Eat Happy!

Eat Happy!

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Wednesday, March 13, 2013

Children's Hospital of Richmond: Day Feeding Program WEEK SIX

This was another exciting week for Ian. He did weigh in three ounces less than the previous week, but he was still above his ideal weight for his gaining percentage.

SICKY-POO?

The beginning of the week was a little rocky. There has been an 18 month old at the house for months now. She has been there for numerous surgeries. She has also been sick a lot. She continuously plays in all the tupperware, pots, and pans. We think Ian might have caught a cold from her. We suspected illness because his retching started for what seemed like no reason. Often times, this indicates and cold coming down the pike. Funny thing was, each of his retching episodes *could* have been attributed to other things, historical reasons such as a bug meal, watching others eat, oral hypersensitivity, and so on.

On Monday and Tuesday, he seemed to be a little more icky. The retching remained the same. Toward the end of the afternoon on Tuesday, he vomited a small amount. Unsure of whether or not this was a “mucous retch” or a vomit, we decided to stress-dose him with hydrocortisone for 24 hours. I’m not sure if it was a quick ickiness, one he kicked before it set in, or the hydrocortisone dosing, but by Wednesday morning, he was fine again. This seemed to be the second time the stress-dosing worked for him. It used to be colds and viruses lasted two weeks or more. The last two seem to have disappeared within five days or so. By Wednesday, the retching had subsided again.

TUBE MEALS

Ian’s tube meals have remained the same. Nothing was changed this week. He has’t had any daytime tube meals on three weeks now! The overnight meal is still 400mLs, which is just shy of 40% of his daily calorie needs. The other 60% are coming from purees and oral chewing foods and drinks. The overnight meals have been running smoothly. We have been using the AMT clamp to keep the tubing attached to the extension.

AMT CLAMP

I also started using sponge medical tape to wrap the medicine port closed. We have used medicine port covers in the past, but I find the velcro never stays closed. A triple wrap of the tape stays on all night. We do give Ian medicine once overnight... but sponge tape comes on and off pretty easily. I can even use one piece for a few nights.

Ian continues to receive about six ounces of free water throughout the day to help with fluid levels. Since he is no longer on a fluid diet, his stools have become much firmer. It’s always about the poop with these feeding kids! Ian has responded well to the extra water and it seems to be helping.

MEDS

Speaking of medications, Ian continues to stay on the Benadryl, but is keeping to three daily doses instead of four. His two PM dose was eliminated and his bedtime dose shifted to dinnertime. The idea is that he is slowly transitioning to Periactin (another H1 antihistamine). We are hoping the Periactin will help control the mucous and retching better for the morning episodes. Ian wasn’t responding as well to the Benadryl as he once was.

H1 Receptor Antihistamines 

Diphenhydramine / Benadryl (Ethanolamines) 

and Cyproheptadine / Periactin (Tricyclics) 




****Cyproheptadine / Periactin helps retching**** 





FEEDING ROUTINES

Tom’s dad was here for the week to work on feeding Ian. He watches Ian one day a week. He had a chance to practice in the room with the therapists and even fed Ian a dinner meal one evening all by himself. Tom was here Monday and Tuesday when we thought Ian was catching a virus. He had a chance to watch more and will be here next week for his crash course in feeding Ian.

Ian also tried some new foods. He is practicing chewing toast, with and without butter. He even asked for some donut over the weekend. He ate half of a chocolate mini cake frosted donut twice over the weekend. His new favorite chewing food is Cheetos! Cheetos, cheese curls, Puffcorn, he loves them all. Ian also really enjoys yogurt. We put it in a blender with coconut milk to boost for calories. After it is mixed it is very smooth. He likes the strawberry kind the best.

Enjoying some Cheetos

We are still working on the entrees. The breakfast and dinner foods are thicker and starchier than fruits and veggies. He does a lot more gagging on them. The clinic uses fruits and veggies to ease into textures. The entrees start with 50-75% fruit or veggie and are gradually increased with more entree. Fruits and veggies almost always do well. Green beans, carrots, peas, etc. He seems to really like the carrots.

Trying hard not to retch

Practicing some chewing


Ian ended the week consuming about 27 ounces of purees and drink a day!!

