Tube Change

Discussion with the Surgery Nurse Practitioner (NP) came to the conclusion that Little Man needed to be seen- because of the granulation tissue, the continued pain/aversions, and now this belly button rash (which could potentially be indicative of infection/abscess).   She decided that it would be better to wait until his surgeon could be present as well, and help evaluate what may be going on with his tube- why he has so much drainage/seeping, granulation tissue, sensitivity, pain, aversions, etc... We discussed that changing the tube (different brand, he has an AMT Mini One right now and there is another one that is similar and will "fit" in the same "hole" called a Mic-key button).     So, that afternoon we went in and they checked his site and decided he needed a change -- we have nothing to lose and everything to gain at this point.   Typically the tube is changed at the 6 week mark standard anyway- so we are just shy of that and he needs a change.    We are hoping this is the ticket for his body to accept the tube better, so he can be less averse to it and accept it more - and then accept feedings.... 

They noted that it should not still be draining/oozing as much as it still is, now 6 weeks post surgery.  The surgeon feels that it could very well be likely that his body is simply rejecting the material of the tube, so a change in brand will hopefully change that.    We shall see.   I am hopeful because it already looks better!!  He wasn't nearly as upset, once we were done- he was good to go and giggles on the drive home.  He had a few tantrums that evening and has some red-rosy cheeks and then I remembered....I saw her putting lubricant on a papertowel before she switched the tubes out....it is standard to use a little lubricant to help the tube slide into place and I don't know why I didn't think of it before but he has had previous issues from lubricant!!  I think I will have to have them add Lubricant to his allergies!   

Speaking of AMT Mini-One.   A short time after Little Man got his tube, I sent away for him to get a "Mini Buddy", similar to a "Tubie Friend".   Mini-Buddy is from AMT Mini-One and Tubie Friend is from Mic-key button.   They get donated stuffed animals and give them "surgery" for them to have the medical appliances our little one's have.  It is a visual aid, a teaching tool, a comfort item, and a friend.  And, most of all for us, it has helped Little Man to be more familiar with his tube. 

These are great groups, if you know someone with a feeding tube or getting one- contact them for a buddy! 

Chocolate??

We've been doing well the past few days.  CheeCha puffs are going great, and bites of baked potato are without any symptoms at all!!!!!!

  

Now with getting a taste for new things, he has started asking for more things!   This little boy has few foods and few words but he said "chocolate please mommy, yes?"  and "ooooohhhhh, chocolate, yes?" when he climbs up in the cupboard to get it.    

What chocolate???   Well, at Easter time is when he first uttered the words chocolate- we didn't even have any candy in the house yet so I am not sure where he got the idea from but he looked up at me and said "chocolate please mommy, yes?" and this smile that would melt an iceberg....Now, again back to the approach we are at right now with Little Man, that if we know something isn't UNsafe- even if we weren't planning on trailing it....we want him to be able to try it- even if it throws a current trial for a loop, or a pause.  FPIES challenges just never seem to end.   

We don't want him to have negative associations with food and we certainly don't want to be keeping potentially safe foods from him- even if it is "just' chocolate!   So, to the store(s) I went....to find Enjoy Life chocolate chips, which I knew I had found in one of the stores here in town at one time.    

Enjoy Life is a brand that is allergen friendly and many corn allergic people can tolerate them, although some can not- so we are not sure if they are safe or not but they are the closest we can come to safe since other chips have many more allergens in them.    Enjoy life has few ingredients and they make a mini-chip.   Well, he was eating a lot of them and his temper was VERY short (a red flag for us for his calm natured little boy), other symptoms were popping up too but he was BEGGING for the chips almost all day long for 2days before his daddy just threw them away- his symptoms were building and his interest was not lessening so we just told him they were 'gone'.    Well, he proceeded to take the chair and climb up to the cupboard to check for himself, which is where he found the Hershey's Cocoa!   "oooohhhhh, chocolate, yes?".   I don't know if it is the chocolate or the palm oil/sugar in the Enjoy Life Chocolate chips, or a corn-tamination or what.   So, I figured we've eventually have to finish the trial with the Hershey's Cocoa (safe for corn allergic)- maybe by baking with it or something but he wants this cocoa powder today so, I thought I'd let him have a lick of the cocoa and he'd realize it doesn't taste good and that would be the end of it.    NO!!  He LOVES it!?! What??  I did talk him into mixing it into his hemp milk formula- so it's sorta like a pudding; but he prefers it DRY!   So, over the past few days he's had bites/licks of this Hershey Cocoa.    I can't say it is going great but it isn't causing any building FPIES symptoms that I would normally be able to see by now,  or the same symptoms as the Enjoy Life chocolate chips were.  

