Waiting with Baited Breath

I've been quiet on the blog because I've been crazy busy. The children are growing in leaps and bounds, the weather has been beautiful, Xander has had normal diapers and I've been off bedrest!

Things have been pretty amazing. I still haven't felt Isaiah but each Monday when I go in for the 17-P injection, my sweet nurse gives me a listen to his heartbeat. It keeps me sane until the next week. Sort of.

Xander completed his 21 days of antibiotics, started his probiotics and then we started to wait and watch. It is the worst feeling in the world to wait and see if your sweet boy starts having issues again. We documented a little over a pound weight gain while he was on the antibiotics. Right before our very eyes we watched his cheeks fill out, a leg roll appear and his arms fill out. I'm terrified of going backwards.

And yet, this morning, it appears that we may be starting that downhill slide. I want to stay on the mountaintop! Last night we had roast, baked carrots and homemade fries (our timing was off and we needed something fast for our potatoes.) He had done the homemade fries with no issues so the only new thing was the carrots.

We had an issue with carrots when he first came off of the elemental formula, but our nutritionist and new gastroenterologist threw out his reaction to carrots. But now this is twice... or is it just the beginning of constant diarrhea again?

I hate that nothing is clear cut. I hate that nothing seems to be A, B, C. And yet, as much as I hate what we are going through, there is nothing that I can really do about it except comfort Xander when he is upset, try to keep going and pray like crazy.

The last time we spoke with the gastroenterologist he said that if the diarrhea continued after this past round of antibiotics we'd be looking at doing some more scoping. But even that doesn't guarantee we will know anything.

Part of me hopes it is carrots, but then I wonder: Why he is having so many allergy/intolerance issues?

*sigh*

~Stephanie

Round Two: Ding, ding!

Today I got the run around from the lab and our doctor's office. It was a giant mess of tangled knots and I was pretty sure at one point I was being "Punk'd" or being taped for Candid Camera. If only people could actually listen to what is being said.

I don't have the energy to rehash the craziness that I went through.

Anyway, it all boils down to the fact that we FINALLY got to speak with our doctor. The lab results are not going to be done until Monday (another long story) but due to Xander's history and the fact that he recently had cdiff and is showing symptoms of it again, we are treating it.

The other possibility is that he has SIBO (Small Intestine Bacterial Overgrowth) but the treatment is the same: Flagyl (an antibiotic) for three weeks this time.

If he shows improvement over the weekend, we know that it is one of those two. If he shows no improvement then it is something else (barring an inappropriately handled sample or the test being performed incorrectly.)

Once he does 16 days of the antibiotic we will add a probiotic to try to get the bacteria in his GI tract in a better balance. He would remain on the probiotic twice a day for at least 4 weeks. The doctor gave me the name of a product he recommended, but after looking it up, it contains lactose and the label says that it possibly contains soy. We will obviously need an alternative to that. *sigh* It just never ends.

If the test results come back on Monday and say that it was cdiff negative, then we are more likely to have SIBO. If symptoms reoccur in the future, with negative cdiff testing, we will have to look into WHY he gets the overgrowth. That would come via endoscopy.

So we are slightly closer to a possibility of an answer, but it will continue to be a slow going thing.

We did ask our doctor (again) about being around other children, since Xander was in the nursery at church this past Sunday and we have three other children. Our gastroenterologist says that cdiff is spread through fecal-oral transmission. Meaning, washing hands after diaper changes are of utmost importance and of course washing your hands before meals is also of importance. I'm a little OCD about washing my hands so although I have no spleen (and therefore am technically considered immune compromised) I have not contracted cdiff and neither have any of our children (who are constantly around Xander.)

But we will keep him away from church until his symptoms improve, just in case. I just didn't want anyone thinking we are out contaminating places or knowingly putting other children at risk. We would never knowingly do that. I mean, we are the same people that stay home from church if one of our children has a runny nose.

Pray we see improvement over the weekend. While it may mean a long road, at least we would KNOW what we are fighting.

~Stephanie

Moving Targets, Changing Rules, and a Frustrated Mama

It's 1:30 am, and I'm wide awake. I feel asleep a little after 9 mentally drained and now I can't turn my brain off.

Two days ago, we did a weight check for Xander so I reported it to the nutritionist at DuPont along with the foods we've been able to add back in.

And somehow in less than 10 days our targets moved. See, it is perfectly alright for DuPont to discharge him on only pedialyte, apples, plain white rice, bananas and saltine crackers. At our last appointment we were told we had to get him off of pedialyte and while coconut milk wasn't her first choice (soy was) that she would be happy as long as he is off of pedialyte. She even suggested that we flavor it with syrups.

