Eat Happy!

Eat Happy!

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Sunday, February 24, 2013

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

FOODS

Ian ventured into a whole new week of foods. He had Pop-Tarts, NutraGrain bars, sliced and cubed cheese, cream of wheat, and oatmeal. Ian is working on building skills to move beyond phasic chewing. Phasic chewing is best understood in my eyes as quick, short crunches, like a squirrel. Ian eats his “crunchy foods” like Cheetos and chips, veggie sticks, etc. with little contact between his teeth. He does not crunch fully down in order to bring his top teeth and bottom teeth together. Getting him to slow down helps work on chewing more fully.

Ian moved up the table-food ladder with Pop-Tarts and NutraGrain bars. They offer more resistance and more moisture. This makes chewing more challenging. Ian did very well. We could certainly tell it was difficult for him. You could see the concentration on his face. He seemed to have the toughest time with cheese. He had both sliced pieces and little mini cubes. The cubes were a bit easier for him.


Hooray for eating!





Ian has new crunchy foods to work on at home. They are mostly for experience and not for nutritional value at this time. He is unable to consume enough volume for the calories to be all-inclusive. He is working with veggie sticks, mini Oreos, Honey Nut Cheerios, Teddy Grahams, graham crackers, and cheddar cheese Cheetos. The first bite is always hard for him. He usually gags, but most of the time it is smoother sailing after that.

He took a while to warm-up to the cream-of-wheat. It was initially mixed with bananas. I was a little anxious since bananas were always a tough food to get Ian to eat. This proved to be no different. Ian did a lot of gagging on the cream-of-wheat with bananas. The clinic always mixes in a fruit when eating a starch. Later on, it was mixed with peaches. He had a smoother time with the peaches and has been doing well all week with cream-of-wheat. Ian also tried creamed spinach, greens beans, and peas. He seemed to do very well with all of them after getting used to the textures. He liked green beans the best of the three.

Ian progressed to a larger, rounder, broader spoon this week. It is more of a child spoon than an infant one. There is still one more size for him to work on. The volume of the bite on the spoon varies depending on the exposure of the food and the response. We have quite the collection of spoons now.

Ian is also able to take thinner purees. The thicker the puree, the easier it is for them to feel, move, and manipulate. As children progress, the purees can be thinner. Children with esophageal motor concerns and pulmonary concerns also consume thicker purees because of aspiration risk. Thankfully, we have not had that concern with Ian.

Ian is still getting two prescription formulas. He continues to receive the Compleat Pediatric overnight. The dietitian wants him to remain on this formula because it is *real* food blended into a commercialized formula. This food helps prepare his stomach for accepting more food orally. He has also started an oral prescription formula. The Nutren Jr is meant to “replace” the daytime tube calories that are not met with purees. Compleat Pediatric is meant for tube feeding only and is not for drinking. Thankfully, Nutren Jr comes in vanilla flavor and is very similar in osmolarity, protein, carb, fat content. The carbs are a little lower since he enjoys eating more carbohydrates by mouth. As he learns to eat more table foods, carbs will be the major initial foods.

AT HOME ASSIGNMENTS

I also had a puree lesson this week. This sounds easy, but it certainly is not! Thankfully, I have our Vitamix from our blenderized diet days. Pureed foods need to be perfectly smooth. Even foods like applesauce and yogurt sometime need pureeing. They gave us a little handbook that helps with recipes and techniques. We also learned about *boosting.* Ian’s food is *half-strength boosted.* They call it “half strength boosted purees" (HSBP). HSBP have 1 tsp. booster for 4 ounces of puree. If you use oil or butter, the amount is cut in half.

The book gives lots of natural and commercial examples that significantly increase calories. Examples include avocados, salad dressing, oils, coconut milk, etc. I find it hard to match the perfect booster with the food. The good news is that things such as Duocal and Benecalorie can be used to boost as well.

I have been doing meals at home in the evenings all week. I am giving Ian’s 4th and final meal of the day. He has been able to take enough with his three treatment meals and one at home meal, that he did not need a daytime bolus tube meal all week.






ADJUSTMENTS

Since Ian has been consuming a lot more purees (solids) and less tube meals, his GI system is re-regulating. Right now, we are trying to ward off the constipation. So far, we are skirting around the issue. He is certainly working harder than he was, being on a liquid diet, but is getting enough free-water in his diet to keep the pace going. It is amazing how many people ask me about poop every day!

