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!

ICU

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!

 

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!

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.

http://www.youtube.com/watch?v=sXLd10SdZCc

 

 

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!

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!

 

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.