Insert, the moving target. Coconut milk was frowned upon when I reported it back. Instead I was sung the praises of soy. Nothing else was acknowledged.

Anyone remember why we can't try soy?

Oh that is right! We have an intolerance issue and besides he won't touch the stuff with a 10 foot pole these days. He also won't touch rice milk, or formula or a thousand different foods.

Supposedly this nutritionist also works with the allergy clinic, but she can't seem to understand that Xander has a real problem with soy.

So I responded with a heavily edited return email. Yes, I actually took the time to take out the sarcasm, frustration and emotion from the letter and reminded her that we have issues with soy, that we are confused because at the last appointment she stressed the need to get him off of pedialyte and told her we were frustrated that we aren't getting more encouragement since nothing was addressed other than the coconut milk.

That email was sent on Wednesday afternoon and I've yet to receive one in return.

Sigh... just another letdown from the medical community.

Let's talk changing rules. Xander changes what he will actually eat from day to day, but cannot effectively communicate this to me. He communicates but unfortunately, no matter how long he does it, screeching, screaming, crying and flailing about just is impossible for me to decipher. One day chicken is fine, the next day he won't touch it. One day rice is fine, three days later he won't touch it.

But he has halted on trying new foods as well. So the foods that have been our standby in the hospital and at home are now touch and go. And somehow I'm supposed to watch this, live through it and be okay with it.

Not happening.

So instead we get a frustrated mama. A mama that cries bucketfuls of tears. And yet, STILL, no one will help us.

Tonight in a moment of desperation, Brandon called the on call for our gastro at DuPont. We were told that if he won't eat or drink that we should take him to the ER. Brandon explained that Xander is not dehydrated and he was discharged like this (actually in worse condition.)

And somehow, the gastro on call couldn't get it through her thick head that no matter how many thousands of dollars in medical bills we have, and how many ER's we go to, NOTHING ever seems to change. We NEVER get answers. In fact, every time anyone medical does anything, he ends up WORSE than when we started.

Her advice? If you think he needs seen now, go to the ER.

Nice.. another broken record.

So now, our gastro is supposed to call us in the morning. I don't know what he intends to do or what he will say. Afterall, EVERY expectation or goal or whatever set by these people changes without our knowledge and yet NOTHING continues to be done.

And I can't get anyone to understand that we are NOT okay with that.

NOT, NOT, NOT.

I refuse to believe that we are the only parents out there that are upset that we can't find help for our son.

Raw Emotions...

I'm struggling.. a lot.

I feel like I'm a bundle of raw emotion. Fear, frustration, anger, impatience all swirl around inside of me each and every day.

Many of you have read on Facebook that we are at home, again.

No, Xander is not better eating wise. In fact, a reasonable argument could be made that he is actually in a worse condition than before.

We are continuing his antibiotic for the C.diff. He is still only drinking pedialyte and will only eat applesauce, rice and bananas with an occasional pretzel or saltine cracker. This is the same thing he ate for days in the hospital. And somehow this is considered a plan.

I'm not happy that we lost ALL the foods he would eat during this last hospital stay.
I'm not happy that this is considered suitable to the attending to come home eating only these things.
I'm not happy that our gastroenterology consult never took place while we were inpatient.
I'm not happy that my conversation with the nutritionist ended today with her sighing and saying "Perhaps we will have to just do a nasal gastric tube."

I want to scream loudly that I don't want another bandaid. I want my baby to be better. I want the ROOT of the issue to be found. I want him to have normalcy and be able to eat whatever his little heart desires.

And I don't have any of that.

Only one expectation that was set for our stay at DuPont was met. He was treated for C. Diff.

We never met with the complex cases team. Yesterday when we left we were told that appointment would be Monday after gastro. Today we were told it is in March.

This coming Monday, we are returning to DuPont hesitatingly to see the gastro department and then nutrition. I fasted during breakfast and lunch today, praying for God to help me. Somehow I have to muster the strength to deal with people that have left us in a worse situation than before food-wise and people that refused to see us as inpatients.

Lord, give me tact and supernatural ability to deal with this on Monday.

Please pray.

~Stephanie

Frustration Beyond Measure...

This will be a recap, because quite frankly I'm also exhausted beyond measure.

I left the blog off with preparing for Xander's allergist appt last Wednesday. We went and she discharged us as patients and felt that NOTHING he was experiencing was allergy related.

Brandon and I sat in the parking lot stunned. I remember turning to him and saying, "Did that just really happen? Just she just say that there is nothing she can do?"

And he shook his head yes, still too flabbergasted to make a sound.

