Eat Happy!

Eat Happy!

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Friday, June 21, 2013

Post CHOP Discharge Events~ Moving on up!

CHOP GI VISIT

We were excited (if you could imagine) to visit the GI doctor. We needed to be somewhere we would get help, and it felt good to be visiting a GI. However, we’ve had some turbulence with this GI before. She was our initial contact with CHOP, before seeing Dr. Blinman’s surgical clinic. Ian almost immediately herniated and vomited through the fundoplication he had..... sending us straight from GI to general surgery, and the GERD clinic. Unfortunately, GI and the GERD clinic do not have an ideal working relationship.

Upon visiting the GI, we were promptly chastised for seeing the GERD clinic, instead of the GI department, for Ian’s GI issues. She told us that since she hadn’t seen us in 14 months, and we had too much going on for her to manage on a daily basis, that we lived too far away and we would need to work with someone near us.... and she would help out. This was a HUGE blow to the stomach. We felt as though the wind had been knocked out of us. We were speechless. I had no idea what to say. We moved along with the appointment to see how it panned out. I had never been told Ian had “too much going on” or “lived too far away” to be managed by a doctor.

NEWS FLASH: We come to you *because* we have all this going on and can’t get the help we need back home. If we could, we wouldn’t drive three hours to see you.

She recommended a medication schedule for Ian that sounded promising. She began an alternating-rotating schedule for two of his meds (Erythromycin and Periactin), introduced a new med (Bethanechol), and left his other meds the same (Prevacid, Benadryl, Alvesco Inhaler, Neurontin, and Miralax). With eight meds set in place, we were hopeful some progress would be made. It was discouraging to hear that the domperidone (Motilium) was not even an option. The medication isn’t even available/approved through the CHOP GI clinic to even prescribe. Hopeful, we continued on... nervous about the new schedule and the prospect of working with someone closer to home.



THE NEW PROTOCOLS: MEDS, BOOSTING, DUOCAL, MIRALAX

The new medication schedule seem to start helping within the first couple days. Ian was able to start slowly building up his volumes again. We were regularly giving him five meals instead of four. The more frequent smaller meals were helping. We also made quite a bit more changes to his plan.

Around the same time as the GI appointment and the new medication schedules, we started changing the *added* calories in Ian’s diet. His food was no longer half-strength boosted, but was now three-quarter boosted. This meant he moved from half-strength-boosted-purees (HSBP) to three-quarter-strength-boosted-purees (TQSBP). Boosting is a protocol which incrementally increases the calories in a certain measurement of food. You can also boost drinks, but we have not done that with Ian.

I have written out a few guidelines below to follow for calculating the HSBP and TQSBP calorie content for 1-oz puree.


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MEASUREMENTS......... 

HSBP:

1/2-tsp of “booster” per every 1-oz of puree

**When using oils and butters, this amount is cut in half...

1/2-tsp of “booster” is added to every 2-oz of puree



TQSBP:

1-tsp of “booster” per every 1-oz of puree

**When using oils and butters, this amount is cut in half...

1-tsp of “booster” is added to every 2-oz of puree

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HSBP:

1-oz standard puree = 23 calories

Half-strength boosting adds 11.5 calories

(50% of the original amount) to the original 23 calories


This makes the new total calories 34.5


..... But, adding the 1/2-tsp per 1-oz adds volume


The new total volume is the initial 1-oz, plus the new 1/2-tsp (0.08-oz) = 1.08 oz


That 1.08 oz = 34.5 calories


Math then shows 1-oz = 31.8 calories


This rounded down number of 31 is the new calories per ounce.

(adding oils and butters changes the numbers a bit, but the same concept remains.)

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TQSBP:

1-oz standard puree = 23 calories


Three-quarter strength boosting actually adds twice the calories half-strength boosting does..........


............... adding 23 calories to the original 23 calories


This makes the new total calories 46


..... But, adding the 1-tsp per 1-oz adds volume


The new total volume is the initial 1-oz, plus the new 1-tsp (0.17-oz) = 1.17 oz


That 1.17 oz = 46 calories


Math then shows 1-oz = 39.4 calories


This rounded down number of 39 is the new calories per ounce.

(adding oils and butters changes the numbers a bit, but the same concept remains.)

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** Boosters are specific food/drink/supplements that are typically moderately high in calories (ie: syrup, honey, butter, salad dressings, cheese, fruit preserves, instant formula, powdered milk, coconut milk, avocado, Benecalorie, Duocal......).

I’m sure a lot of that sounds mumbled. But, please let me know if you are interested and have questions. This is a plan set in place by Ian’s Dietitian at Children’s Hospital of Richmond (CHoR). It doesn’t seem to be common knowledge on the internet. Our Dietitian at CHOP was familiar with the protocol as well.

The Duocal leads me into our next change. We decided as a team to supplemental calories to Ian’s diet. Duocal is a prescription/behind the pharmacy counter powder. It is 25 calories per scoop. Ian currently takes 6 scoops a day, giving him 150 extra calories. We also use this to boost his food (veggies and some entrees only) before freezing. The molecule withstands heat and freezing. (PS- fruit boosts very well with fruit jams, jellies, and preserves).





The plan works out very well with Ian’s Miralax schedule. Ian receives 1/2 cap Miralax and 2 scoops of Duocal three times a day. We mix the powder with 4-6 ounces of water (depending on his free fluid needs).



