Care conference and a plan

Today was the care conference. Long awaited, and worth the wait. It went well. We have a supportive team for Little man.  The main goal of the upcoming hospital stay is for food trials and to find Little Man a diet but also to see what is going on in his body as it accepts or rejects a food; what labs, stool tests, vitals, match to his crying/disturbed sleep/stomach cramps/irrational behavior.

The plan: Scope the week of Oct.10- check for intestinal healing from past reactions; as well as a repeat/follow up on his dissacharides (enzymes used to digest sugars in the body, last July this test revealed his levels as quite low).

Admission Oct.17 for ~3days while we trial Zucchini! He will have labs run throughout this process (before feeding, during, etc), vitals every 4hrs or so (blood pressure and temp), and stools will be monitored for signs. His labs will show that his body looks like it's fighting an infection if he is reacting to a food (we've seen this in the past but have not had a time when it is recognized as directly correlated). We will also have a chart to monitor the subjective symptoms; what we're watching for with those are a building pattern (as the body gets overwhelmed). Essentially- it's like he has the flu and is being asked to run a marathon - how would you feel? How would your body respond? That is the closest I can come to describing what I see happening to him.

We will stay in for ~3days, and then go home for ~5days (if he reacts, going home will be to rest; if he doesn't react, going home will be to continue the trial at home; having a baseline done at the hospital. We have no idea what to really expect and we have to start somewhere. So, this plan is where we will start.

Only time will tell and for now, we'll continue to enjoy this "down" time with him.

children grow up as I’ve learned to my sorrow...

Mother, O Mother, come shake out your cloth,

Empty the dustpan, poison the moth,

Hang out the washing, make up the bed,

Sew on a button and butter the bread.

Where is the mother whose house is so shocking?

She’s up in the nursery, blissfully rocking.

Oh, I’ve grown as shiftless as Little Boy Blue,

Lullabye, rockabye, lullabye loo.

Dishes are waiting and bills are past due

Pat-a-cake, darling, and peek, peekaboo

The shopping’s not done and there’s nothing for stew

And out in the yard there’s a hullabaloo

But I’m playing Kanga and this is my Roo

Look! Aren’t his eyes the most wonderful hue?

Lullabye, rockaby lullabye loo.

The cleaning and scrubbing can wait till tomorrow

But children grow up as I’ve learned to my sorrow.

So quiet down cobwebs; Dust go to sleep!

I’m rocking my baby and babies don’t keep.

- Ruth Hulbert Hamilton

One of the blessings of our FPIES, is that we have had to slow down.  We weren't a family that was always on the go anyway (yet), we certainly enjoyed our time to just "be" and already had beliefs that this is a good quality to teach children in this fast-paced world.  But even more so, over the past 2yrs., we have slowed down our pace- for Little Man's chronic illness.  We don't go to too many functions with food, we stay close to home because of Little man's eating schedule and specific needs, we don't go out to eat.   Are all of these things necessary?  Depends on whose standards you use.  We have our families standards and by those, they are not.  We, of course, still look for ways to involve the older boys in extra activities outside of school, and of course feel guilty that we can't do more- that keeping up with the Joneses' feeling sets in from time to time.  And I blame FPIES.....

And then in the next minute, I thank FPIES as my almost 11yr.old, and 9yr.old play with Lego's, drawing in their 4yr.old brother - absorbed in creating and imagination.  Or when they are all playing together, with Little Man,in their playroom- be it blocks, trains, a zoo or a fort.....kids being kids.  Keeping the outside stresses down, and maintaining safety at home has been much more thriving environment for our kids to grow in over the past 2 years.  An environment that we maintained while our older boys were younger but that we were quickly losing track of as they grew.    And I thank FPIES.

I have a 27mo.old on a bottle and an infants schedule, whom I have never left outside of family's care for 27mo.; and I blame FPIES. 

I have a 27mo.old who still loves to be rocked while he takes his bottle, and cuddle into sleep, and cover me with hugs and kisses; and I thank FPIES.

At the end of the day, I thank FPIES because as we all know, children grow up.....

Dinner as a family....

Sounds like a simple concept doesn't it?  Something we even take for granted from time to time.   A time when the family comes together, to sit and share....and eat.  