That said, I've hidden the cocoa anyway and am going to have to just put it on the shelf for a bit because there are too many things in the picture right now, and I don't want it muddy over chocolate...since there are some symptoms (that are likely from the chocolate itself, not allergic)- he has some disturbed sleep and he had an explosive diaper this morning.    Now, I can't say it is all from the cocoa because 2 nights ago, he spilled his daddy's cup FULL of Mt.Dew and it splashed EVERWHERE (it was all over him, and some got on his CheeCha puffs -- although I didn't realize that until later so he may have gotten some Mt.Dew exposure (High fructose CORN syrup)....his daddy usually drinks diet (which still has corn but not HFCS) but I had bought him a case of the regular for a treat for his birthday.  Well, I can't be sure little man didn't get some exposure - from being on his skin or splashed on to some CheeCha puffs he ate, or....I don't know.  He slid downhill these past 2 days, his energy was down, his mood was sour, he had this weird rash around his belly button (where the soda splashed??),....and then there is the diapers and the disturbed sleep (from cocoa or corn-tamination?) OR, is his tube bothering him?   

Muddy picture, fast.   Back up....let's figure this out.   He is increasing amounts of Alimentum in his hemp milk formula that he is drinking- he's up to ~15+/day now!  (1-2oz. per bottle)!!   Can't be sure that isn't coming into play here also because we observed building issues with increased amounts of Ali when he was on the NG tube but we thought that was due to the tube and the lubricant they used to place it but we still haven't ruled out Alimentum intolerance (worried it is too high in sugars for him, or maybe the source of fats are a problem for him).  Or, is this all related to tube pain?  Possibly.  We need to rule things out one by one.  Corn was a potential exposure- symptoms flared up, we should see them flare back down, back to a baseline...he obviously hasn't continued to receive Mt.Dew splashes.   Cocoa- take it out and see if things improve.   They were improving already this morning, so I am still not sure what to think. The other factor -  the tube or a abscess or infection brewing, is this belly button rash related to tube or some random eczema rash?  A call to the surgeon's nurse and it is decided he needs to be seen....

Bittersweet

Little Man has been drinking the Alimentum RTF formula, little amounts mixed in to his hemp milk bottles!!    It had been too many days since we've been able to use his tube (and not sure when we'll be able to because he is still guarding it in pain/sensitive and the granulation tissue they just removed is already back!) 

Last Thursday afternoon, his daddy thought we may as well at least try to mix it into his bottle so we put a 1/2oz. in his 5oz. bottle and he drank it without noticing one bit!!!   We thought, could it really be??   

Well, with the recent ingredient change in the Living Harvest Tempt Hemp milk to add sunflower lecithin and him having reactions to this, I have started to make the hemp milk from scratch- a company called Manitoba Harvest (guess we need to move to Canada since half his food supply is from Canada!) makes a product called "Hemp Hearts"- they shell the hemp seeds and package them for sale- hemp is used to make milk,or flour, or serve on salads and etc.   They have a "nutty" flavor - mild nutty....we've had to mix this homemade milk into what we have left of the Tempt non-sunflower milk to get him used to the more nutty flavor (which he has been doing great with)   Well, it looks like having that nutty flavor masks the Alimentum formula flavor/smell MUCH better then when we were trying to mix it into the Living Harvest prepared hemp milk during the trial.   I can't even smell it once we've added it to the bottle!   

We added 1/2oz. a few times on Thursday evening and then through the night too, we upped it to 1oz. in a few bottles on Friday and by Saturday I had added an 1-1.5oz. to every bottle!   Sunday, he even took a few with 2oz. in it!!  He got 13oz. of Alimentum yesterday and we can already see the difference in his energy levels (his Vit.C levels have been low again, thus causing his iron levels to dip dangerously low again and so between that and his tube giving him trouble- he hasn't been too active.    Yesterday, we couldn't slow him down!   

Something is better than nothing, even though it's not enough for all his nutrient needs yet (of what is missing from the hemp milk formula for his age) and we aren't sure how much he will let us add before he starts noticing (we're going up slowly because we don't want him to mistrust his bottles).    

