Eat Happy!

Eat Happy!

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Friday, March 22, 2013

Children's Hospital of Richmond: Day Feeding Program WEEK EIGHT... The FINAL WEEK

This was our final week of the program, WEEK 8! Phew, what a long, but short eight weeks it was. Times like these seem to go so quickly at times, and other moments drag. We are certainly ready to get home and return to “normal” life....... but with Ian eating!

Ian finished the program at 26 pounds 13 ounces and 33.4 inches. That’s up about two pounds and about 1.5 inches since admission. From what we have gathered at the clinic, this is an impressive gain! It seems as though Ian’s experience has been overall impressive to the clinic. They expected progress, but I get the impression he more than exceeded those expectations. He looks and appears so much healthier and happier!



We finished the program as one of five patients. The clinic works extremely hard to keep five kids progressing strongly. We started with four, but a new therapist opened the opportunity for more admissions. This should help shorten their wait list as well. Prior to admission, I wondered why only four kids attended at a time. I now wonder how four kids can attend at a time.

I don’t know that I have ever seen such an interdisciplinary team working so hard for Ian. The day program includes a doctor, nurse practitioner and nurses, feeding therapists, feeding techs, psychologist, dietitian, social worker, and coordinator. It means *everything* to have so many clinicians all talking and working together for the same cause. The weekly conferences were golden! I wish I could do that with his physicians all the time.

DADDY TIME

This week was Tom’s chance to “feed-it-up” with Ian. He had a lot of chances to watch over the weeks. This was his opportunity to learn directly from the therapists and get a hands on crash course. He has done so well. He is a natural. He was able to feed him in the cafeteria during busy lunch time one day. With only having three days of feeding experience, I was impressed with how well he held everything together. Feeding a distracted child is hard enough.... a distracted troubled eater, even harder.... and a distracted, troubled eating two year old.... majorly difficult!! I knew Tom would be great!

Having lunch with daddy

lunch with daddy


ORAL INTAKE, PUREES, TEXTURES, BLENDING, TABLE FOODS, PM WEANING

When admitted, Ian was 100% G-tube dependent for nutrition. Now, he is only 20%. Ian is eating 80% of his calories by mouth in the form of purees, table foods, and formula. Ian’s approximate calorie goals are not far over 1,000. He eats over 800 calories a day by mouth! Tom and I were hoping the program would be successful enough to remove two daytime feedings. This would mean about 250 calories by mouth. Eight hundred, plus, calories certainly exceeds that expectation.

In the way of purees, Ian is a pro with fruits and veggies. He has no trouble chowing down on peaches, pears, apples, spinach, green beans, and carrots to name a few. he still struggles with entrees. Breakfast foods seem to be worse than dinner entrees. The breakfast foods in particular are starchy and thicker. The pasty texture of pureed pancakes and french toast is nothing like a blended apricot!

When Ian has these starchy entrees, gagging is much more prominent. We have been told that some of this is something he simply needs to grow out of. While he has trouble with them, a large part is sensitivity. Also, we have been told that some kids are just *gaggy kids.* That would certainly be Ian! We have been doing a food-blend working up to these entrees. In the beginning of an entree, 75% is fruit or veggie, and 25% is entree. Then 50/50% works it way into the blend. Ian will hopefully be able to move on to 75% entree soon. Right now, he is still 75/25 or 50/50 for breakfast entrees. All of the dinner and lunch entrees are 50/50 right now.

Which brings up another point....... pureeing. Over half of Ian’s nutrition comes from pureed foods. These are not commercial foods or “baby food.” Tom and I will blend all his food at home. The goal is to blend whatever we eat. A fair amount of Ian’s meals are pureed *meals.* Ian has eaten “roast turkey-mashed potato-apple meals,” “lasagna florentine-spinach,” and “chicken-rice-green beans.” Surprisingly, the meals we blend taste pretty good. I would think blending all that food *together* would be rough, but it isn’t so bad. Ian seems to like most of it.

Taking a Drink

Taking a Bite

Practicing Table Foods

Ian is trying all kinds of new table foods. His most recent adventures have been NutraGrain bar, Pop-Tart, and a pancake, waffle, or french toast, with syrup. He does have age appropriate chewing skills that are progressing well. He is starting to have some rotary chewing skills that allow him to use his teeth to grind foods. 