Just when we were at a low time with this and Little man (earlier this week he literally cried, insulted sobs, because dinner was being served).  He simply wants to be included.    We've done ice, and millet puffs, or we just include him at the table and let him play with toys, or sit on our lap; while not focusing on the food.   Well, he's now 27mo. old and that gets more complex, he's a smart little boy.  He "pretends" to eat and chew so well that I've thought he had gotten a crumb or something when he does it.  No, just playing with his pretend kitchen/food....trying to be like everyone else.   We, of course, play along just like you would with any other child- just trying to keep it a healthy growth for him.  Food is everywhere, we can hardly avoid it but we also do not need to be reminding him constantly that he can't have it.   Which is what his tears earlier this week were telling me....

Well, he may only have a few ingredients but I can get creative with those few ingredients.   Thanks to moms like:  Baby B's Mom & Samaya's mommy for inspiration to making creative foods out of simple ingredients; I made some new cookies for Little Man!   Same ingredients (millet flour with his hemp milk formula- so essentially, millet flour + hemp milk + arrowroot starch + safflower oil) but put into little tiny baking cups and he had star, heart, circle, square, oval shaped cookies!!   "Yummy cookies, more please" as he ate them, "yum good"....he is SO excited to be included, and he gobbles up every.last.crumb.  

I hope it is a preview of the food trials to come....that he will willingly ask for foods, the foods will agree with his tummy, and he will ask for "more"!

Fully Rely on God

Monday was a very long day- but ended well because all 4 of my children were sleeping under one roof. Little man got dismissed (finally) at around 2:30pm, I had a few quick errands to run, get boys home from school, and then try and unpack and get settled in while making dinner, we also had the home health nurse come by and teach us what we would need to know for hooking him up to his IV nutrition- it's all kinda simple actually and kinda neat that all his equipment fits into a backpack size bag- why can't they do that at the hospital instead of the darn pole?! We choose when we want him hooked up, just knowing he will be hooked for 12hrs. So, we're doing it overnight.

The day had gotten so long, and I was so weary. I even went to bed "early" (9.30)- just didn't have any more to give, my babies were all sleeping, so I gave everything to God- assured that I would wake up refreshed and renewed, that God would give me the strength to keep fighting this fight....to keep fighting for our Little man's voice, and not only his voice but the voice of so many other kids who experience many of the same symptoms he does with foods- symptoms that don't fall into where the research has been for FPIES, symptoms we're not sure if/when the research will cover; but more and more I read and learn about these symptoms being recognized and tied together.   I am hopeful.   Research takes years, and it takes multiple studies to create evidenced based medicine from. FPIES research will benefit most from multiple Food Allergy Clinics and Research centers as well as published papers from physicians learning about this horrible food allergy.  It is comforting to know that there are already food allergy clinics all over this country, doing active research right now. Doctors all over the country (and world) are learning more about FPIES, and really good and compassionate doctors are recognizing they need to learn even more. I continue to be in awe and amazement over the compassion so many good doctors have with this illness. 
FPIES children now can, and do, teach doctors just as much as research will in the future and we can be their voice to help.  That has been a piece of my "fight" for my Little man's FPIES for quite some time....when some doctors shot us down turn after turn, after turn- telling us he wasn't really "that" sick, or not sick at all, or even suggesting on multiple occasions that it was just me- even trying to see if his daddy would tell a different 'story'- because it really couldn't be that bad with the foods we were trying to give him, or the formula that 99% of kids tolerate and grow and thrive on.

I believe God is giving me this learning experience, (with my mouth and resolve) to use our experiences to help other children. I believe I had a "calling" to the nutrition profession, for my boys. I believe if we maintain our resolve, we can help our physicians learn one by one, about this horrible diagnosis. Personally, my resolve is to take it a step further, hearing the voices in the support groups I have been a part of (and have become a part of me), into my work with The FPIES Foundation. These kids and families need the help now, the research needs to come from as many Food Allergy clinics as it can, and of extreme importance- the awareness needs to be raised....not only to the existence of FPIES so that every practitioner that has heard of it thinks they understand it from the research that is out so far; but that they hear from the voices of the children living through it right now....that voice can be unified and magnified in The FPIES Foundation....a place for support, education and empowerment.