We are so excited about it and yet it is bittersweet......I knew we could get him to drink it mixed in eventually... it's a little sad having gone through what we have and what he has endured for these tubes (NG and now G) when he's now drinking it....although not nearly enough for all his nutrient needs without a better menu; and that is what we knew we would battle (drinking adequate amounts) but with his tube giving him SO much trouble this week and now it looks like there may be something brewing - infection or abscess or something because the granulation tissue came back already, the site is still too painful for us to touch at all (or he is simply so averse to it from all the manipulation and negative experiences so far), and on Saturday I noticed some green drainage oozing from it so all of this will need to get checked out and the NP on Thursday said he will need to be sedated for some tests to see what is going on with this tube not healing well.   So, our excitement is capped a bit but we are very excited about him drinking the Alimentum (and feeling better on it), and potatoes continuing to go well!!   

Potatoes and Good Days!

Ok, NOW we get to the good days!!   Despite all the granulation tissue and tube issues this week...we are having a good week because Little man is tolerating potato!!!    

It started last Sunday when we had decided we would discuss adding the beet root compounded VIt.C (it would be a trial) to his Alimentum feeds- even if we could only get one Ali feed in per day, we could use that feed to get him all his Vit.C (the biggest missing nutrient from his hemp milk formula and the amount of peaches he eats isn't enough to fill in the gaps when he is low).   We went to an evening church Mass and after church, we have potluck and it was right at dinnertime and someone made some really yummy smelling dishes- everyone was hungry!  Including Little man!  He took his place in the buffet line and grabbed a plate and fork and asked for food.   

Many meals at home are hard for him too, the smell of the food (natural instincts), the gathering of the family,...he wants to be included too.  And we WANT him to be included too- and for it to remain a positive experience for him, not one where he feels left out or deprived.   So, we've found safe ways to include him, but somedays (even at home) we miss the mark and either nothing is distracting enough from everyone eating and him not, or I don't have anything to offer him.    Today, at this potluck, was a combination of both.   People were gathering, I was there alone with the boys (hubby working) so no one to take him out to distract him + yummy smelling food + a desire to be included (kids his size and age grabbing plates)+ dinner time= hungry....but I did not have anything for him!!   I, of course, brought his bottles so I offered him that to which he said "yes" he wanted his bottle.   He claimed his spot at the table, fork in hand, with his empty plate.   I got him his warmed bottle and he looked around and declared he did not want his bottle.   I ran to the van to see if I had some millet puffs stashed away- he hasn't had them in a long time but maybe he would be distracted by this safe snack.  But, no puffs.  Shoot!   I went back in and scanned the buffet line, a clean fresh garden salad- lettuce, cucumbers, peppers.  He hasn't reacted to any of these foods, they aren't UNsafe, so I put some on a plate and hand them to him- he is excited at first but then not as distracted as I had hoped.  I decided, on a-still-don't-know-what-made-me-do-it-whim to give him some mashed potatoes!  I knew they weren't boxed potatoes, but that they likely did have milk and butter in them.   But I am still encouraged that him not having any acute reactions to Alimentum (a broken down milk protein he had previously reacted to as an infant) means that he is outgrowing/outgrown of his milk allergy (and the only way to know is to have him try it).   We aren't in any rush to try dairy because of fear that it would sensitize him to the broken down dairy in his formula but he hasn't had an acute reaction to it....I made the quick decision to take the chance - on potato and on dairy, and let him have a tablespoon or two.   On the back burner in my mind is his growing POSITIVE relationship with food- to be included, to try new foods, to learn to eat and thrive on eating.  FPIES doesn't get easier as they get older, the challenges just change.

I put a tablespoon on a small plate and he devoured it!!  Well, nibble by nibble in the way he devours food!   I nervously sat and watched, immediate reactions of hives or anaphylaxis aren't our concern but this could be a long evening and a set back....was this a weak moment or a good decision??   He asks for MORE, he ate another 1tbsp or so.   I decide I better find out exactly how she made them, and what ingredients were included.    Real potatoes, milk and butter....but she usually also adds sour cream and cream cheese (they are REALLY good and popular and she makes them every potluck!), today she did not.   She even comments on THIS being the reason why....everything happens for a reason.   