Ian spent some meals eating in the hospital cafeteria. The outpatient building Ian’s program was in has a smaller cafeteria with a few dozen tables. Eating at different times of the day, in a standard “restaurant-type” highchair gives Ian variety. He has had the chance to eat meals with different people around, various noises and distractions, and also different seating.

For the most part, Ian does pretty well. Some kids have a really hard time with all the distractions. Ian seem to use part of it to keep his mind on other things, helping distract from some of the undesirables of eating..... such as gagging. He has eaten there at various times of the day and faired pretty well. Learning to focus can be hard with lots of things going on. Feeding a two year old in a public place is always a challenge... even *without* feeding problems!

It felt very “normal” to feed Ian in a public place. Everyone has milestones that make things seem “normal.” Feeding Ian by mouth in a public place is definitely up there on our list. It is one step closer to leaving his feeding troubles behind us.

Ian is very close to meeting his calorie/volume goals. When he meets these goals we can wean the night time tube feeding. We also have permission to scale back even more on the night time meal as he gets closer and closer to volume goals. It seems very surreal to hear this. The dietitian told us that very soon, Ian won’t need that night time tube feeding! That is something I thought we might never hear... at least for a few more years!

GI ISSUES

Ian recently started having potty troubles when he started eating *real* food. Not being on a liquid diet changes the way your entire gastrointestinal system functions. We have been fortunate that he hasn’t suffered a huge disruption. He started taking a very small daily Miralax dose to help keep things moving. It has helped tremendously.

Ian has also shown some interest in the potty since we have been in Richmond. I do believe that sometime in the following months, he will be making some potty advances. We have come as far as him telling me when he has pooped and answering me correctly when I ask him. He even went over to the diaper bag at the clinic on day and pulled out the changing supplies, and brought them to me. *HINT* *HINT* mommy!

TUBE MEALS, DUMPING, PM WEANING

Right now, Ian’s only G tube nutrition is his 200mLs bolus meal at night. A bolus meal is a short, concise meal through the feeding tube. There is a variety of opinions on how long a bolus can be before it is considered continuous. Since Ian’s meal is only 30 minutes on the pump, it is definitely considered a bolus. Ian’s overnight meal before admission was 600mLs+ over eight hours. Cutting is back by 2/3rd is huge, as well as shortening eight hours to thirty minutes. Since Ian historically suffers from late dumping syndrome, post-prandial hypoglycemia, meal pacing is important.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * 

Giving Ian meals too quickly causes his stomach to release large amounts of foods at one time, causing a large glucose surge in the blood stream. The dumping is typically signaled by a large large in glucose readings. Then, after the large glucose load, the body releases a large amount of insulin to compensate. Insulin takes up glucose and stores it in the liver for later use. The trouble is, once the proper amount of glucose has been “taken-up,” insulin is still released. The *shut-off* valve doesn’t shut-off. As insulin is continually released, glucose continues to be removed from the blood stream. This leads to very low blood sugar, hypoglycemia. Some of these can be very dangerous. 

* * * * * * * * * * * * * * * * * * * * * * * * * * * * 

Ian has had lots of dumping troubles in the past. Real food typically helps keep the stomach from releasing food too quickly. The stomach does not respond to tube feeding formula the same as oral eating. We had concern about still giving Ian a tube meal overnight. Two hundred milliliters, about seven ounces, in thirty minutes is a big deal.

So far, things are going well! Ian has not shown any dangerous signs of dumping and we are continuing the 200mLs in 30 minutes. His endocrinologist is on board and is comfortable with Ian’s progress. This is so wonderful for Ian. As long as things stay well, once he is done eating from 10-10:30P, we can remove is tube extension and support belt. Then, he can sleep in what we would consider “normal” settings.

Not having Ian hooked up to a pump and IV pole overnight would mean a “big boy bed” in the near future. Changing eating, potties, and beds is way too much overload for little Beaner, but on the horizon at least. The thought of Ian sleeping without medical supplies is such a great thought!

As I mentioned previously, Ian is very close to meeting his calorie/volume goals. When he meets these goals we can scale back the night time tube feeding.... and even remove it entirely! If I hadn’t been so overwhelmed and shocked, I know tears would have been streaming.

MEDS

We made a final “in-program” medication change this week. When Ian was admitted, he was taking four daily doses of Benadryl to help control mucous. It also, indirectly suppresses the gagging response of the vagus nerve and vomiting reflex in the brain. Ian started his Benadryl regimen to help minimize retching from his hypersensitive vagus nerve back in December 2011.