Now, why did I name this FROG's?  My 4yr.old's first day of preschool was yesterday. The concept they learned was FROG: Full Rely On God. It was the message I needed. A gentle reminder that He is in care of everything. "....above all, remember....act as if everything depended upon you, and pray as if everything depended on God" (SH Payer). I pray everyday (and continue to ask for prayers from everyone) to give our Little Man the health he needs to thrive, and his daddy and I the graces for strength, wisdom and resolve.
Full Rely On God....simply concepts, vast meaning.

Cost of Livin'

I keep hearing this song play on the radio, on my way to and from dropping off the boys from school, taking Little man to appointments, to and from the hospital when he is admitted: Cost of Livin' by Ronnie Dunn and it makes me think of my husband and the weight of the cost of FPIES on our family (and I imagine shared by so many others).   The cost is high but the value is immeasurable.   The cost of living with this chronic illness is high: formula, special foods, compounded/specific medications, multiple tests to rule out other diagnosis', specialist visits, hospital stays, keeping a family of 6 afloat through all of this.....nothing in comparison to the outcomes of health for our Little Man.  

Little man's daddy holds this end of our rope, his dedication to his work provides our family with our cost of living....and by God's graces, we have all we need.   Who else tells anonymous donor what we need so it will appear in our mailbox on the very day we need it most?   Who else assures donors at our Benefit how much we needed contributions to our Little mans current cares and needs, as much as, we needed contributions to FPIES research?  Who else would whisper to family and friends, and friends that are like family, to supply us with groceries?  Who else gives strength to a sister to move to live with us while our families needs were so very high that only a sister could step in for?   Where else would the messages me received to "fill the boot" for our trip to CHOP, again.   Where does the generosity come from to loan us an RV to drive our family to CHOP, again.  More than just understanding for sick leave from co-workers but donations of time for more.  This is only a partial list of God's graces that surround us like a blanket of warmth and protection, assuring us that He will always provide our needs- in any form He can.

Admitted, what is the plan?

We go in for our planned admission.  We check in midday and the discharge planner has already been in - so that is all good signs...before we've finished admission paperwork, we're working how things will be lined up to get us out.

So, that is what this admission is for: to initiate TPN (and work through what he can tolerate of it), and then set up for home TPN. Our pediatrician reminds me it is not typically done but that it can be done (home TPN) but he is going to do the best he can to help arrange it for little man. 

While in the hospital, little man's daddy and I take shifts. I take the day shift and start after I drop the boys off at school, and Jeremy takes the overnight shift. It makes being there a little less hard. I miss the older boys when I'm here at the hospital and I miss little man when I am home. It aches how much I miss them, and our routine.   So, we are anxious to be able to go home. Our pediatrician has helped us with that, and agreed to help manage his care at home, while he continues on IV nutrition- in preparation for food trials. So we will be going home tomorrow morning! We will have access to 24/7 nursing care, but the goal is to teach us to do most of his needs- to our comfort level.

We will do the IV nutrition (he is still getting his hemp milk formula bottles as well- just less) for the next 2 weeks or so. The goal is to "beef up" his body, make sure that all his nutrients are at good levels, and his weight is solid, and his gut is healed. We will then be re-admitted in a few weeks, where he will have a baseline assessment done (that will likely include repeat scopes), and then we will begin food trials- monitoring his symptoms and labs. We will have a care conference and I have written up the discussion points, from the consult at CHOP.

I. Little Man's Classic FPIES:
1. Pallor
2. Blue lips and feet (cyanosis)
3. Lethargic
4. Body temp changes
5. Blood pressure changes
6. Vomit
7. Diarrhea

II. “Other” (not clear if FPIES building, or other; but concerning)
1. Mottling
2. Mouth itching
3. Extreme stomach cramps/pain
4. Disturbed sleep
5. Irrational behavior
6. Blood pressure changes
7. Body temperature changes
8. Significant changes in oral intakes (may be difficult to judge if on TPN)
9. Acidic stools (acid ring)
10. Inconsolable crying
11. Reflux/excessive gas


III. Labs:
1. Platelets elevate (although may be skewed with TPN due to heparin in line?)
2. White cells decline
3. Hemoglobin declines
4. Pre-albumin declines
5. Blood in stool (visible)
6. Change in body temp (high or low)
7. Changes in blood pressure
8. Diarrhea (green and mucus)
9. Constipation
10. Stool studies? Calprotectin, elastase?
11. Weight loss (may not be able to use if on TPN)
12. Scope (repeat scope at baseline for enzymes).