FREE FLUID

We also have to keep a close watch on Ian’s free fluid intake. Ian’s recommendations are between 31-39 ounces a day. This is calculated from weight, age, activity level. We find Ian does best at 35+. This helps keep him pooping the way he needs to stay comfortable in his GI system. We calculate his fluid based on percentages. The purees are 50% free fluid, and the Nutren Jr formula he drinks is 85% free fluid. If he eats 20 oz of purees in a day, he gets 10 oz of free fluid. We make sure to add anything he drinks from a cup and also his Miralax/Duocal water. Sometimes we need to give free water boluses to make up for deficits. We also find on hotter days, Ian needs closer to 40 oz because of sweating and high activity levels outdoors.



GINGER

We also found ginger is our friend. Each of Ian’s three Miralax/Duocal doses include a small 1/4-tsp or so of ground ginger. It mixes in very well with the water. Ginger is known to help relieve nausea and stomach upset, and also aids in digestion and stomach emptying. It could be completely placebo effect, but we feel it is making a difference.





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Since we have put all these ideas into place, Ian has been doing very well. Amidst all of this, we decided to battle CHOP GI for another GI consultation. After arriving home, Tom and I decided we did not like the way the appointment was handled in May. We were appalled that someone would tell us we have too much going on and live too far away. The general consensus across the support boards led me to believe the same thing. After a serious discussion with Tom, we decided seeing the other motility doctor for a consultation would be in Ian’s best interest.

I made a phone call to CHOP about the matter. It was a Tuesday. I explained to them the recommended treatment was working and Ian was doing well; however, we did not care for the way the information was presented, nor did we appreciate the tone of the appointment. I told her we didn’t appreciate the way we were chastised for seeking care with another department that was helping him and we were interested in finding another GI motility doctor that we could have a better, more professional working relationship with. I mentioned that we weren’t thrilled with the idea of working in conjunction with someone in our area because we live too far away. I felt as though the phone conversation was professional and straight forward. They told me they would forward the information to the motility department director and be back to me very shortly.

On Monday afternoon, I followed up on my phone call and there had been no resolution. I was also told that a particular clinical coordinator was managing the case. I left her a voicemail that day. I followed up again on Thursday with no reply to any voicemails earlier in the week. I spoke to the GI department front desk on Friday morning, hoping to hear some news after seven business days from my call. I received no information, or phone calls.

The next Monday I called the GI department again, after leaving a third unreturned voicemail from the coordinator. She said she would followup with her again. I felt bad because the front desk is unable to make the second opinion appointments and simply relays the messages. The lady I needed to speak with never returned any of my three voicemails within the two week period. I called patient relations that Monday evening. I explained the appointment and call situation with her. It had been two weeks since my appointment request. I had mentioned all along that I didn’t need an urgent appointment and we would be willing to wait. Ian was doing well. We simply wanted to work with another doctor.

I received a phone call Tuesday morning from our “Dr. House” at CHOP. As a diagnostician, he is able to help us coordinate care with physicians and treatment. Everyone had already been informed of the Family Relations phone call. “Dr. House” called me Tuesday afternoon to gather details about the situation. After a lengthy phone call with him, he informed me that we would be hearing form GI soon about an appointment.

Wednesday morning, the Diagnostics department called us again...... this time with an August appointment with the motility department director. We were very happy to have the new appointment on the books..... finally. I’m sorry, but two weeks to *schedule* an appointment is unacceptable. Like I said before, we don’t need the appointment to be now. we simply just need the appointment. It is sad to me that I had to even make the Family Relations phone call. One of my biggest pet-peeves is when people don’t do what they are supposed to do, or don’t do what they say they are going to do. I have enough to do without doing someone else’s job, and I do that way too much. I shouldn’t have to follow people around to get things done. Like I said, I can barely get my own s--- done without having to do someone else’s on top of that.


GERD CLINIC

We had one final piece to the puzzle to put in place. While in the midst of the hernia upper GI series, GI visit, GI struggle, and “Dr. House” help...we were trying to see the surgeon who runs the GERD clinic at CHOP. He is the one who discharged Ian because he was doing so well immediately after CHoR discharge.

This past week, we were able to meet with them. He was not the least bit surprised about our GI trouble. He was a nice shoulder to lean on and followup with. He knows Ian very well. He did feel that making a consultation appointment with the director of the department, or seeing our Dr. from our inpatient visit was a good idea. He also told us that working with someone back home might be ok, since the motility department director knows who to call, and they know him.

Dr. B said that he has only seen one gastric emptying scan with worse results than Ian's.  While not encouraging, it is hopeful the meds will continue to work since they are doing such a great job now.  He did mention pyloroplasty, gastric pacers, and J-tube as last resort options down the down.  Unfortunately these comes with several risks and side effects such as dumping and retching, amongst others.  Hopefully we can stay on the path to success and see long term relief for Ian.

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This brings us up to date on Ian’s medical journey. As side notes, Ian has new foot orthotics for his shoes and has had recent blood work done after being on growth hormones for 5+ months. He is growing extremely well and everyone is happy with his numbers. This week, he turned 28 pounds.... putting him almost in the 20% percentile for weight. His height is escalating rapidly as well, but not unsafely so. He hasn’t been sick and is a very happy little boy. Ian eats between 28-35 meals a week. We are down to about 2-4 meals a week with troubles (retching-vomiting). This is a huge decrease in relation to the 25-30+ troubled meals before treatment. Ian seems to enjoy eating again and even likes to help pick out his food!




CHEESE!!!!!


Tom and I continue to be overwhelmed by everyone’s love and support. While we know our road is tough, we remember the other families who are also struggling. We recently lost a little boy in one of our online support groups. He was a bright, happy, strong little boy. I loved looking at all of his smiley pictures. There are lots of children and families we pray for every night. Being part of such a loving community keeps us strong and brave. Thank you to everyone.


Balloon release for the loss of a sweet, smiley little boy
Balloon release for the loss of a sweet, smiley little boy

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