Ian is also adjusting, or shall I say, *expressing* himself a little more “terrible-twos-ish” lately. Like I mentioned in a previous post, being away from all his things, his friends, his school, his bed, his home, being around new people, new smells, and new faces... while in the meantime, being made to work on something six hours a day that he dislikes and fears more than anything... does NOT sound like fun to me either. Thankfully, Ian’s interdisciplinary team has a psychologist on board. She met with us about some different ways to handle issues at home, feeding related, and non-feeding related. The last handful of days has been a huge improvement. He is still a bad listener at times and whines, but we are making progress.

PROGRAM PERKS

The program has wonderful perks for parents. The clinic has support groups every Wednesday and Thursday. Wednesdays is comfort hour with the Chaplain. We have an activity or project each week. We have made Valentine sachets, played dice games, and next week is baked potato bar. Once during the eight week program, a masseuse comes for parent massages! The social worker has a support group on Thursdays. All of the parents gather with her in a conference room, have lunch, and talk about the program and the kids..... and whatever else might come up in conversation.

It is a wonderful way to let go and relax, away form the children. The feeding techs at the clinic watch the kids for the hour. The women are great about getting Ian to take a nap and making sure he has a clean diaper. I am thankful they are there for our support, so that we may take a break for ourselves.

FUN TIMES

Tom’s parents and brother were here for a visit on Sunday. We all ventured to Children’s Museum of Richmond. Ian had a blast with an apple tree, ambulance, tree house, and art room. He certainly gave us all a workout chasing him around and climbing after him.

Fishing with Daddy at The Children's Museum of Richmond

We were able to have some fun at the house too. Ian loves to venture around the corner into the office at the House. He loves to schmooze on one of the directors, Allison. She loves Ian and is always asking us if she may take pictures of him for the FB page, etc. He has been appointed “Director of Fun” in the house.

Newly appointed Director of Fun

Thanks to Presidents Day, we got to enjoy an extra day with Daddy. Ian loves running around with him, wrestling, and rough housing. I love hearing the belly laughs. He also loves playing with the other kids in the house. Right now there is an 18 month old and a 12 year old with whom he has made good friends.

Playtime!!


PROGRESS

Ian gained a lot of his sickness-weight-loss back. He still has a net gain of a few ounces. Although, I feel that Monday will be a big gain! Mondays are conference days. This past Monday, Ian’s report looked fabulous! He had increased intake, initiation bites, and positive responses. His gagging, coughing, and negative vocalizations continued to go down.

Moving back to the no daytime bolus meals......... Ian’s calorie consumption was high enough all week that he only had his overnight tube meal, amounting to 600 calories. His 400+ calories from his daytime meals were successfully met with his treatment and at-home meals. Ian had between 450-650 calories by mouth each day by meals. If he continues to take these volumes, we will be able to wean down on his overnight feeding of Compleat Pediatric.

Week One (UL) Week Four (UR & Lower)
Better coloring, fuller cheeks, and happier!

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Once again...... I’m sure I am leaving things out! The only thing about doing a weekly update is I forget things. I am thankful to remember what I can and pass along not only an update, but experiences and knowledge for others. Ian is doing very well and we are so very proud of him! Thank you for ALL the letters, cards, and gifts. Ian loves opening the cards and they line the inside of our door in our room. Thank you also for the love and support that *hugs* us every day. Knowing that all of you are thinking of us gives us strength. We are forever grateful.






Monday, February 18, 2013

CHoR Feeding Reward: Jack's Big Music Show

Ian **LOVES** Jack's Big Music Show.  It is a two season Nick Jr. show from 2005-2007.  Jack, Mel, and Mary have wonderful adventures about music and even have a dance party!  The feeding clinic has been using this as one of his DVDs/rewards playing during treatment meals.

They do have a Let's Rock DVD, but are mostly included in the "Nick Jr. Favorites" collections with Dora, Backyardigans, Blue's Clues, Wonder Pets,  Bubble Guppies, UmiZoomi, and Yo Gabba Gabba.  Each DVD has different combinations of the shows.... Jack's is the BEST!


SUPER-DUPER CUTE!!!



