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.