We got home and he was overtired, and had a few tantrums and I was getting really nervous that this was the beginning of a reaction....mixed emotions were setting in- guilt, anger, fear....I finally got him to settle down and he fell into a deep sleep.   Huge sigh of relief as I watched the clock.   It was 5:15pm when he ate the potatoes, typically it takes 6-9hrs (sometimes longer although he is NOT the norm because it is usually 2-6hrs) when we see a reaction.  11:30pm came and went, 12:30, 2:30, dawn, he woke up happy and ready for the day!  What??!?!!  NO vomit??!   No middle of the night choking on green vomit fest??!   

Ok, dairy ingestion aside (cross that bridge another day) but this is a GREAT sign for potato!!   We have done potato a few times in the past few months and some days it went ok and other days he had symptomes.   We had started with baked potato.   One  day, an unplanned trial (kinda like the one above) began when I had gone to Wendy's for dinner for the boys - I decided to include Sam and get a baked potato (plain of course), dinner "on the go" just like his brothers (they get the baked potatoes too)- he was THRILLED and ate a few bites.   That night, NO reaction symptoms and the boys started to think of ways to add potato to his diet.    The timing wasn't good and we decided to not proceed with a full trial since we couldn't risk a reaction at that time.    We came back to potato during Dec/Jan trials we were doing.   Baked potato worked once or twice but he lost interest quickly, so I found some potato chips NOT made with corn or vegetable oil (the oil used was sunflower or safflower; he is safe on safflower but sunflower hasn't ever been fully trialed.  We got vomit - FPIES bile vomit- from these chips, changed brands (still same oils), also vomit.  Was it potato or the oils?   The oils won't always cause a reaction in FPIES kids, but little man has had reactions to oils (corn) so we can't be sure.    

Tolerating the mashed potatoes is REALLY encouraging!    Monday morning, his brother asked for a snack and so little man did too- this isn't new....he often asks for a snack when his brother does, everyday hopeful that he will one day get to eat what his brothers eat.   Monday, I decided it was time to pull down the bag of CheeCha Puff snacks!!  They are potato starch, potato flour and salt.   They are puffs shaped like wheels, a company from Canada and you can only buy them online (Amazon).  I got 3 sample bags from the MN Food Allergy Support Group Fair this past fall from The FPIES Foundation samples CheeCha puffs donated to give out (cases of full size bags!).   Since you can only order them online, and by the case, I took advantage of the samples to have enough to do a trial before we buy the case. 

He ate half the bag the first day!!!!  He finished 2 bags by Thursday!!  He LOVES them, and has been eating them constantly!!  We SHOULD be able to call potato a pass, with such large amounts consumed with NO symptoms of concern....but I'm nervous to say "pass" just yet.   But, he's getting them as if he had....he couldn't be happier!!!   

So, there is our good days!   So many other things going on but he is tolerating a NEW food, a 6th food to his safe food list, something he can have in a convenient snack too! Something that he can eat in large quantities without causing issues with this carbohydrate intolerance (they are puffs of air), something thatmakes him feel included and BE included.  

More Granulation Tissue

Ok, maybe I left out most of the "good days" out of the last update!  But getting comfortable with his tube and tolerating the feeds WERE good days...even though they were sorta short lived.  It was hard to see him slide downhill so quickly, and discouraging. The granulation tissue came back with a vengeance!  It seemingly is not there one minute and popping out a minute later- it happens fast.   It is a little "lip" around his tube site that is pink/red and inflamed, it contains tiny vessels and so it weeps and bleeds, and when rubbed, weeps and bleeds some more.  It is the body fighting the wound- not quite letting it go to scar tissue.  Many people with tubes deal with it, some off and on. They are surprised that he is having such significant issues of it so soon but it isn't unheard of so the thought is just to treat it like anyone else.  

The issue comes because he will not let us touch him when this granulation tissue begins to form, and then we have to go get it burned off so then he becomes even more averse to being touched....and then we're stuck in a vicious cycle of not getting his feeds in and him having negative associations, pain/sensitivity with his tube site.  They say that the granulation tissue should not be causing him pain, that it doesn't have nerve endings and is not painful.   Well, little man tells us another story and is clearly in pain!

We are worried about him getting his nutrients, he needs the formula until his diet can be built- and since that is many months away- is the reason FOR the tube, so to go through everything he has and then not be able to use it is so very frustrating.   

