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
Showing posts with label DuPont Hospital. Show all posts
Showing posts with label DuPont Hospital. Show all posts
Friday, February 24, 2012
Tuesday, February 7, 2012
Some Theories but not Any Real Answers... Yet!
Sorry I'm just getting around to posting this! Last night, we came home and turned into ooze as soon as we sat on the couch.
So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.
He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)
First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.
The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.
The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.
I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.
So what's the plan?
First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.
If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.
With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.
We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.
Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.
Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.
She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.
All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.
Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.
~Stephanie
So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.
He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)
First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.
The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.
The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.
I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.
So what's the plan?
First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.
If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.
With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.
We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.
Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.
Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.
She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.
All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.
Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.
~Stephanie
Tuesday, January 31, 2012
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
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
Saturday, January 28, 2012
Settling In ....
This morning is the first morning that I felt like things are settling in. Last night Brandon and I squeezed onto a twin sized fold up bed and snuggled all night. It was the first night we've slept together at the same time and it felt amazing. Xander slept through the night peacefully as well.
It was sad saying "See ya later" to Brandon (I have a thing against Goodbyes) and for a little while after he left I felt like I was going to burst into tears at any moment. But I had little Xander to keep me busy.
This morning Xander fought hard to be perky. It wasn't his true perky self but you can tell that he wants to feel better so badly! He ate breakfast and then we snuggled and watched some movies (Toy Story 3 and Shrek.)
True to his hospital routine he fell asleep about 11:30. Dr. Swami came by right after Xander fell asleep and we discussed his progress. Some Cdiff is Flagyl resistant but since he is starting to show an improvement, Dr. Swami doesn't think we will have any issues with that.
After I spoke with Dr. Swami, I used naptime to take the opportunity to go down to the cafeteria. I've gained a sense of direction here.. FINALLY! Yesterday I was so overwhelmed with coming to the floor that I couldn't remember how to go to get to anything.
Xander's nap didn't last long though and he was very irritable for the rest of the afternoon. For lunch he would only eat saltine crackers and drink sprite.
We had a nutrition consult and she was rather stumped after listening to Xander's history. Right now we can't do much because the cdiff has muddied the waters so much. For now we are letting him eat what he wants (within reason) using small frequent meals. We are avoiding milk, soy and eggs again. Dr. Swami thinks that his tummy was so distended at admittance because of the eggs and pancakes he had the breakfast before (at the old hospital.) We are going to try to see if he will take Elecare Junior Vanilla. I'm not very hopeful but I'm willing to try! She said Elecare Jr. Vanilla is the best tasting one so we will start there tomorrow. He will still be on table foods but she is hoping to increase his caloric intake and get him some better rounded nutrition.
The nutritionist also spoke with me about a diagnostic complex issue team that she thinks we should see. Apparently, they are a group of doctors that are very good about taking strange pieces and figuring out the puzzle. We were originally supposed to be with that team, but they had a high number of patients the day that we were assigned our group so they chose Dr. Swami since he does infectious diseases and cdiff is one. The nutritionist was pleased that we are having a genetics consult on Monday. She said we will get back together and make a plan once cdiff gets better.
For dinner, Xander ate plain white rice. Then I gave him a bath and a massage with lavender lotion. I put him into a fresh gown and shortly after he fell asleep in my arms.
Another day down and we are headed in the right direction.
Thank you, Lord!
~Stephanie
PS: I'm planning on doing a question/answer post in the next few days. If you have a question, feel free to ask.
It was sad saying "See ya later" to Brandon (I have a thing against Goodbyes) and for a little while after he left I felt like I was going to burst into tears at any moment. But I had little Xander to keep me busy.
This morning Xander fought hard to be perky. It wasn't his true perky self but you can tell that he wants to feel better so badly! He ate breakfast and then we snuggled and watched some movies (Toy Story 3 and Shrek.)
True to his hospital routine he fell asleep about 11:30. Dr. Swami came by right after Xander fell asleep and we discussed his progress. Some Cdiff is Flagyl resistant but since he is starting to show an improvement, Dr. Swami doesn't think we will have any issues with that.
After I spoke with Dr. Swami, I used naptime to take the opportunity to go down to the cafeteria. I've gained a sense of direction here.. FINALLY! Yesterday I was so overwhelmed with coming to the floor that I couldn't remember how to go to get to anything.
Xander's nap didn't last long though and he was very irritable for the rest of the afternoon. For lunch he would only eat saltine crackers and drink sprite.
We had a nutrition consult and she was rather stumped after listening to Xander's history. Right now we can't do much because the cdiff has muddied the waters so much. For now we are letting him eat what he wants (within reason) using small frequent meals. We are avoiding milk, soy and eggs again. Dr. Swami thinks that his tummy was so distended at admittance because of the eggs and pancakes he had the breakfast before (at the old hospital.) We are going to try to see if he will take Elecare Junior Vanilla. I'm not very hopeful but I'm willing to try! She said Elecare Jr. Vanilla is the best tasting one so we will start there tomorrow. He will still be on table foods but she is hoping to increase his caloric intake and get him some better rounded nutrition.