Jack's Big Music Show Band

Jack

Mel

Mel

Mel

Mary

Mel

Quartet

Quartet Singing in the Rain

Jack's Big Music Show Characters

Snowman's Quartet

Saturday, February 16, 2013

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

RECUPERATING

Week three was a good one for Ian. After his slam with my cold, he was on the mend. We nursed his cold through the weekend with a lot of Pedialyte and slow feedings. Unfortunately, when Ian had his weekly Monday weigh-in, he had lost nine of the ten ounces he gained the week before. With a net gain of one ounce and his illness setting him back a considerable amount of calories.... it was not surprising.

As we started the new week, Ian slowly began to work the mucous out of his system. That is one of the biggest troubles when Ian is sick. Upper respiratory infections produce so much mucous, causing irritation, tickling, and gagging. Once this gagging begins, the vagus nerve gets defensive and produces even more mucous. A cycle develops day after day. All of the mucous gets in the way of his swallowing comfort. Ian ends up gagging and choking on more “bites” and “drinks.”

MEALS

Ian’s therapists had to slow down his meals. He wasn’t able to take the same volume as before the cold. Ian had been consuming about 3.5 ounces or so at each meal. In the beginning of the week, his meals were between 2.5 and 3.0 ounces each. His meals are half Nutren JR formula by mouth, and half purees (fruits and veggies). Ian’s dietitian asked that the meals be 50/50 as to keep his glucose and calories content as 1-for-1 with his Compleat formula as possible.

Nutren JR is as close to an equivalent with Compleat Pediatric as possible. The osmolarity is very similar, the fat content is a bit higher, and the carbohydrates are a bit lower. This will help keep Ian’s glucose stable. He is being transitioned from a “formula through the tube” to a “formula by drinking.” His Compleat Pediatric is an excellent formula, but is NOT meant to be taken by mouth because of its horrific taste. Is is meant solely for tube meals. As Ian’s oral formula and puree feeding increases, his tube meals decrease.

He is even going a few days here and there with only one or two ounces through the tube, instead of the regular sixteen!

Ready for some eating!

Prepping for the meal

Taking a bite


PROGRAM THEORIES


As the third week rolls by, I thought it would be appropriate to discuss some of the specific philosophies and goals of the program. Having been in the experience for a few weeks, I have a better understanding of them now.

The program is designed to address oral-motor and behavioral issues that get in the way of feeding. The clinicians try to change the behaviors not only to benefits feeding habits, but also to avoid other medical issues that may arise. This program fits Ian well because he has both a medical and behavioral issue. It began with more of a medical background, but has shifted more toward a behaviorally based problem.

Ian’s feeding-medical problems were reflux, dysphagia, and mild aspiration risk because of deep penetration of liquids into the trachea. As Ian grew.... and had his reflux surgery-placing the tube, his muscles strengthened and he was able to manage those problems, with a little medical intervention.

The real kicker came as he “learned” his responses to the medical background. Even after the medical concerns were addressed, the fear, anxiety, and trepidation remained. Some of it is definitely still there. Ian almost “prepares” himself to swallow at times. We came sometimes see him concentrating and then swallows as if to say, “ok...... ready...... go!” The huge plus is that he tries, and succeeds most of the time. The most successful experiences, the more he will demonstrate that behavior.

Ian also needs to learn that food won’t hurt him. Not only will it not hurt on the way down..... but it CAN stay down and not turn into pain and vomiting later. This has been a very difficult aversion to overcome.

We have set some goals for the eight week program. The program helps him learn that he can have a healthy, happy relationship with food. Our goals for him are to use this new relationship to increase his oral intake and decrease his amount received by tube. Also, we hope to create a willingness to try more foods. We would like Ian to feel safe desiring food, instead of us always presenting it to him as a command.

****Oral Motor****

Ian is also doing oral-motor exercises and stretches before each meal. These help stimulate his muscles. The exercises help him build strength to better handle food. The exercises, chewing, and open mouth acceptance of a spoon with food is a new concept and Ian is doing fabulously. He doesn’t always like it, but is learning that mommy and daddy are calling the shots. At this point, Ian is being presented with foods and the presentation remains until he accepts the “bite” or “drink.” Ian isn’t really given choices.

