I hate waiting.
We are still waiting to hear the results of James’ biopsy. I want to leave my house and not fear it’ll take days to get a reply back for any questions I have for the Dr.
I just know they will call Friday when I’m at the Drs. it’s bound to happen.
Add comment March 24th, 2010
After over a week of being sick, eventually getting on antibiotics and feeling a bit better James had his endoscopy.
While we had hiccups along the way with getting up late, trying to get James to drink something in the 15 mins he had to be able to before he was cut off for the next 7 1/2 hours (when he got out of procedure/recovery). The GPS was acting crazy and took us a a few miles out of our way - note to self to let it boot before getting on highways. My shoe breaking at the gas station about 45 mins from the hospital. Luckily a Walmart was across the highway from the gas station. James screamed milk, milk, MILK! several times and asked to eat but thankfully when we got to the hospital he was stimulated enough (Word World on the DVD wasn’t enough I guess) to not ask again.
We did arrive and were lead to his room. We were greeted by a hospital crib and I think both James (daddy) and I got a bit tight throat-ed. We got settled, checked in and played for about an hour in the playroom. They checked us in and took his vitals (not a fan of the blood pressure cuff at all). He did lose 1 1/2 lbs since the Dr saw him in January. He’s now just 29lbs 4oz - not sure if it fell over the last week of being sick and not really eating or if it’s been the course of the last few months of not eating the best.
About 20 minutes before he was supposed to go in we went back to his room and changed him into his hospital gown/pant. He was not very interested in this process and cried out for his ‘drums’ (he had a shirt on with drums on the front). We watched TV and waited for the DR and Anesthesiologist to come in - the nurse updated us saying she was running a bit behind, it wouldn’t be long.
The Anesthesiologist talked to us, told us what to expect, said one of us could go back. The Dr came in, told us what was going to happen, the risks and what would happen if those things happened (bleeding internally too much from the biopsy removal, puncture of his tract - antibiotics/surgery to repair) and we were off in a matter of minutes after that.
I went with James to be there for him while they did the gas. It was a crazy long walk-the nurse and anesthesiologist tried to make James at ease as they walked, talking to him about his Lightening McQueen and Doc Hudson cars he had with him. We eventually reached the surgery room and he lit up at the 10 TVs around the room. They sat him on my lap and we laid him down to prepare for the mask, but the Dr was running a few minutes behind us (scrubbing perhaps, not sure) So, they played around while waiting for the Dr to arrive with the scope, making silly faces and spinning him and I upside down on the big TVs around room as he was getting a bit antsy being confined.
Eventually he grew more irritated and they decided to put him under then. He did really well, all things considered. I wasn’t really prepared for the squirming that happened and the image of him struggling - you know how your mind plays tricks on you - I started to tear and finally someone said that it was normal, that he was OK and that it was just like it should go. Another 30 seconds passed and he was out.
The nurse walked be back to James’ room where James and Evelyn were waiting. We hadn’t eaten and it was already after 10am, we’d been up since 5am. So we walked to the little cafe inside the building and got something to drink & eat. They gave us a buzzer in case the DR was finished to talk to us before we got back. We sat in the general waiting area at a table and ate, I updated Facebook. Eventually we went back to his room, so the Dr wouldn’t have to worry about paging us.
We were back in the room maybe 5 minutes when the DR came in. She said everything went well and she’d been done about 10 minutes already. She showed us images she’d captured and explained that while there wasn’t any visual sign on these, the pathology on the biopsy’s were going to be the important part to show celiac, allergies, ect.
The bipsoy will show determine this;
Healthy Villi (line your intestines) or damaged (from celiac or something else)
Around 10 more minutes passed and the anesthesiologist walked by our room, said James was doing OK - it was a walk by ‘doing OK’, around 5 more minutes passed and they came to get James to go see James - we couldn’t all go as Evelyn wasn’t allowed in the recovery room.