She had told us that everything was GI related and that we needed to be seen within 2 weeks by our gastroenterologist and that we needed to go ahead and schedule the colonoscopy. Xander lost a half a pound.

So we called the gastroenterologist's office and they said we could have an appt in 3.5 weeks. We shared how the allergist he sent us to said we needed seen in 2 weeks and that he was losing weight. They said there was nothing that could be done. So we asked to speak to the doctor. She said she would ask him to call.

And we waited all night. Nothing.

Thursday, we called back. We pushed to schedule the colonoscopy. We pushed to see the doctor. We called our primary care doctor for advice. His office told us to go back to the gastroenterologist. We said that we had tried that. We said that he was losing weight.. and asked what to do. We were told repeatedly to go back to the gastroenterologist.

Finally on Thursday, the gastroenterologist's office called and said that the doctor was changing Xander's formula to a ready to feed formula and to come get a sample. We arranged to pick it up the next morning.

Friday morning, Brandon went to pick up the formula and it was Alimentum infant formula. Xander is 2.5 YEARS old! Brandon reminded the office of his age. They brushed him off. Brandon reminded them that Xander has an issue with soy and it contains soy oil. The doctor refused to come out of his study to speak with Brandon.

At my wit's end, I paged a local dietitian friend of a friend. I told her the whole story. She agreed that Alimentum was not nutritionally appropriate for Xander at 2.5 years old. She told me to stomp my mama boots loudly and encouraged me to seek a second opinion for a gastroenterologist.

I called a large practice here, and got an appointment.. in April.

I called the allergist's office and asked for a referral to a new gastroenterologist since the lady that scheduled us said that it could help us get the appt moved up. The front desk lady at the allergist's office, said she would call me right back. She called the gastroenterologist's office and tattled on me wanting a second opinion. Next thing I knew, I had the gastroenterology office calling and asking if I had questions. I asked to speak to the doctor or have him call me back. They said that wasn't possible. I said it was all ridiculous and hung up.

I called the allergist's office and asked to have medical records prepared. The front desk lady was nice until she asked the patient's name. She told me she had called the gastroenterologist's office. I told her that I didn't ask for her to tattle and I just needed his records.

She told me all about the conversation Brandon had with the office gastroenterology office that morning. And she also said that the doctor would have to approve my records to be sent and that they would not be ready on Monday as we had arranged before I revealed which patient I was calling about. I was appalled.

We headed to Georgia to take the three children to my aunt's for a little break from the craziness. Solomon had become very clingy with all of Xander's screaming and Julianne was a constant puddle of tears. The mental health of our family was suddenly very shaky.

The gastroenterologist finally called on Friday night. He said the Alimentum formula was a miscommunication. Brandon said that if he wouldn't play the telephone message game with us and would speak with us directly that we wouldn't have this issue. Brandon said that we felt like he didn't care about Xander and really dropped the ball. He assured us that he really did care for his patients. He told us to continue the Neocate Junior Formula and to add a new food every 5 days to test foods. We asked what to do when he stopped drinking since his intake had already taken a hit and he said he was on call that weekend.

We continued to Georgia. We arrived at my aunt's. Xander screamed and held his belly and wouldn't go to sleep. He also quit drinking about 8 pm that night. So we went to MCG Emergency Room. He was xrayed and had an ultrasound to rule out intussusception. They did not find that, but what they did find shocked us. After over 2 years of diarrhea, he was constipated. They felt the diarrhea was going around the constipation. The muscle that pushes food through the intestines was going very slowly. They said that could be a side effect of the constipation or the cause. They put him on miralax-- a laxative. He finally fell asleep about 7 am.. after being awake for 22 hours.

We were cleared to drive back to Virginia, so we did. On the way, Xander still would not drink and cried often. We paged our gastroenterologist twice. We received no phone calls in return. We arrived home about 10 pm on Saturday night. He still had not had anything to drink. We checked our pedialyte and it has citric acid in it. Knowing his past reaction (severe diarrhea, bleeding bottom, screaming, scratching) and afraid to make things even worse, we put him to bed.

He slept until 4 pm. We checked him often but he was simply exhausted. When we woke him, his diaper was dry. Dry after all that time!!

We took him to a pediatric urgent care center. He was very dry and it took three tries to get an IV started. After Brandon explained the situation, the practitioner said she would remain professional but that she was not surprised about our issues with our gastroenterologist. They also tested him for RSV because he was very congested. That came back negative but they did a breathing treatment.

They called St. Mary's and arranged for Xander to be admitted directly to the pediatric floor. And we've been here since Sunday night.