We noticed by trial elimination in the fall that the Benadryl was *certainly* helping... but he was still having significant retching and mucous issues. Ian started taking cyproheptadine, Periactin, a few weeks ago. Periactin is another antihistamine just like Benadryl, but works slightly differently. The nurse practitioner told us that some children simply respond to different meds better than others, even within the same drug classification.

Ian has done well with the Periactin... well enough that he has weaned to two doses of Benadryl. Ideally, the goal would be to remove one or even both of the Benadryl doses, and plug in another Periactin dose. Right now he is taking two doses of each in a 24 hour period... centered around his “needs.”

Right now, Ian does not need any medications overnight. He has a medication dose when we feed him at night. But this is before we go to bed. His next medication dose isn’t until 5A, when Tom is getting up for work. We can finally sleep through the night... well, Tom can.... he has been the one getting up over the last year and a half to do the overnight meds... so I can sleep. I know he will be happy to have the uninterrupted sleep!

CLINIC RESOURCE

We agreed to be a *touchstone* for interested families. The clinic likes having families for potential admissions to speak with. Tom and I are always open to these opportunities. I think having someone who has been through a similar experience, or considering a similar experience, is sometimes the most helpful. I remember a lot of times when I wished I had someone to relate to our experience.

FUN

Ian has had lots of fun this last week. He had time to be silly and play outside. His new “WOO OUTSIDE” chant always makes us laugh. He has especially enjoyed the playground at the nearby elementary school. They have a large collection of fun equipment to climb on. They also have an outdoor musical classroom with cool instruments. Ian really enjoyed running, jumping, and climbing on the playground! We were able to capture a lot of great memories in photographs. Ian made sure to have his super-cool sunglasses when he played outside. “Bright outside” he would say!

 


"Outside!"



"Woo Outside"




"I-A-N..... R-O-H-R!"


Mommy's little organizer!!


The Ronald McDonald House here in Richmond is developing new advertising and marketing media. Professional photographers came to the house this week to help develop a new brochure. They had previously donated their services for Christmas last year. The house was part of the Holiday House Tour for 2012.





The photographers were generous enough to offer their photographs to the families. The house will choose from the photographs taken to design the new brochure. There is a chance our family will be featured in the new advertising! Very cool. I’m excited to see the photographs and to have some new pictures of the three of us.

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

Ian has made an incredible journey over the last two months. He has come from behind against a lot of odds. He certainly is not finished his journey with food. With a firm establishment in place, Ian can continue to expand his diet with tastes, textures, and volumes. He has a lot of “chewing” work to do to build endurance and strength.

Ian will attend outpatient therapy once a week to help him advance his skills. We’ll travel to Richmond on Thursdays to see his therapist. We will get to see the same primary therapist from his day patient program admission.

Tom and I are excited to see where we go from here. There is a big transition period once we get home. Ian will no longer be in a setting where he “eats.” Being back home will bring him back to a place where he “doesn’t eat.” Turning home into a place where he “eats” will take some time, just as it did at the clinic. With good skills in place, the transition should progress with few hiccups.
I find describing Ian’s journey with food is best said with a “running track” analogy. I often feel that as soon as we have run enough laps to get ahead, someone comes and picks us up.... and moves us back. It feels good to have such a large amount of the race behind us. Ian is eager to eat and actually enjoys eating. He asks for foods and actually tries eating them. Sometimes he even runs to his feeding chair with smiles and says “EAT.” Watching Ian eat is like watching a dream come true.

Our goals for the program were: 

**To increase Ian’s willingness to try foods** 

**To increase Ian’s oral food intake while decreasing tube feedings** 

**To create a healthy and happy relationship with food.** 


These were created by Tom and I at the beginning of the program. Ian has achieved all of these goals and has a lot of growing to do. The most important goal for Tom and I was #3. Ian has developed a relationship with food that is open to exploration and acceptance. Tom and I couldn’t ask for more from our amazing hero!