Lip stretches

Gum stimulation
  

****Being in Control**** 

As the meal moves on, we occasionally say “Ian’s turn” and hand him a “crunchy” to do himself. If he doesn’t do it within a few seconds, we take it and say “mommy’s turn.” Ian is never given a question. We don’t ever ask him “would you like a Cheerio?” This is because part of the program is teaching the children that they don’t get to decide when and what to eat....... because these children will always chose to NOT eat. Only the occasional eating occurs, which s clearly insufficient.

I have included a few videos in this BLOG post to help understand the “take your bite” and “take your drink” protocols. On Thursday, Ian had recovered enough to make considerable progress. This meant that I could begin doing meals with him. I had done once before he was sick. Thursday I was able to do one, and Friday I was able to do all three. The second and third meals I was even alone in the room while the therapist watched me on the monitor from the viewing room. At first it was a little scary knowing that I was being watched and judged on what I was doing. As the meals went on, I built some comfort and felt stronger with my feeding technique. The therapists are very helpful and give lots of positive feedback...... probably because positive feedback is essentially their job!!


compliance resistance

prolonged presentation of spoon, negative behavior of spitting

I feel like dancing instead!

Crunching!

Bites and Drinks



****Positive Reinforcement**** 

The program is very “Pavlov’s Dog.” There is a quick association between taking “bites” and “drinks” with a reward. At times, the reward is removed until the behavior os performed. At other times, if the child is accepting and engaged, the reward can remain, such as a toy on the chair tray, or a DVD playing in the background. As refusals appear, the reward is removed until the desired action is performed. The routine has to be followed very specifically. A behavior can be removed as quickly as it was formed in some cases. Reforming the behavior can then be even harder.

The program teaches specific praise for ALL efforts...... even when refusals occur. The smallest actions are praised, so as to elicit more positive behaviors. All negative behaviors are ignored, or redirected as needed. These include statements like “No spitting” when food is expelled, or the continued presentation of food to the lips with the 5-10 second repetition of “take your bite.....” until the child opens. For some kids, this can take minutes. Ian has thankfully never done this. 

Enjoying a reward


PUREES VS TABLE FOODS

Ian’s oral meals are all purees at this point. Table foods, such as his Cheerios and Fruit Loops are considered extras at this point. The purees are used for a few reasons. First, it helps deliver a concentrated volume of calories. The clinic uses the *medium* of purees to increase volumes. Secondly, purees help with texture aversions and oral-motor concerns. Ian’s oral-motor is at a slight delay. Purees give him a new texture to move around.

Also, purees provide a better “acceptance” of food bites. Think of it as what can be spit out and what cannot. Chewing cannot be *forced.* placing a Cheerio in the mouth can easily be expelled. Purees on the other hand, are *mush* in the mouth and cannot easily be completely expelled. They sit in the mouth and just kinds much around. Also, it is easier to blend in new foods. Ian started with applesauce. He then worked to 50/50 apples and pears.... then 100% pears. He did the same with peaches, and then sweet potatoes, and then carrots.

He is eating stage one and two table foods. They are divided into four levels based on density and consistency. He is essentially eating crunchy, dissolvable carbohydrates.

Ian’s feeding stages have been described in age. Essentially, he is eating at a six month level. This all makes sense since Ian was eating well until about nine months. We were spoon feeding baby foods from six months..... until the baby food hit the fan!! Ian is pretty much starting at the beginning... where he left off. He will progress in the same manner he would have then, he is just doing it two years later.

PROGRESS

It is a very exciting feeling to watch Ian eating on the treatment monitors. We are so proud of him. They teach open mouth acceptance and open mouth chewing. The chewing is to help the kids from “sucking and tongue mashing” the food. With open mouth chewing, he has to “chomp” the food with only his teeth. Fortunately, Ian is a great chewer. A lot of the kids in the program don’t know how to chew and are there to learn because they only eat purees.

As I begin to work my way into meals with Ian, I have been able to do a few at home. Ian seems to be doing very well with his homes meals. The therapists were concerned he might try to pull out behaviors with me at home that he does not with them. The mother relationship is very different from the solely feeding related relationships with the therapists.

THE TERRIBLE TWOS

On a side note, Ian has jump into the terrible twos full throttle. The tantrums and screaming, kicking, throwing behavior is definitely a challenge. It is a frequent, but not constant occurrence. Tom and I attribute a lot of it to his new surroundings, new people, new house, new expectations, and new everything else! We have also considered that he is growing, and could be experiencing some growing pains. Since he has been eating “real food,” his body is definitely changing and growing, in a good way! Either way, we have been there to comfort him when he needs it...... and ignore him when he needs it!!