Monday we were supposed to have a gastroenterologist consultation with a new to us gastroenterologist and the gastro never came. (what is with these gastros anyway!?!) The attending doctor put Xander on a regular diet (excluding soy, milk and egg) and Xander drank plenty of pedialyte.

We also had blood drawn for a thyroid panel, attempted to do a sweat test for cystic fibrosis, had a stool test done, and an echocardiogram for a murmur that was found (even when he was finally hydrated.) The echocardiogram came back normal. Part of the stool tests have come back normal and we are waiting on the others. The sweat test wasn't able to be done because he didn't sweat enough. The thyroid panel came back with elevated TSH. We have an endocrine consult tomorrow.

When the gastroenterologist did come, he tapped on Xander's belly and pushed on it. And then proceeded to tell me that he felt whatever the problem was that it was acute and had passed. Xander has had diarrhea for TWO YEARS. Xander has only had diarrhea in the hospital once (which is not abnormal when we make changes for Xander. He regulates for a little while and then it is back!) He will not to any additional tests, other than the one mentioned above. He said that he doesn't even think we need a colonoscopy. He told me that this is ALL allergic in nature and not a gastro problem. I reminded him our allergist released us last Wednesday. He shrugged. I asked him what he thought the past problem was and he said he couldn't say.

And then he walked out.

I sent Brandon a text at work and he called. I told him everything that happened. And then I laid on my cot here and cried. Xander's wonderful nurse walked in to check on him and found me upset. She really went to bat for us.

The attending said that if Xander would drink either formula or rice milk that we could be released. (However, the dietician I spoke with here at the hospital says that rice milk isn't enough fat or protein and the previous dietician friend of a friend I spoke with said the same thing.) But Xander will only drink pedialyte right now. According to her, everything else can be treated outpatient but he cannot go home on pedialyte.

Tonight we tried from 4-10pm to only offer him formula and he would not drink any significant amount. We tried new cups and the nurse tried bribing him with a matchbox car. All of that effort got us MAYBE 1 ounce in him. The attending finally okayed pedialyte again to prevent needing another iv placed (yet again, an amazing nurse went to bat for him.)

I'm beyond frustrated. I feel like everyone is playing hot potato with us and passing us around the various specialties. We spoke with a patient advocate and told her the same thing.

Please pray. Pray for Brandon and I to make our issues with Xander's care clear. Pray for endurance. We are both weary.

~Stephanie

FPIES: Food Protein Intolerance Enterocolitis Syndrome

Our allergist has been very good about keeping in touch with us this weekend. I think a um.. harsh, blunt conversation with a certain Papa Bear let her know just how disappointed we were that we were left hanging on Friday. I can't say I blame him. I was near hysterics. *blush*

Anyway, so we spoke with Dr. G yesterday (Saturday) and discussed Xander's status. He was still having diarrhea and had almost quit drinking on us. By 3pm, I had only gotten him to drink 9 ounces of his formula. According to the doctor, he needs 48 ounces to grow. (I know that before I said 32, but that was a miscalculation based on him still supplementing some from food, which he is not.)

He was still screaming and sucking his thumb violently.

So we asked her if this is still considered Multiple Food Protein Intolerance. She said that she had changed his diagnosis to Food Protein Intolerance Enterocolitis Syndrome (FPIES) when she went back through his charts. He has displayed low blood pressure over and over and while he doesn't have the violent vomiting that occurs commonly with FPIES, he does have the diarrhea component. Our allergist does believe that what we thought was occasional reflux was actually vomiting since all of his reflux testing that the gastroenterologist did came back negative. He hasn't done that at all since being on the elemental formula.

We are to follow up with her and the gastroenterologist.

So what does that mean for us? Well, so far not much. There is a possibility that he could go into shock after a vomiting/diarrhea episode and we'll be careful to look for that. Again, she has told us that because he is being diagnosed when he is older than a "typical" FPIES patient that this may be a long term thing for him. (This child was diagnosed as a toddler and only has 5 safe foods.)

I networked with some other allergy/gastro moms and they have all highly encouraged us to go to one of the top specialists in the country-- especially since he is now limited as to what elemental formulas he can have and he still has zero safe foods. Apparently Cincinnati Children's, Boston Children's and Children's Hospital of Philadelphia all have highly respected programs. But it could be months before we can get in.

Do you have goosebumps yet? Annalise was going to be followed by Children's Hospital of Philadelphia.

Hearing the hospital's name brought me instant peace. It was as if my mind said "Oh yeah...this isn't a surprise for God! Annalise was not a mistake for our family. It didn't work out the way we thought it would but crossing paths with her had meaning and there was a divine reason that we did."

