been two months since he's been happy, and ten months since the feeding tube surgery when all the horrible GI issues (vomiting, unable to have bowel movements, etc) began.  I am so glad he doesn't have any surgeries coming up!

The motility specialist from Cincinnati recommended trying Neurontin, and after our GI and neurologist conferred, they decided to prescribe it.  He should be starting it today or tomorrow.  I'm looking forward to it.  Even though he's feeling better, he still has episodes of pain, and we are hoping that since the motility issues are neurological, this med will help him to feel better.  There's just no real way to tell if he is feeling pain from this or not, but I believe he is.

He is also having more seizures.  They are still only lasting 1-3 seconds, and since he's cutting so many teeth I wasn't too concerned, considering pain of any kind can lower the threshold for seizures.  I was reading on the ketogenic website forum, and learned that teething can actually lower the ketones.  He has always maintained large ketones so I rarely check, but sure enough he has had low to moderate ketones.  I spoke with the dietitian and we decided to raise his ratio to 4:1, and also raise his calories.  He hasn't vomited in two months, but still was not putting on much weight.  He is at 0 percentile, but on the bright side his BMI is 9, and it was in the negative before.  He's been tolerating the new recipe very well, and we wonder if the extra nutrition is part of the reason for his happiness.  Already we are noticing that his cheeks, arms, and legs are getting pudgier.  He's so much more solid now, too.  Yesterday he was holding his head and trunk remarkably well!

The last time I changed his colostomy bag I found that the stoma had shrunk to about half the size it was when the bag was placed.  The exposed skin had an angry rash and had completely broken down over a large portion.  It looked so painful I wanted to cry for him!  The fix for this a product called stoma powder, which is sprinkled over the raw area, then patted with a wet spongy stoma care wipe that creates a seal over the powder.  I caked on three layers before placing a new bag, and he felt better almost immediately.  I'll be changing it again tonight and hope to see that it's completely healed.

Levi's sweet happy smiles!

Tuesday, May 28, 2013

Results from Cincinnati

I wish I could say that we received clear answers and a solution from Dr. Kaul and the motility testing in Cincinnati, but we didn't.  The report showed subtle neuropathic changes in the upper GI.  Subtle.  This is both reassuring and confusing.  If he has only subtle motility issues, then why hasn't he been able to have bowel movements?  If the problem is in the upper GI, why does the colostomy work so well?  If his lower GI works normally, then why did it take him eight hours to void an enema?  It's confusing.

Dr. Kaul's suggestion was to try a medication called Neurontin, a neurological medication.  I don't know if I would be able to tell if it helped with motility, considering he has the colostomy, but if he's having any pain from the intestines, then Neurontin may be able to help.  He's been so crabby since the surgery, it would be nice to have something alleviate that for him.  Dr. Rosenblum, our regular GI doctor, is consulting with our neurologist before before making a final decision. 

Dr. Rosenblum suggested keeping the colostomy for about a year before trying to reconnect.  He's hoping that will give Levi time to mature neurologically and cure the motility issue.  We also have the option of taking out a portion of the colon when we reconnect.  I guess we will just have to wait and see what happens. 

It's clear to me now (or it should be!) that I can't figure this out on my own, and that we have pursued all the testing that's out there for this type of issue.  Maybe now I can do what I should have done from the beginning -- trust God. 

Happy picture taken in March :)  Looking forward to seeing those toothy grins again!


Friday, May 24, 2013

Blessings Within the Trials

It's been five weeks since the colostomy surgery, and Levi is just starting to smile again.  The last several weeks have been a nightmare of screaming, ER visits, trying to figure out what is hurting him, and what will ease the pain.  He has a prescription of Oxycodone that I use sparingly, but when Tylenol and Advil don't work, I have no choice.  Over the last few days, he has been feeling better.  When he screams now I just go straight to a half dose of Oxycodone, which takes away the pain quickly and usually lasts the whole day.  He has graced us with a few precious smiles, he is beginning to enjoy being bounced and played with again, and looking at and holding his toys.

I have received preliminary results from Cincinnati, which showed that a portion of his colon works normally, while another portion is weak, and yet another is inconsistent and "misfires".  They say it has to do with the brain/gut connection.  All the results have been sent to our GI, Dr. Rosenblum, and we meet with him on Tuesday to discuss options.

Even through the darkest times lately, we have seen some great blessings.  Levi has not vomited since the colostomy was placed, and he is actually gaining weight now.  He has never cared for pacifiers, last summer he quit taking the bottle and lost the sucking reflex altogether.  A couple weeks ago he began sucking on my arm, which was such a surprise it took me several days to even think of trying a pacifier.  He took it!  He couldn't keep it in his mouth on his own at first, but now he can use the larger ones on his own for a very short period of time.  Even better, he's sucking on his hand now, something that he has never done before.  The big deal about this is that for the first time he's showing hand to mouth coordination!  It always astonishes me when, in the toughest of hardships, a bright light shines through the darkness.  But isn't that exactly what Jesus is?  So why would I be surprised?  I guess sometimes it's easy to get so wrapped up in the trouble and despair that I forget who is ultimately in charge.  I feel like it's those times the Lord shows me that he has everything under control.  There will always be a light shining in the darkness, and it grows larger and larger until the darkness is completely eradicated.  Jesus, pure and simple.  As my little nephew once said, "Thank God for Jesus!"