I cannot imagine how difficult this is for him. The other day I was thinking about putting myself in his shoes. If someone took me hours away from all of my things and the people I know, just to make me spend six hours a day doing something that scares the crap out of me, makes me cry, and could even hurt me.... while people make me do it.... does NOT sound like something I would sign up for. It certainly doesn’t seem like a “tough love” type of experience, but undesired all the same. 

No thank you


Ian has made friends with the other “students.” One was his age and just graduated on Friday. The other child is about ten and a third is starting on Monday. Another will start the next Monday. hopefully one will be around his age for him to play with. Regardless, Ian is full of smiles most of the time and is happy to play with the toys and DVDs as feeding therapy rewards during his treatments. 


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Ian would like to extend a Happy Valentine's Day to his preschool friends, and girlfriend Emmy.  He wants them to know he had a good time and *loved* the Valentine.  He had fun during Mardis Gras and is missing them terribly!

Hi Emmy!

A special Valentine

I dig BEADS!



**Tom and I would once again like to extend our appreciation for all the support and prayers. Some days are harder than others.... and watching your child cry and refuse food while someone keeps “presenting” it to them isn’t an easy thing to do. We continue to try and see the net gain in small baby steps. He may be behind, but is making huge milestone accomplishments everyday. Thank you for keeping Ian, Tom, and me in your thoughts.

Sunday, February 10, 2013

Some Fun in Richmond 2.10.2013

Ian spent the weekend sick.  Today was a better day, not fabulous, but better.  Tom and I decided he needed some fresh air.  We took him to play at the Children's Museum of Richmond.  It is really a LARGE play area that can be done in about an hour.  Ian had fun.

He even had fun picking at Daddy's pasta at Maggiano's Little Italy at lunch.

CinderBeaner

Whistle while you work

Catching some waves

My little bookworm

So many books.... so little time

Standing guard the pirate ship

Riding the surf

All hail King Beaner

People watching

Hmmmm, daddy has food

Yummy pasta




Saturday, February 9, 2013

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

There is NOWHERE to begin with week two’s update. I guess Monday is the best place to start.........



FEEDING CLINIC

Monday is report-conference day at the clinic. The doctor, nurse practitioner, nurse, dietitian, social worker, psychologist, therapist, and parent are all present. The meeting last about 20 minutes and Ian’s progress is reviewed. Ian had a great first week, so the meeting went pretty smoothly. Especially the part where he gained 11 ounces after the first week! Amazing, since he only gained a net of eight ounces from March 2012 to December 2012.

Monday was also the day my allergies *exploded!* Apparently... Richmond is known for their allergies.... strange, but believable after my experience. Unfortunately, it turned into a nasty head cold! Tuesday and Wednesday were a total bust for mommy. I had to call in the reserves on Tuesday for the remainder of the week. A Mack truck had run over mommy! Somehow, all the coughing, nose blowing, and hacking didn’t wake up Ian, Amen! Sadly, I would share this terrible cold with everyone as the week progressed. Beginning Thursday, I started feeling human again. it wasn’t until today, Saturday, that I felt like a woman again.

Tuesday and Wednesday were great days for Ian at the clinic. He was doing excellent with his oral-motor exercises. He was still gobbling down the applesauce and had advances to a more cupped, rounded, deeper spoon... more of a toddler spoon. He was still doing 15 minute sessions. I even had the chance to be in on two of the lunchtime sessions to begin facilitating the meals. I learned the oral-motor skills for at-home practice too. They showed me how to hold and angle the spoon for easier acceptance and better mouth placement. I had no idea it was so detailed!

Ian had been doing so well at the clinic, he was taking in calories in enough quantity to decrease his tube meal volumes. His regular meals were too much after his oral-meals, and were making him too full. he was having retching and some stomach pains by over-feeding him. His meals were cut in half pretty much and they only took him 20 minutes to eat. His overnight meal stayed the same. This came out to be about the same amount of calories.