We went in on Monday morning to get the granulation tissue looked at again; sure enough, she had to burn a significant piece off- he was more upset about being held down than about it being painful....I can tell his pain isn't all about granulation tissue, there must be something else.    We had the Nurse Practitioner hook up his extension while we were there and do a "feed"; but we didn't leave it hooked up; and although we were able to get one more "feed' in that afternoon, and one on Tuesday but then Tuesday afternoon, we brought him back in to get the "lip" burned off again because I guess if you stay right on top of it at first signs, it will help it stay back a little longer.  When I say, "burn"- it means to use Silver Nitrate sticks and cauterize it off.  It turns the area black and gives his skin a "blueberry" stain (looks like ink), and then it eventually dries up and falls off.   At this appointment, the nurse had to clean off this dried up residue quite a bit because he had been SO sensitive, he was not even letting us CLEAN it!  She comments about how the leakage and dried stuff can make his skin more sensitive, causing some erythema (redness/rashy).  I'm not sure if the erythema is caused by the tube/site leakage or an issue with the steroid cream we need to use to help treat the granulation tissue between silver nitrate treatments....could be both but he doesn't always have this redness.  Anyway, she asked about getting him in the bathtub.   They told us not to bath him until he was healed, 4-6weeks!   We are just now on the 4week mark and we just honestly were not taking any chances of him getting an infection- especially since at the last time he had the granulation tissue removed, he had a spot that opened up and bleed.  Why take chances?   He's had bed/sponge baths for the whole 6mo. he had his PICC, what's another few weeks?   Well, we got the clearance to do some baths, that has helped a lot with keeping it clean! 

Wednesday, he wouldn't let me touch him AT ALL, he even fought and cried during diaper changes, afraid I would touch his site too?  Or was that even painful for him (moving his belly to get the diaper on and off and him cleaned up)?  His daddy was at work and besides, we have already decided we will NOT be holding him down to hook/unhook his tube extension- between him having a PICC line that needed cleaning/site cares (involves a piece of clear tape, taped over the line that needed to be ripped off and sterilized under and then replaced) once a week for 6mo., not to mention all the lab draws and multiple other hospital tests, procedures, etc he's endured- this kid has strong aversions to being touched unless he wants to be! STRONG! (and strong he is!).    So, all of Wednesday he did not get any feeds at all.   I am really getting uncomfortable with this as this is not getting better as quickly as we had hoped and it is too many days without the formula, with the nutrients he needs.   Of course he still has his hemp milk formula, and millet and peaches but it isn't enough anymore....   

Clearly it will be weeks, possibly months before he is not so averse to the tube and letting us hook him up the multiple times/day we need to- we discuss how we need to come up with some new plans.    We have previously looked at another formula powder called ProViMin- a powder that we could add to his Alimentum formula and concentrate it, allowing him to get more nutrients per feed and having to be hooked up less times.  It is Proteins (sodium caseinate and amino acids) and Vitamins/Minerals, no carbohydrate source and low/no fats- it is for metabolic conditions but it seems perfect for him....except the sodium casienate which is a milk derivative.    The casein in his Alimentum RTF formula that he is on now is hydrolyzed to be hypoallergenic to those sensitive to milk proteins, sodium caseinate is not.   We would be taking a risk of sensitizing him to dairy, when he otherwise seems to be doing fine on it via the hydrolyzed form in the Ali RTF.  But the benefit seems to be outweighing the risk more and more....

We called surgery back as instructed on Thursday to check in with what next steps we should take for the granulation tissue.  We discuss that over the last day, how he has resisted being hooked up, seems to be in pain, and something new I've noticed is how he is guarding the tube site- when I pick him up, he will automatically C his back as to avoid his stomach rubbing against me - it is curious that this is causing him so much pain and discomfort (especially considering the high pain tolerance this kid must have to be in the chronic pain he has lived with his short life). I ask the Nurse Practitioner if there could be something on the INSIDE that would explain these symptoms, she agrees that this is not a good sign, and he could have an abscess or something.   Under normal circumstances, he would get evaluated by doing a oral contrast study or ultrasound but she says these tests require him to cooperate - which she knows he will not do (STRONG aversions!).   He will need to be sedated and unless it is an emergency, this has to be scheduled.  So, it is decided that we will take the wait and see approach.  Wait to see if the sensitivity goes down, or if the redenss/pain goes up (abscess can become infected quickly so if he has any symptom concerns- we are to take him to the ER immediately.    

Good Days to come?

