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!