I took to the process pretty naturally. I had been watching them over the monitors for over a week and paid attention to details pretty well. I also learned that “specific” praise it very important. Using phrases such as “Good job taking your bite,” “Good eating,” “Good job with your drink...” etc. are the best positive verbal feedback. He still receives DVDs and toys, bubbles included, as rewards. They aren’t taken away every time, but are used as needed during the meals.




THE SICKNESS & THE RASH

Thursday was another story. Ian began to get sick. In the morning, he had four retching episodes, one including vomit. I knew then he was getting whatever I had. At this point, he did not have a fever. His first meal was so-so. He was feeling shy and only eating-drinking because they wanted him to. He didn’t take nearly as much volume and wanted nothing to do with his crunching. As the day went on, things got worse.

Sicky Bean

Not feelin' it

No

Ehhhh

Another progression was a rash. Ian’s rash began last Friday, around the same time as his new Atrovent nasal spray. The new medication helped Ian keep his mucous down tremendously, shortening his retching episodes in the morning and almost eliminating the amount of mucous he expelled. it was working beautifully. it was not the originally expected offender since he uses Atrovent in his DuoNeb as needed for respiratory distress... and has never had a problem with it. He has been using the new spray three times a day. It had been about a week when the rash had spread from his face to his ears and neck.

Ian's Petechiae Rash

Ian's Petechiae Rash

Ian's Petechiae Rash

Ian's Petechiae Rash

Ian's Petechiae Rash

The rash is called petechiae. It is from an internal source. The red spots are from broken capillaries near the skin’s surface. It doesn’t itch, hurt, or bother Ian at all. I’m not sure he even notices it is there. The spots look very much like Measles in appearance. The doctor and nurse practitioner both examined him and weren’t sure what to make of the rash. Since he was getting sick, they imagined it was some type of viral exanthem. I suppose it still could be... but is unlikely since it started one week before he got sick.

Another suspected cause was a new soap. However, the new soap was one used in the past and this cause was quickly eliminated because of the type of rash. it was not a contact rash, or dermatitis reaction. A third offender was brought up by myself. I inquired about food allergies. I remember the Diagnostician at CHOP mentioning that Ian has not had enough of any food to show a reaction. He had been shoveling applesauce in for 10 days now. He had also just started pears that Thursday. As of Friday morning, the rash covered his entire body.

Thursday afternoon, Ian began to go downhill. During his second meal, he actually fell asleep sitting up twice. He wasn’t feeling like himself and was totally done for the day. He took a good nap after that meal. His temperature was 99.9 after lunch. When his two o’clock meal came around, he seemed to be ok. Once the meal was about a third completed, he had a huge retching episode and vomited his food right back up. The therapists are great about turning the timer down to go off in about a minute or so. this way, the children still learn that the *timer* stops the meal, not the vomiting. This is just to make sure behavioral patterns don’t develop.

Afterwards, his fever had escalated to 101.4 or so. The hospital has a 100.0 fever rule. It seems *everywhere* is different. The children must be fever-free for 24 hours before allowed to return to the clinic. This meant Ian had to miss Friday, no matter how he felt. I was really sad since I know he needs every day he can get from his therapists. Still feeling not-so-fabulous myself, I was somewhat thankful to have the day to recuperate. My Reserves were still in town; although I think I had “broken” my mother. The days are long, busy, and ACTIVE!




GLUCOSE TROUBLES BEGIN

Tom came down Thursday night and my parents headed back home. Tom was sick when he came down Thursday night. He was sharing in the fun. We all headed to bed that night, in one room, all three of us coughing away. The next morning, Tom and I *felt* better, but Ian certainly did not. He was very lethargic and not-himself. We decided to check his blood glucose since he was sick. It was 62. Not good, but not absolutely terrifying either.

Thursday afternoon, after Ian vomited, we backed him down to 24 hours of Pedialyte. We typically do this in order to help rest his GI system and allow him some rest time to “re-boot.” He had two meals of Pedialyte Thursday afternoon and evening, and one overnight. Friday morning is when we noticed the glucose dropping. His Endocrinologist had asked us to only use Pedialyte to bring up his glucose. Since he was in the 60s and showing symptoms, we gave him two ounces of Pedialyte to try and bring it back up. It had been about three hours since he last had his overnight “Pedialyte meal.”