With the granulation tissue removed, he was having some better days. His daddy and I still had to work together to get him hooked up for his feeds, and he wasn't getting all of what he was supposed to but we were working our way back up.  His daddy was able to take some time off work to begin to work him back up a feed schedule so last week when he had to return back to the routine, I called our home health nurse to come out and help me get more familiar and comfortable with hooking him up by myself - because, 3 weeks in and I had not ever hooked up his feeding tube extension to his button on my own (we had kept the extension hooked up all this time, taped to his side; but with the granulation tissue complexities- we needed to be unhooking him so it wasn't pulling on the tube/button.  

The home health nurse got here and he resisted right away- he had skipped his nap, so that wasn't helping.   We chatted about his general tube cares for awhile and that seemed to help him familiarize enough and we made one last effort to ask him about his tube  (feeding extension) and where it was at - he casually said "oh, in the other room"; I asked him if we should get it and he said "yes"; and then asked if I could hook it up and if he would help, he said "yes, here" and opened up his button and grabbed the tube extension in an effort to hook it up himself!  I was near tears at how good he was being and how brave he is.   I couldn't quite get it so the nurse quickly jumped in- so as to not lose his enthusiasm for it!  This was a contrast because just a few minutes before, he was actually pulling at the button part, pleading not to be hooked up!   I dread the day he asks for the button to be taken off/out; or worse yet- if he tries it himself!  It confirms that we need to focus on his relationship with this tube- it needs to stay positive.  He needs to understand that it is for his benefit, and that it needs to be cared for but also that he needs it.  It's a fine line to walk with a 2yr.old!! 

We got him hooked up and a quick feed in him and I was optimistic that we could begin to get back on track with his feeds.   Over the next few days we were able to get a few added feeds in; so things were moving in the right direction --although he was still was refusing many feeds.   We can't fight this, so we just have to continue to keep it positive and concentrate on getting things healed so there isn't any pain for him....there shouldn't be pain. 

With the decrease in Alimentum RTF formula, we were seeing some decline in his energy, and know he needs the Vit.C to absorb his iron (as his iron stores are chronically low), thankfully his hemoglobin is holding (a recent lab check confirmed that).    So, we start talking about how we have the compounded Vit.C (beet root derived) that we still have not trialed yet, if he is only letting us hook him up 1-2x/day, we could at least maximize the Vit.C amounts with the Vit.C supplement.  Sunday afternoon, we decide that a discussion on Monday with the GI is due.  We aren't meeting his needs with the decreased feeds and we also need to follow up with Surgery as we're concerned over the growing granulation tissue again on the tube...how can we be moving in the right direction and still have so many things to challenge it?   We're trying to be patient.....

How to go from Feeling Powerless in Every Sense to Finding Peace in Every Situation?

How do you go from Feeling Powerless in Every Sense to finding Finding Peace in Every Situation?

FPIES can feel powerless, waiting for reactions, and over reactions of the immune system that is attacking something that is meant to nourish the body.   Being the parent that has to chose which foods, in a gamble fashion, that may or may not cause the reaction.  To cause your child to be sick - violently and/or for days on end.  So, how do you find peace in that?   Everyone finds it in their own way...

My faith helps me with mine, but even with a strong faith- I had to allow myself the stages of grief for this loss to nurture my child through food and instead to nurture him through a chronic illness that is little understood.

I still have times of feeling powerless with this allergy; but for me the key has been in being in tune with my inner peace and strength from Above, and not search for my own power,to help me on this journey.  Peace provided by Divine Love, and surrounded by family and friends that care so much for our family and our little man.   Friends that are like family, family that are friends....helping us in our time of need- through strength and prayers, and hope.  And of course, the newly found friends that make up our FPIES Family, friends that hold us up in prayer and who inspire our hope by learning together on this journey.

We trust in our Faith and that provides us Peace.  

Granulation Tissue

Thursday night was a rough night....it seemed all too familiar -  crying and not wanting to lay down in bed, waking every 1.5hrs - not hungry but crying.  I finally gave him some of his compounded ibuprofen and he slept a good 3hrs. before waking up and wasn't as disturbed when he woke up for the morning but still clearly something not right.  This is all adding up to too much, and I'm just not sure what to do next.  So, I call our GI doctors office and leave the message that something isn't right and we had just had a really long night, that he is having less and less Alimentum but in more and more pain- why is the pain increasing?   It must be reflux related but I'm nervous of what we will be able to do about it since he has not tolerated any meds before.   Also, why is it dramatically worsening instead of gradually improving?  