GRADUATION

There is a small gathering for graduations. The staff and team members all come together in the Day Program waiting/play room. The kids can wear a little gown and a cap that everyone signs with nice messages. It is nothing formal. Ian also receives a certificate for completing the program. He was adorable in his little cap and oversized gown! Graduation was immediately after his second meal, before the third meal. This is usually Ian’s nap time. After the graduation, we came home and skipped the final meal. This way, Ian didn’t lose nap time. It was a very proud moment for all of us to celebrate all the hard work and progress.


primary feeding therapist, Miss Kacie


Ian diploma and graduation cap (complete with Wonder Pets Ming-Ming sticker!)
Ian’s dietitian gave him a graduation present. She bought the book “Just one Bite.” It is a book about animals and ‘their bites.’ Ian likes watching all the animals eat. The illustrations are pretty cool and the book is quite large. It’s pretty cool that the animals take their “bites,” just like Ian!!

Ian's new book!

RONALD McDONALD HOUSE GOODBYE

Saying goodbye to our new friends and “family” at the RMcD House is difficult. After living with all of them for almost the entire eight weeks, sharing stories and heartfelt emotions becomes a natural therapy. We have met many families with many different histories. Right now, eight of the nine bedrooms are families who are here for two months or more. That means we saw the same people every day, sometimes for the full eight weeks. The children made friends, playing together during meal times and in the evenings. A lot of the kids are in programs, and have down time at the house.

The staff has become a family away from home. Their warmth and support made our experience lovely. They always had smiles for Ian, and he for them! When we come for outpatient therapy, we may spend the night occasionally. We have to stop by and visit our home away from home! Thank you to everyone!

Saying goodbye to Miss Allison, Director of Development


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As always, we are very thankful to all the family and friends who support our family. We never feel alone. The love is always nearby! While we have a long way to go, I feel like we have finally turned a corner with a big step forward............



Pinch me........... I must be dreaming!



Sunday, March 17, 2013

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

Another week has come and gone for Ian’s day patient feeding therapy program. Only one week left to go. I continue to be amazed at the progress he has made. I have never, ever been so proud. My little boy is an amazing super-hero!! I really do feel like he is beginning to enjoy eating (please stay away little goblins who hear me say that). A few times during the week, and then again today (saturday), he actually smiled, said Ooooooo, and ran to the chair when we said it was time to eat/ time for breakfast (etc.). He doesn’t fight sitting in the chair and only cries when he is fighting Tommy for control over the DVD set-up.

RMcD HOUSE

The week started off well. A little girl from World Pediatric Foundation is in the house as well. She is a bit younger than Ian. It was quite the unrequited love affair. Ian chases her all over, smiles and giggles, and loves playing with her. She however, runs away. After a while, little smiles followed. Now, they both play a little “hard-to-get.” It’s adorable! They like to sit at the bottom of the stairs together and shoot coy glances at one another.

The Director of Development was able to get a video spliced together from last week’s dance footage. The video is to promote the Red Shoe Rendezvous fundraiser in the fall. The video is great. Ian did *not* like the shoes, but was given a great line in the song about the shoes being “not right for him” while he stands in them and cries. Oddly enough, it’s pretty adorable too!



red shoe rendezvous


MEAL TRAINING

It was another full week of family learning. My sister had a two day crash course in feeding Ian. She was great! Her speed and volume were excellent. With a little guidance, her spoon placement and small technicalities were ironed out by the time she left. My mother also wrapped up her training here. She has been helping out each week for a few days at a time. She has had lots of opportunities to watch and practice. All together, the three caregivers (mom, Tom’s dad, and Amy) had a handful or two of practice meals both with instructors present, and alone at the house.

I didn’t have as much chance to practice with instructors, but had been doing it quite a bit before the last couple weeks. Tom will be here this next week to have his turn. It isn’t a horribly difficult task, but takes learning a new skill. Ian is fairly tolerant of the feeding process and like I said, is maybe even beginning to *enjoy* it!

Once we are home, we will be working on a preschool feeding schedule. The preschool has been amazing. They have done so much for us already and are eager about learning what they need to help Ian. Our family is truly grateful for their support and love. Ian will eat before school, but will also need to eat, somehow, before coming home. Chances of him falling asleep on the way home are good and pushing meals too late in the day backs up all the other meals. It is quite a routine getting all those meals scheduled.

FEEDING ROUTINE

Speaking of scheduling meals..... working them all into a day is exhausting! Ian has four meals. By the time I prep whatever he is eating, gather up the things downstairs and set-up, do his oral-motor exercises, practice chewing, feed him his meal, and clean-up.... an hour or so has passed by. With four meals in a day, that leaves a little over an hour before we need to start all over again. That pretty much schedules the whole on *FOOD.*

We have discovered that the best open windows of opportunity are between meals one and two and also between meals three and four. The window between meals two and three is nap time. We aim for meals to be around 9A, 11:30A/12P, 3:30/4P and 6/6:30P. It is a lot easier to space out meals at home than at the clinic.