TOOTHBRUSHING

Ian is doing much better with his toothbrushing. The therapists have been helping him with the skill. Also, with all the oral desensitizing, and Ian learning it is safe, his oral response is so much better now. Hardly any gagging or retching on toothbrushing at all!!! AMAZING!

Successful Toothbrushing


MORE FUN!!

Ian began counting to TEN by himself this week.  Very cute!!

Counting to TEN

Ian had a lot of fun outside this past week. He keeps saying “more outside” over and over again. He didn’t get a chance to play much the middle of the week because the snow came through. Richmond was calling for snow, but never gets snow.... so everyone panicked! But then, they called it off, and everyone still panicked! Turns out, on Wednesday, snow did come. Richmond-ers called it being *dumped on.* Truly, it was about four inches of snow which melted halfway by the end of the day. When you don’t typically get snow, and no one is used to it, or used to driving in it, panic sets in.

The clinic did remain open all day. One family went home early, the other didn’t make it in, and the two Ronald McDOnald House families were there all day. We are less than three miles away from the clinic and it is easy to bunker down, should there be a weather emergency....... four inches certainly was not, to us. There was a beautiful view out the clinic window that morning.

View from the clinic window during the snowy day

As the week moved into the weekend, Ian played at a nearby elementary school quite a bit. They have a wonderful playground! We went a couple times a day. He enjoyed jumping, sliding, and playing with large musical instruments.



Peek-A-Boo

Jumping

 

Climbing

Weeeeeeeeeeeeeee......

Making music with daddy
Running


The elementary school garden at the playground

Ian made a windsock in recreational therapy this week. Personally, I thought it looked like a jellyfish.... but it does blow in the wind.... so windsock it is!! He painted it, purple of course, and glued streamers of the colors he chose. He even brought a little suction cup so we could put it on the window back home. Right now, it is hanging with all his cards in the room. Thank goodness for easy peel, non surface damaging tape!!

Recreational Therapy Creation

The RMcD House also did a video taping of the house kids dancing to their favorite music in Ronald’s Red Shoes. The foundation is having a fundraiser in the fall called Red Shoe Rendezvous. The video has the kids playing and dancing in the huge red shoes. Ian was not amused, but did play with the other kids during the taping. He even had some tears when we put him in the shoes. The video is cute and should be on the House page later on in the year.

Ian has decided Ronald's shoes just aren't right for him :)


WHEN WE RETURN HOME

Once Ian leaves the day-patient program, he will begin out-patient therapy. Tom and I have decided to keep Ian here ins Richmond for therapy. He will most likely be coming once a week, maybe twice a month. We are waiting to hear about a day and time, but are going to try and do everything we can to make it work. He is responding very well the the protocol here and it seems to suit him nicely.

We have been talking with Ian’s preschool as well. They are the most amazing people!! They are openly willing to help make scheduling and procedure accommodations. We couldn’t even get some schools to admit him! We will be working on some protocol with them after we return. We will also have a chance to review schedules and make plans for the fall.

Most moms say they are ready to come home when the program comes to an end. Maybe I’ll feel that way in two weeks when the time comes. Right now, I want him to stay and make all the progress he can!! I do miss home, but I know this is where he needs to be right now. Hopefully, after discharge, outpatient therapy and homework will keep him moving in a positive direction. 



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 



**Ian continues to make great progress. We great some good news everyday. We also have something to always be working on. Ian seems to be enjoying the experience much more than I expected. He almost always has an open mouth for his bites and his drinks. He is certainly our *star student.* Thank you for all of the love and support. It makes us smile, everyday!

How To: Overnight Continuous

I know lots of mommies who use different ways to keep continuous feedings cold overnight.  My husband actually discovered this one.  It involves a few supplies in addition to a regular feeding bag and feeding extension:

IV pole or a Hook and place to rest the pump
Pack It Freezer Bag (original)
Dish Towels
Ice Packs
Farrell Valve Bag (with adaptations) (optional but recommended)
AMT Clamp (optional)
Medical Tape (optional)

I have used visuals to help.  I always learn better by seeing.  Food should ideally only hang for six hours without keeping cold, for health and bacteria reasons.  I hope this is helpful to families who are struggling to keep food cold overnight.