The GI nurse calls me back, and try to explain everything as best I can to the nurse and after telling her what has been going on, she said she would pass along to our GI and call me back.   Thankfully, our GI calls me back herself, she is concerned over the message that she got....we review what is going on and she agrees she thinks this is all stomach acid production related- that the biopsy's show the "peptic" inflammation, likely from the NG tube and now with the G tube, it will be an uphill battle as the stomach is responding to the foreign object and pushing out additional acid (we've seen the acid seeping out from the healing wound so I know it's a possibility).  

But of course, I'm still worried that the biopsy also shows reactive epithelium in the small intestine and mild chronic inflammation in the stomach.  But one problem at a time, and right now- he's in pain.  But, what is this inflammation from?  And is there a possibility that is increasing the reflux symptoms?   And not the G tube?  I don't know....

We talk about what to do about controlling the reflux so he can heal (regardless of what it is from). Which reflux medication do I think we should try? she asks.  He doesn't tolerate any!  She wants to try Karafate - a medication to help ulcers heal, essentially it coats the GI tract so that the acid can't do it's damage.  Ingredients: sucrose and aluminum.    Well, sucrose is likely derived from corn- do we really want a reaction on top of inflammation already present, on top of recovering from G tube surgery??  

I can't bring myself to say that it is worth the risk- aren't there other options?   We have some straight calcium carbonate powder- recognizing the risk of calcium supplementation on his iron absorption (calcium can interfere with absorption of iron), can we try using that- to coat his stomach?  We discuss that it will be in his best interest to try the karafate, if this doesn't work and his pain persists, he will have to be admitted.  She asks how his G tube site is, and I'm not sure- it doesn't look well to me AT ALL but I don't know what it is supposed to look like.   It doesn't look infected, and that is what we've been watching closely for.   The drainage (stomach acid 'snot') has slowed down considerably but there is this red ring around it that looks inflamed.   She decides he needs to be seen -she wants to evaluate him and she wants surgery to take a look at him.  So we head down for a squeezed in- not so appointment- appointment.   We are seen pretty much right away, the surgery team Nurse practitioner comes to evaluate his tube site and immediately assesses that he has some granulation tissue forming and that it needs to be burned off (silver nitrate treatments).   It isn't going to be comfortable but it needs to be done.  She doesn't really say that it could be the culprit to his pain but I have since read through some support groups and tube feeding foundations that granulation tissue can be very painful- and sensitive.  That would explain all the "owie tube" and not letting us clean or touch his "button", and resisting feeds.  She assures me that the silver nitrate treatment itself won't hurt but that he may be sore after.   So, we proceed to get it done (she takes care of it in the office)....this is NOT a pleasant experience!!  He has a spot on one side of his tube that is actively bleeding so she has to page the surgeon himself to look at it. Little Man is NOT happy and wants to just go home!   The surgeon comes to look at it and by then the bleeding is stopped so it is felt that the silver nitrate cauterized it off.   We are given a steroid cream to put on it at home, encouraging the rest of the granulation tissue to fall off (and hopefully not have to do the silver nitrate again).   

We get home (still screaming from the silver nitrate application), screaming, screaming, screaming.   We finally get him calmed down by taking him for a ride in daddy's 'truck' and when he gets back, we get some ibuprofen in his tube and he lays down for a (late) nap.  When he gets up, he is clearly feeling much, much better.   

First words out of bed the next morning were "play mommy" instead of cries and "mommy I need you".   He was VERY clearly feeling MUCH better!  I was so amazed at how much better.    He played and played- not wanting to be held or "needed" unless he needed a bottle, or a nap.   Sleep was easy and restful.  Saturday and Sunday were good.   Sunday night started to show some uneasiness and I noticed a little lip of granulation tissue reforming - so suspected his pain was starting to creep back in.  Or, was it because we were attempting to ramp back up his formula intakes?   My suspicions and instincts grow daily, as we move towards more healing from surgery and more clear patterns of when things are just not right....something is not right about the formula- but what is it?    It could be just the sugar content that his body just can't handle right now and in that case, we just need to find his balance and threshold.   But it could be an ingredient in the formula and since he threw up from it last weekend, we haven't been able to get more than 8oz in him and he has symptoms that are hard to deal with - his mood, crying and irrational behavior being the top of that list.   Those can be patterns of his chronic FPIES or from the sugar intolerance.   We just don't know yet.    The hard thing is that we will have to push him to know- we will have to go through some rougher days to get some better answers.