From what James said, James was very upset when he walked in the room. He wanted EVERYTHING off - the finger monitor, the heart monitor, the IV, everything. He was pretty much done with everything, and eventually they took of everything but the IV - he wasn’t interested in the Lightning McQueen Daddy had for him, nothing. He just wanted off.
We had expected that James & I would switch at some point while James recovered in the other room but about 15 minutes after James went back to see James, they walked into the room - IV still in and either he’d calmed for a bit and then remembered his IV or he never calmed in the first place because it took all of my strength to hold and some of Daddy’s too James down and away from pulling out his IV when he got the room.
I held him and we offered him water (he had to drink before he could lose the IV) - we offered him snacks, we turned on the TV - after about 5 minutes he did calm down enough - not sure what was the magic combination of event but he did. Oh! I remember - Daddy offered him his soda - and he drank that twice when we asked for juice from the nurse and he then drank that, and gobbled down gluten free puffs and wafers.
Eventually we were just waiting for the anesthesiologist to release James. This time James instead of wanting to wear his drums to get changed, wanted nothing but to eat and watch TV in his hospital clothes 
We were cleared and headed out, I spotted an Uno’s on our way in, as by this time it was 12:30pm and Uno’s has gluten free foods available for James. So we headed towards home and stopped on the outskirts of the town to eat. James did OK, he ate the breading but held onto the cheese in his mouth which eventually we had to pull over to get rid of (lately he’s been keeping food in his mouth and then getting rid of it after persuasion into a napkin which usually results in vomit/choking type issue also). But they got balloons while we were waiting, and they were a distraction. He did eat a container of puffs and two wafers while we waited - so really it was good for him.
We headed on home. Dinner was a success.
James seems to have developed a ‘black eye’ after the procedure.
James was doing so well, we took a short walk in the neighborhood after supper and then treated them to ice cream, where we learnt that James doesn’t like hot fudge! 
James didn’t seem to have any troubles as far as pain from the procedure (sore throat, ect).
He ate well for breakfast and lunch yesterday but at dinner we were back to storing food and spitting it out with the vomit/choking issue.
We should hear the results of his biopsy next week.
1 comment March 19th, 2010
So J has a fever today - hoping it goes away with his nap, but he’s coughing I can hear and isn’t sleeping well at all. 
I can to the realization today that - I bet James knew all along - that we have to pay for J do have his procedure and I”m just so drained from everything else going on I am just negative. While we don’t pay the full price of it, we do have to pay a %, upto our deductible for the year on his bills - and ours too for this type of thing - like when we had J&E we had to pay our full limit deductible….. It slipped my mind in every way possible and I’m just deflated at the thought of having to find and fork over a large sum of money for them to look and take parts of his body.
But if we figure out or are a step closer to knowing what’s up, because something is.. then I guess it’s worth it. We’ll be pushing ot get further testing done THIS year though, if it isn’t and is needed, if it’s going to result in more deductibles. Blech!
I am just reaching the end of my ropes and I am worried about him and what if something goes wrong, what if he gets sick from the anesthesia, what if they rip a hole in him…. what if this doesn’t give us an answer. What if he doesn’t get better when he’s off wheat/gluten and we are going thru this longer.
I’m discouraged or frustrated or both that the pattern just isn’t being put together by someone.
James has days leading up to his ‘flare up’ that he stops eating.
He has a flare up, lasting several days, followed by little to no eating.
His joints ache.
He sucks his food, and has in the last few months started to spit it out instead of eat it. He this last week or so has started vomiting it out as he tries to get rid of it.
He pees more than he drinks in, when he’s on wheat.
He hasn’t gained any weight in 3 months.
I know what ever is going on isn’t right - and that’s why we’ve been persistent in getting it figured out, even if it’s taken longer than I really rather have liked. I am just not a fan of all this.
Regardless of the results, he’s going on wheat & gluten free foods starting the 18th…
1 comment March 11th, 2010
James’ pre-op went well today, which was good. We were worried as my previous post talks about - we are feeling the strain of all this.
He has some sniffles but doesn’t seem to be wheezing or congested and that’s their concern for putting him under. So this next week will be me loco with keeping him healthy.