The nutritionist also spoke with me about a diagnostic complex issue team that she thinks we should see. Apparently, they are a group of doctors that are very good about taking strange pieces and figuring out the puzzle. We were originally supposed to be with that team, but they had a high number of patients the day that we were assigned our group so they chose Dr. Swami since he does infectious diseases and cdiff is one. The nutritionist was pleased that we are having a genetics consult on Monday. She said we will get back together and make a plan once cdiff gets better.
For dinner, Xander ate plain white rice. Then I gave him a bath and a massage with lavender lotion. I put him into a fresh gown and shortly after he fell asleep in my arms.
Another day down and we are headed in the right direction.
Thank you, Lord!
~Stephanie
PS: I'm planning on doing a question/answer post in the next few days. If you have a question, feel free to ask.
Friday, January 27, 2012
Following Your Gut...
We got to our room about 10:30 this morning and things were a bit slow to get rolling. We, once again, lost Xander's iv line. Errr... but for now he is doing okay without it so they don't want to put it in. (It was a line that they used for blood work this morning, that they heplocked in case they needed it later, instead of re-sticking him.)
The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.
About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.
He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.
Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.
Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.
His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.
I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.
I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!
Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.
Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.
We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.
I'm off to snuggle with Brandon before he heads back to Virginia.
~Stephanie
The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.
About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.
He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.
Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.
Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.
His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.
I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.
I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!
Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.
Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.
We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.
I'm off to snuggle with Brandon before he heads back to Virginia.
~Stephanie
Discharged and Admitted...
We were discharged from the hospital in Richmond last night. The first paper I was asked to sign said that everything was resolved. I refused to sign that.
So they discharged him with a paper saying that he still has failure to thrive, diarrhea and dehydration. We asked for a transfer to a Children's Hospital outside of Richmond. We were told the only place they could transfer us to would be UVA. UVA is a teaching hospital that is not a pediatric specialty facility. It is one hour away. Our requests to be transfer to a pediatric specialty hospital were denied.
I was flabbergasted.
Xander was obviously still in great discomfort and his diarrhea had begun again. Brandon and I prayed and decided to drive to Wilmington, Delaware to have Xander seen by DuPont Children's. We handcarried all the records we had and his adoption paperwork.
The triage nurse just couldn't believe what we'd been through. We got a room within an hour and the nurse took all my papers and made copies. She took a thorough medical history and examined Xander thoroughly.
Shortly after the ER doc came in puzzled. We explained our frustration, the inconsistencies in the records we had, and how he was still in pain. Xander was barely drinking pedialyte and his stomach was very, very distended. He also continued having very smelly wet burps.
We did a belly xray and we were told that it was abnormal. He was very full of something. Guesses were food and stool and his stomach was enlarged greatly.
Some of the lab results we carried here were just wonky.
We were told we were being admitted to regular peds and that a team that does hard cases would try to put together all of our pieces and we would consult with the specialties.
And then a stool sample came back positive for C. Diff and blood. So we are now on the gastro unit in an isolation room. Xander is not permitted to leave the room and everyone that comes in puts on gowns, gloves and a mask.
Everyone here has been amazingly gentle and kind to us. The nurse that told us about the C. Diff says that her gut says there is more going on than just that but that we have to start to peel back the layers of the onion.
We are obviously greatly disturbed by this news. We are struggling greatly with disbelief, anger and sadness but at the same time feel relief that we are finally where someone will help us.
Thank you for your prayers. We feel like prayers and God's goodness have gotten us here.
~Stephanie
So they discharged him with a paper saying that he still has failure to thrive, diarrhea and dehydration. We asked for a transfer to a Children's Hospital outside of Richmond. We were told the only place they could transfer us to would be UVA. UVA is a teaching hospital that is not a pediatric specialty facility. It is one hour away. Our requests to be transfer to a pediatric specialty hospital were denied.
I was flabbergasted.
Xander was obviously still in great discomfort and his diarrhea had begun again. Brandon and I prayed and decided to drive to Wilmington, Delaware to have Xander seen by DuPont Children's. We handcarried all the records we had and his adoption paperwork.
The triage nurse just couldn't believe what we'd been through. We got a room within an hour and the nurse took all my papers and made copies. She took a thorough medical history and examined Xander thoroughly.
Shortly after the ER doc came in puzzled. We explained our frustration, the inconsistencies in the records we had, and how he was still in pain. Xander was barely drinking pedialyte and his stomach was very, very distended. He also continued having very smelly wet burps.
We did a belly xray and we were told that it was abnormal. He was very full of something. Guesses were food and stool and his stomach was enlarged greatly.
Some of the lab results we carried here were just wonky.
We were told we were being admitted to regular peds and that a team that does hard cases would try to put together all of our pieces and we would consult with the specialties.
And then a stool sample came back positive for C. Diff and blood. So we are now on the gastro unit in an isolation room. Xander is not permitted to leave the room and everyone that comes in puts on gowns, gloves and a mask.
Everyone here has been amazingly gentle and kind to us. The nurse that told us about the C. Diff says that her gut says there is more going on than just that but that we have to start to peel back the layers of the onion.
We are obviously greatly disturbed by this news. We are struggling greatly with disbelief, anger and sadness but at the same time feel relief that we are finally where someone will help us.
Thank you for your prayers. We feel like prayers and God's goodness have gotten us here.
~Stephanie
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