The clinic needs to get three meals in by 2:30P. With Ian’s schedule, everything gets rearranged. After Ian eats at 9A in the clinic, he has a break until 11:30A. That isn’t usually a problem. However, after meal 2, Ian naps. We have to wake him for the third meal. He usually only gets to nap about an hour and a half..... making for a very unhappy Beaner for his 2 o’clock meal.

It is harder being away from home. Once we get home, we can blend foods and freeze them in batches for future use. Freezing home made foods in ice cube trays makes for one ounce portions, an easy measure. Moving supplies around will also be eliminated at home. We can leave things where we need them regularly.

Quantity of meals was a question at one point. Right now, Ian is eating four meals a day, all of equal opportunity volume. Some children eat three meals and two small snacks, of smaller volume. This was/is an option for Ian also. With it being so time consuming to prepare, carry out, and clean up his meals, I cannot imagine getting him into the chair five times a day!

PROGRESS

**Table Foods, Spoons, Volumes, Tube Weaning, Medications

Ian is working hard on his table foods. He has been doing well with buttered toast, pancake, and waffle. Also, he ate half of a NutraGrain bar this past week! Right now, the clinic does not count the table foods in his caloric content. They mentioned if he kept eating that much table food, they would need to start counting.

Ian has been trying more entrees at the clinic. They often use SmartOnes and Lean Cuisines because they do not have a full sized kitchen. He has had Lasagna Florentine, Chicken Pot Pie, Turkey and Mashed Potatoes, Chicken and Rice, Chicken and Stuffing to name a few. He has also had pancakes and waffle, and even french toast. All of these have been pureed. Ian has a harder time with the entrees because of textures. He is still only getting smooth purees, but some foods are harder to puree than others. We have learned thinning, thickening, and calorie boosting techniques to help find good consistencies for Ian. 





Ian tried new foods at home too. He had Fruit Loops, a bite of donut, Corn Pops, Puffins Cereal, and Cheetos at home this week. He did a great job on all of them!

Munching on Fruit Loops

Tasting a glazed donut...... yummy!!

Ian has been increasing his meal volume little by little... but steadily. He started out taking about three ounces or so in the beginning. His stomach has grown and has been stretching over the course of the program, by taking slightly larger volumes over the weeks. Recently, he has been able to take full size bites of most foods! It is amazing!!

Ian has had a progression of spoons since starting the program. He began with The First Years Spoon, then progressed to the Munchkin Disposable Spoons.


Munchkin Disposable Spoons

Today, he had both his largest meal by volume and his largest day by volume. He had a meal today that was 10 ounces. His overall total was over 33 ounces. That is a very large amount of food. Since his meals have been growing during the day, his overnight meal has been shrinking. Before the program, Ian’s overnight meal was 600+ mLs. Right now, it has been decreased to 400 mLs because he has been taking around 600 calories by mouth.

Now that Ian is taking more by mouth, they will most likely decrease it again this coming week..... hopefully. As they wean back on his overnight meal, not only does it remove calories that he needs to make sure he consumes orally...... but we need to make sure he can keep his glucose at safe levels. With ketotic hypoglycemia, the body has an abbreviated fasting period. As of last April 2012, Ian could safely fast for 8 hours at home, but asked us not to do more than 6. Medically, he can go for 12 in a hospital setting. Those numbers aren’t horrible, but they are much lower than they should be.

Enjoying some Fettucini Florentine with Broccoli

As Ian’s overnight meal weans back, the decision is whether or not to decrease the time as well. Ian’s baseline meal overnight was 600 mLs, over 8 hours. Now, he gets 400 mLs, over 6.5 hours. As the volume and timing go down.... we have to look at *where* to place it during the night safely. If he finishes dinner at 7P and eats breakfast at 8A, that is 13 hours of no food, except the small overnight meal. Strategic placing is important. It is also important to his mucous production and morning-waking-food tolerance.

The medications are also being rearranged. Since meals are changing times, so are the meds. Some are trying to be weaned back, some removed, and some simply rearranged.