Pack Its have been a huge blessing to us and well worth the small-average price.  I can tell you that in the morning, some of the ice packs are *still* frozen and the food bag is quite cold!  Over time, sine they are hanging, the velcro does become less effective.  We used two of them for a whole year before this became a problem.

SET-UP & PREPARATION

500 mL feeding bag & Farrell Valve Bag

Farrell Valve Bag with White Clamp locked just above Y port

Cut off Farrell Bag just above white clamp.
This gives additional tubing/line for length while sleeping.
We found the tubing on the feeding bag itself and the 24" extension is still not enough line to stretch to the end of and off the bed.

Discard removed piece of Farrell Valve Bag.
The Farrell Valve Bag was simply used for additional tubing length.
There will be NO decompression available with this set-up now that the bag has been removed.

Attach the barb from the feeding tube bag into the Y port of the Farrell Valve Bag, adjacent to the white clamp tubing.
This now adds extra tube length for freedom of movement while sleeping
and for length to reach beyond the end of the bed or crib.  Remember to LEAVE THE WHITE CLAMP LOCKED!  If not, your formula will exit that end and feed the bed!

Priming the bag can be done by the pump, or by hand.
The small droplet marking of the loop that inserts into the pump is used to hand prime.

Squeeze the droplet and pull back slightly.
While squeezing, also squeeze the feeding bag, using pressure to prime the bag.

Pack It: used to keep formula/feeding bag cold for extended periods of time
(up to 12 hours..... really!)

Open Pack It for placement of accessories

Place a dishcloth or hand towel into the bottom of the Pack It.
I found one loosely crumpled give more height than neatly folded.

Place three portal ice packs one-on-top-the-other at the LEFT side of the bag.
More or less could be used depending upon desired height.
Additional towels can also add height when needed.

Place feeding bag on the LEFT side of the bag directly on top the ice packs.

Make sure the bag is facing the inside of the bag.
*This positioning will allow for tube LOOP to be on the correct side for pump loading of ZEVEZ INFINITY pumps.*


Allow the loop to rest outside of the bag, behind the feeding bag.

Place another towel or two next to the feeding bag.
Make sure to fill the space enough to prop up the feeding bag.

Fold in sides of Pack It gently, pinching overtop the feeding bag itself.

The final set-up should look very much like this.



THE HOOK-UP

Hang Pack It on the pump attachment on the back side.

Pull loop around and insert into pump track and close the door.
There will be a slight pull, but not enough to kink or crease lines.
If this happens, more towels are needed for height and support of the feeding bag.

Finished Pack It and pump set-up on IV pole

An example of Ian wearing the BENIK belt during a daytime meal.

We run Ian's extension around his LEFT side and through a BENIK support belt.
We then fed it down his RIGHT short leg, allowing it to hang just inside the leg.

We attach the Orange barb on the *extra* Farrell Valve Bag tubing to the extension.
We like using an AMT CLAMP to hold the extension and tubing together.
We have "fed the bed" too many times.  This provides more security when Ian rolls around overnight.

We can easily access the medicine port overnight with the AMT CLAMP.

In addition, we often wrap sponge tape around the medicine port of the connection.
We have also "fed the bed" by an accidentally popped-opened medicine port.

A strong, secure connection is established after wrapping the sponge tape around the medicine port.
We chose sponge tape because it is strong, but easily removed for overnight medications, and then easy to re-wrap.

Since the tubing is fed down Ian's leg, it follows along his leg and down to the end of the bed/crib.

The tubing works best when it travels straight to the end of the bed/crib.
By hanging the tubing over the edge of the bed/crib, Ian can roll around without tangling himself.
Since the tubing is parallel to him, as he rolls around, the tubing moves with him, and not *around* him.
***********************
We do not ever hook-up Ian while he is awake.
He always plays with the connections...  But this could be done before the child/adult falls asleep.

The tubing runs off the end of the bed/crib.
With the 24" extensions and the Farrell Valve Bag line added on...
there is plenty of tubing to reach and hang loosely between the end of the bed and the pump on the IV pole.


We have been using this set-up for over a year now.  It works very well for us.  Having all the extra tubing (24" extensions and Farrell valve Bag tubing) has always been a plus.  Very rarely, Ian rolls around in the tubing.  Because of his support BENIK belt, AMT CLAMP and the medicine port sponge tape, we are more often than not signaled by an alarm of a kink in the line.