IV. Define parameters for:
1.Yielding food trial (a pause to step back and assess symptoms)
a. Worrisome and unclear symptoms, continue with ½ dose
b. Symptoms that are making Sam visibly sick (fever, cough, no sleep….), wait 3days and continue
c. Building symptoms – progressive and persistent

2.. Stopping food trial
a. Any presentation of classic FPIES symptoms (listed above)

3. Pushing through symptoms-
a. If symptoms align with enzyme deficiency, proceed with trial with Sucraid given with food.
b. ???

4. Pain relief during symptoms? Stopping a reaction?

5. Home or In-hospital??
a. Home TPN-ongoing but only between trials ( ½ strength)? To maintain Sam’s weight and safety during and between trials.
b. Food trial in hospital 4+days but go home in between
c. In hospital observation status vs. full admission (to allow for going home or at least out off and on??)

Those are my thoughts, from what I've learned about FPIES, what I've learned about Little man and where we are at in this journey. We are scheduled to discuss them in a care conference, before next admission for food trials.

Reaction? Vit.C deficiency? Anemia?

What is going on?  I don't even know what his body is struggling with right now. Is it his anemia? His Vit.C? the Vit.C pill we have been giving him since last week? The new beet root one?

He has been doing pretty well all week, gratefully and thankfully well. I don't even know what is going on but yesterday he was fussy a lot off and on, he wouldn't climb the stairs- just sits at the bottom and calls/screams for me. He took a really long nap yesterday and today (not a bad thing because earlier this week he wasn't napping at all!).  All day today, both Jeremy and I are noticing he is pale looking, purple eyes, and the most concerning symptom is this breathing- kinda a shortness of breath like he has been running around. He isn't gasping for breath, and his heart isn't racing- why is he doing that?

This is just one of those times when I don't even know what to do. Bring him in? Where- the ER? I go back and forth all day, I will look at him and just think - something isn't right and resolve to take him in/call in; and then he will start playing and then I feel like- maybe I'm just seeing things or over-reacting, maybe it's nothing at all....and than back again....around in circles, what to do?

And, of course, it is a holiday weekend...and he's going to be re-admitted this week anyway but will we even make it to then? Praying tomorrow shows me another sign of what to do....wait it out, or take him in, or what?!

Don't Quit

I have so much to update on here, so much has been happening over the past month:

• Scope results came back
• Considering TPN
• Functional Medicine
• Decision to hold on TPN
• New Probiotic
• Multi layered treatment plan?
• Back to CHOP?
• Heat rash?
• Progressive weakness and worsening symptoms?
• Scurvy and a PICC line
• CHOP appointments
• The Plan now?
• The FPIES Foundation!

So, I have a lot to of posts to fill in on here but as we look at the upcoming weeks- it looks like it will require a lot of hospital time.   I really do not like that we are back at this place, it seems like we were in this same place a year ago.  Will it be different this time?  Will we get a tiny menu?  We will be able to decipher his symptoms so we can help him?  How are we going to be able to cope as a family with being in the hospital for such an unknown timeframe. 

I need to get things ready, clean the house, grocery shop, school shopping, family time, so much to do.   As I am doing some laundry, putting a load of clothes in- a card falls down from the shelf above the washing machine.   It is titled "Don't Quit".    It is a holy card, I don't even ever remember seeing it before although I am familiar with the title.   Little things like this are all it takes for me, a little sign to reassure we are being taken care of....our needs will be met.    There are so many difficult things about this diagnosis but there is plenty to be grateful for.  Don't Quit.   A fitting and timely reminder.



When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit --
Rest if you must, but don't quit.

Life is strange with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow --
You may succeed with another blow.

Often the goal is nearer than
It seems to a fair and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late when night came down,
How close he was to the golden crown.

Success is failure turned inside out --
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit, --
It's when things seem worst that you mustn't quit.

-- Author Unknown --