Ian’s Children’s Benadryl dose: 5mLs three times a day 

Ian’s Prevacid Solutabs dose: 1/2 of a 15mg tablet twice a day

Ian’s (Eryped) erythromycin dose: 0.4mLs three times a day 

Ian’s Periactin (cyproheptadine) dose: 3.5mLs twice a day 


The goal is to decrease/ eliminate the amount of Benadryl, by countering it with the Periactin. Both are H1 anti-histamines, but are different structures and affect people differently. Ian had not been responding terrible well to the Benadryl. It was helping him *a lot* but he was still having mucous induced retching that was also not eliminated by singular, flonase, nasonex, or other allergy meds. It was helped wonderfully by Atrovent nasal spray, but he had a drug related reaction to it and had to stop. The erythromycin won’t be eliminated anytime soon. It is a small dose to wean, but does still help him empty his belly at times.

POTTY TIME

While I was getting ready for the day on Monday, Ian started grunting like he was pooping. When I asked him if he had to poop, he told me yes. I immediately put him on the potty. I had to hold him from falling in through the seat, but he did poop in the potty! His stool has been under close e of the dietitian for fluid requirements........ and that is all I will say about poopies!

FUN!

Ian had a blast riding all over the hospital center in the little purple car. It’s a little “Flintstone” car and his little legs move a mile a minute! Somehow, he never seems to get tired. He has friends all over the hospital!

He also had a fun visit from Nonna and Uncle Jimmy. Grandpa was golfing in Myrtle Beach and Florida....... lucky Grandpa!! He had tubbie time and read some books at bedtime. He had fun playing at the playground today too.


Cruising the halls



Reading with Nonna

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*


Like I said, Ian had another great week!!! Tom and I are more around of him everyday. He is doing amazingly well and we are having a hard time believing it is even happening. After over two years of pretty much moderate-to-poor trials, the feeding and retching seem to be on their way out. Ian’s retching episodes are only 1-2 times a week, maybe, and he seems much healthier. Real food has done him good!!!!!

Thank you again to everyone for the support.... we remember it every day. We believe it is that strength that has brought the courage to keep trying, and we will continue to do so.... Thank you from deep within our hearts.

Thursday, March 14, 2013

G Tube Hide and Seek, Venting, & Cleaning

G TUBE HIDE AND SEEK

Ian’s G tube did a special disappearing act at the end of the week. We vented his belly right before we fed him his afternoon meal. *Venting* consists of opening the G tube feeding port and inserting a syringe, or extension with a syringe, and allowing air to escape from inside. Fluid will escape at times, but can easily be pushed back into the belly. We like to call this “burping” his belly. Ian seems to always need venting. We vent him when he wakes up, before every meal, and before bedtime...... sometimes more. Ian is able to burp now, but this allows a lot more air to escape a lot easier.


FYI: I have noticed that the BD syringes will fit directly into the button port IF they are the sterile ones in the packaging. The ones saying “oral use only” on them have larger barrels on the syringes and will NOT fit into the port. 

We like to use 10 or 20mL BD syringes that fit directly into the port and do not need an extension. However, an extension and a 60mL syringe works very nicely also. 

Venting with a 10mL sterile BD syringe


Anyway....... after venting him, we fed him. Immediately after his meal, he pooped..... go figure! Tom took him right upstairs to change his diaper. He lifted his shirt to change him and noticed the button was GONE. He called me in the basement of the RMcD House in a panic. He simply said it was gone.

Upstairs, I asked him where the button was, thinking maybe he had it..... but he said he didn’t know. We knew it was there right before he ate, since we had vented him prior to eating. The stoma was not leaking and there was no bleeding, swelling, tearing, redness, or oozing. Ian didn’t even seem to notice it was gone.

We always carry at least one back-up button. I cleaned his site, pulled out the button and prepared the lubricant to insert the new button. As I turned to do so, I saw his old button lying on the floor, with the IV gauze still wrapped around it. The balloon, still inflated!!

Once I placed the new button, Ian was back to whatever it was he was doing before the whole event started. I grabbed the old button from the floor to check the balloon for leaks. I didn’t see anything when I inserted more water into the balloon. Sometimes they have a slow leak over time. Also, the buttons become very lopsided as they are in the body. The shape of the stomach changes the way the balloon is shaped.

Cleaning Ian's G Tube Button

Inflated G Tube Button Balloon
An example of another child's lopsided G Tube Button Balloon due to time inside the body

Everything was fine in the end. This is the first time Ian’s tube has coming out aside from a purposeful change. Thankfully, there were no repercussions.

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.