So we just keep going. He's still our Xander even when he isn't feeling 100%. (I don't know if he is feeling better today yet because he is still sleeping. I haven't woken him for church.) We love him and will do whatever it takes to help him. We vowed that 2.5 years ago and that hasn't changed. We don't know where we will end up with him, but then we don't know that about any of our other children either.

But we know and love the One Who does.

Off to get ready for worship,

Stephanie

Endoscopy Adventures

My Silly Man in the Waiting Room

Praying and Singing... it was just me and him in our own little world.

This past Monday, Xander had an endoscopy done as an outpatient procedure. We woke up bright and early and loaded him into the van. We allowed him to wear his footie pajamas and as I looked in the backseat with only one child, he seemed like such a big boy.

Goodness, I can close my eyes and still remember every detail around his arrival. Every smell, the sounds, what else was going on in our lives. Has it really been 2.5 years? I remember what his skin felt like, unwrapping him and studying every millimeter of his body.

And I'll always remember the day that I walked into the nursery and he heard my voice and went ballistic as I was scrubbing in. He cried hysterically until I got everything settled and picked him up. He knew we belonged together after just a few days of us visiting and caring for him. I rocked him and cried and cried. It was our moment, where I feel that he recognized me as his forever mama.

I was really nervous about the procedure and hadn't sleep well. But with God's help, I held it together. He was not happy about not being able to eat or drink. He has a serious coconut milk/sippy cup habit.

He was a bit of a handful and didn't like waiting but before we knew it, they walked away with our oldest son. And it didn't bother him a bit!

We sat in the waiting room and tried to watch TV but the only thing that I was successful at watching was the clock.

Soon, we were called back and walked into the recovery area. He was sleeping peacefully and I had time once again to take every bit of him in. His eyelashes slay me.

Dr. V came and showed us pictures he had taken. He felt there was some inflammation and found a mass in his stomach that he said looked like misplaced pancreatic tissue. He wasn't overly concerned about that though. He said we'd get the biopsies back by Friday.

Then came the task of waking my sleeping prince. He was perfectly still and snoozing away. But the nurse started to worry that he wasn't waking up and it made me panic. I was rubbing and kissing and talking to him with no response. Every minute that went by made me panic more and soon after, I stuck my cold hand down the back of his flannel sleeper... and he started to stir.

I hope I don't sound like a bad mama when I say this.. but I've never been happier to see a sleeping child wake up before in my life. :)

The nurse was concerned about his low blood pressure so she looked at his chart to compare it to his intake blood pressure and it was about the same and we were on our way.

We were advised to keep him laying or sitting all day, but I'm pretty sure they had no clue how active he is. He was rather dizzy and lacked balance so we watched him carefully and when he became whiny, we put him down for a morning nap. When he woke up, he appeared to feel much better and the rest of the day seemed quite normal.

Yesterday, Wednesday, we got the results of those biospies. When Brandon answered the phone, the color drained from his face and he asked me to walk to the bedroom. My heart pounded a zillion beats in those few steps.

Turns out the doctor had asked to speak with both of us together via speakerphone. Brandon had no idea why and feared the worst. Dr. V let us know that all the pathology came back normal and didn't even show inflammation. The mass he saw was not misplaced pancreatic tissue but was typical gastric tissue.

Basically, even after all that, we still have no idea why he has chronic diarrhea.

So what is the gameplan?

Well... we are to keep the allergist appointment on Wednesday. If she finds nothing (which we have totally been warned may happen.. even with his known food allergies, then we go back to the gastroenterologist. We are supposed to leave his diet the same unless the allergist tells us otherwise.

We will see the doctor in 6 weeks for another clinic visit. We'll check weight and height and if there are continued issues we'll discuss a colonoscopy to check for colitis or doing an endoscopic ultrasound on the mass in his stomach to see if that could cause the diarrhea.

Basically, another wait and see type thing. There is a also possibility that we will find nothing and that Xander has what is known as toddler diarrhea (similar to IBS in adults.)

As I share this news, I have to wonder if God has used the diarrhea to get us to the gastroenterolgoist which noticed the cafe au lait spots so Dr. V would ask questions about his cafe au lait birthmarks with the end result being a referral for a neurofibromatosis screening. I've never forgotten that God can do anything and can use anyone.

I also wonder if God is using us to spread the word about adoption. ;) We've gotten quite a few questions about adoption in general.

We see the allergist on the 21st and she came highly recommended by our gastroenterologist and several of our friends from church.

We appreciate your prayers as we desperately seek answers to help our son. They mean the world to us and quite honestly those prayers are the glue that keeps me together on some days.

Glued,

~Stephanie