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!

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.

http://www.youtube.com/watch?v=mXVbpBe1LKk

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.

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

1:00-Meds

1:30-180 ml feed

4:30-Screaming, oxycodone

5:30-Reglan

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

8:30-Meds

9:00-180 ml feed

1:00-Meds

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.

5:30-Meds

6:00-180 ml feed

9:00-Reglan

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

7:00-Meds

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

12:30-Meds

1:45-Screaming/shaking

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!

7:00-Reglan

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

6:30-Bicarb

8:30-Meds

9:00-Tried 150 ml feed, but only made it to 90

10:30-42 ml feed

Happy today!

1:00-Meds and bicarb

2:00-Reglan

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.

Happy!

1 1/2 oz water bolus, seemed to make him uncomfortable

8:00-Meds

8:30-120 ml feed

1:00-Meds, bicarb

1:30-120 ml feed

5:00-Reglan, bicarb

5:30-120 ml feed

9:00-Reglan

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

7:30-Bicarb

8:45-Meds

9:30-150 ml feed

1:00-Meds

1:30-150 ml feed

5:30-Reglan

6:00-120 ml feed, was a bit gaggy at the end.

7:00-Meds

9:30-Reglan

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.

6:30-Screaming

7:30-Oxycodone

8:00-Meds (not Reglan). Hoping Baclofen and Neurontin will help the pain.  

8:30-Fell asleep.

9:00-Reglan

9:50-Start 150 ml feed

1:00-Meds

1:30-115 ml feed.  Fussy and gaggy.

Dr. Rosenblum increased Reglan to 1.5 ml 4 times a day.

4:30-bicarb

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

1:00-Meds

1:50-150 ml feed.

5:00-Reglan, bicarb

5:45-150 ml feed

6:00-Meds

9:30-Reglan

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!

8:30-Meds

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.

5:30-Reglan

6:00-150 ml feed

9:00-Reglan

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

1:30-Meds

2:00-150 ml feed.

**Took afternoon nap and was very hard to wake up. He slept until 11 pm.  

4:30-Bicarb

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

11:45-Oxycodone

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.

7:30-Bicarb

8:30-Meds

9:00-150 ml feed

12:30-Meds

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

6:45-Benadryl

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

1:15-Meds

1:45-150 ml feed

5:15-Reglan

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.

7:30-Bicarb

8:30-Meds

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

12:30-Meds

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.

5:00-Reglan

5:30-180 ml feed

6:30-Meds

**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.

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!

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!

 

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!

Chillaxin'

Riding my trike!

SO much fun!!

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.

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!