The next step will be a phone call the day before the procedure to tell us when to be at the hospital - hope for a good time - since we have to travel almost 2 hours to the hospital and we’ll have to be there early no doubt.
I am guessing that will be a very long day.
Add comment March 10th, 2010
We’ve had a bad weekend into the week with J, and both James and I agree that we can’t keep this up much longer. Perhaps it is because E was sick at the same time and we were both stressed about the idea that the surgery wouldn’t proceed (he has his pre-op tomorrow and he has to be well then (and obviously on surgery day) . Perhaps it’s because J had a really rough few days and I feel angry about not being listened to about him - reflecting back on visits. I do know what I am talking about and there is something not right with J.
I talked to James on his lunch hour and typed the words while crying, J had another digestion issue. He woke up ice cold and pale. His temp, 96.4. Got him some milk and covered him in a blanket. Debating to take him to the Dr (call the nurse) because at the same time E had finally dipped below 100 of her 103 temp the night before. I didn’t want to ruin things for Wednesday and was sure if we went - probably would.
I started googling things, to try to figure it out. All I could resonate was how little he ate the prior two days -and how little he drank the day before too. (his pattern when he’s having bad digestion times). James suggested apple juice, but we weren’t sure would he just bring that all back up but as he didn’t get better I gave it to him.
Thankfully in an hour’s time he was back to himself mostly. He still acts odd when he’s in his bad digestion place - and sure enough a little while later he’s gone bathroom and it results in a mess that sends me to tears.
Perhaps I feel helpless as I/we need to keep poisoning our child - which I get but it feels so wrong at the same time. Perhaps it’s because few people seem to ‘get it’ and it’s so difficult to understand even when we read about it. Many offer nothing but the most support humanly possible.
Later in the day - we have the usual joint pain which has seemed to be sloughed off as a symptom by any Dr. I’ve told it to. I don’t know if Celiac is the answer to what is up, but something…. something is 100% not right. I only hope if it isn’t Celiac that we are able to correct it by going wheat free 100% (which is essentially gluten free because well wheat is the biggest offender and as I wrote before there are few items out there when we needed them that were wheat free but not gluten free). Because the thought of more tests and doctors and experimental taking off and on food I’m just not up for today.
In the long run, J will be better off diagnosed. But he’s 2 1/2 and should be being a kid and on the days of his ‘flare ups’ he’s not even close to that.
I joined a group several months back on Facebook - which is where I spend most my free time during the day-yes I’m an addict. The Celiac Handbook. Most the people we’ve talked to seem perplexed by the idea that someone could have both wheat allergy & celaic, in fact the Dr J sees nurse said they’ve never seen a case in all her time working there.
So for anyone interested in what this might mean for J.
What is Celiac?
Celiac Disease is an autoimmune disorder ( an overactive immune response of the body against substances and tissues) of the small intestine.
Celiac Disease is caused by the inflammatory interaction of gliadin and the enzyme tissue transglutaminase. This inflammation flattens the lining of the small intestine and thus impedes your small intestine’s ability to absorb nutrients. The best and likely only way to deal with this disease is a strict gluten-free diet.
What is gluten?
They exist in the grass-like grains wheat, barley, rye and spelt.
What is the difference wheat allergy/gluten intolerance (celiac)?
In most cases, celiac will be systemic and result after consuming gluten after a period of time. Symptoms of wheat allergy will instead be more like a reaction to a peanut allergy (hives/rash, ect) and be per instance of contact/consumption.
As an example. J has toast for breakfast, his breaks out in a rash (wheat allergy). He continues to eat toast for the next 4 days - each day getting a rash. On the 5th day he has a digestion issue (celiac).
The main thing the Drs keep repeating to us is about J growing (on his own curve) just fine and how that’s an indicator in children- He’s still smaller than most kids his age but has grown consistently since he was a few months old . I guess we’ll hopefully find out in a week.
I really, we really, really want J to just be 2 1/2. Not unwell all the time.
Add comment March 9th, 2010