Ian has ketotic hypoglycemia, which means he has an abbreviated fasting time. Typically, he can go 6-8 hours without food. It is only three when he is sick. Thirty minutes after we gave him the Pedialyte, his sugar was still 62. At this point, we gave him 20mLs of 10% dextrose water. Recently, his Endocrinologist had asked us not to use this. Since we are out-of-towners, we had no idea where to go for a hospital. Ian’s feeding program is an off-campus location for outpatients only. We only used the D10 to help buy us some time.

I found the directors at the House and told them we were having a blood sugar emergency with Ian and it wasn’t responding to meds. They were able to call an ambulance for us. Another ER, another ambulance ride, another hospital... number eight to be exact. The team was awesome here and even packed us a to-go snack bag for the hospital. Of course, Ian was scared inside the ambulance. I stayed with him and Tom followed behind.




HOSPITAL #8 MCV VCU

The ER was able to run some tests for blood cells counts and clotting since the rash was there as well. They were not sure if it was connected to his illness. Everything came back normal and some cultures were sent to see if there is any infection in his blood stream. After some IV fluids, Ian’s glucose was stable and we were able to go home. 


Daddy snuggles

Marcel wearing my t-shirt for me

Oooooo, Pandas!

Sniffles



FOOD ALLERGY?

The day before, when the clinic evaluated the rash, they gave us a lab order for food allergy testing. This type of rash would be a type three food allergy. This has to do with a reaction in the bloodstream. We went to have the testing done when we left the hospital. We watched the time carefully. It had been just shy of three hours since Ian’s last “meal” when we got home.

We checked his blood glucose right as we started his food. It was 47! Unacceptable! We gave him another dose of Pedialyte and a small dose of his food. We had started giving him half-and-half food and Pedilayte. After thirty minutes, it had risen to 65. Another “not-great” number, but certainly better than 47. As he ate his tube meal, it continued to rise and was at 102 after another thirty minutes. later in the evening, it would drop again, to 51. It as becoming very evident that Ian’s “three hour window” was only one hour with this illness. We made sure to pick up on Pedilayte administration between his meals.

We had been trying to keep his fever down with Motrin. While not typically considered a fever, it had been running in the are of 100-101. We wanted it down below 100 as soon as we could so he could return to clinic on Monday. The Motrin really wasn’t enough. We started alternating it with Tylenol and using some cool compresses. The fever came down to the 99s. His fever did go back to the 100s overnight, but his sugar was stable. We gave him his regular meal overnight, but with half strength food and Pedialyte.




CORTISOL STRESS-DOSING

Early Friday morning, long before the ER trip, we started giving Ian his Cortisol stress-dosing. Since he is mildly adrenally-insufficient, we give him extra steroids when he is sick to help him fight off the illness. Thankfully, we only needed to give him the oral dose. If he is ever unresponsive/unconscious, we are to give him an injectable dose. He receives the oral dose every eight hours. We begin giving it to him when he throws up or has a fever over 101.





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Friday night we all went to bed exhausted. Although it had been a rough day, we made a lot of progress and kept Ian safe. It felt like a productive day because we successfully did what we needed to do. Ian was all about Daddy yesterday. He really misses his Daddy during the week. Today we all woke up feeling a bit better. Ian is totally exhausted from the last couple days and has been taking an excellent nap with his Daddy upstairs. Tom and I have both been up multiple times a night with Motrin, Tylenol, temperature checks, glucose checks, and food checks... anything to keep him out of the hospital.

I am REALLY hoping that Monday can be a great day for Ian. I want him to be able to join his friends at the program. While I don’t think he will lose any ground, I don’t want him to miss valuble time either. I also know that without recovering, it wouldn’t be valuable time at all. It would even be a set-back to push him and drive him into retching, or anything that would give a negative association with food. We are anxious to see what the food allergy testing shows. Hopefully, all his testing, even the blood cultures, will return normal. We did remove his Atrovent nasal spray. We will watch over the next week and see how the rash responds. Sadly, this means we are using Flonase right now, an artificial steroid..... which we are trying NOT to use with Ian as much as possible.

I’m sure something is being left out, but my brain is totally fried. I hope this clues everyone into to our little world this past week and as always, thank you for all the thoughts, prayers, and support.

..... oh, and all the goodies and cards! Ian smiles when he sees something has arrived for him. You all are too generous!

Being silly

Filling up my sticker board after my "super-juice" growth hormones