Updates!

Thursday, I went to my OB appointment. We had a scare with the heartbeat and the first nurse could not find baby's heartbeats and left us alone in the exam room.

I started crying. Brandon was rubbing my hair and trying to reassure me about "those crazy machines" when the second nurse walk in.

She walked in and said "Oh let's find this wiggleworm!" And when she came around, she noticed I was crying. I don't hide crying well. My face gets splotchy red and my eyes swell up. (I have a certain daughter that does the same exact thing when she cries.) So she said some reassuring words to me, but I'm not really sure what they were because I was praying so hard for a heartbeat to still be there and the baby to cooperate.

And finally we found it. It seems like we have a little drama king or queen on our hands.

We discussed the ultrasound in the hospital with our doctor and he let us know that things could go either way. In our favor, we have a baby measuring ahead of date (so the placenta is nourishing baby well), a strong heartbeat and an active baby... along with prayers of our family and friends!

But bleeding in pregnancy is always worrisome. It is less worrisome since we have a cause and can monitor it and compare.

My ob went ahead and started the process to get the P17 shots ordered for me. I'll take one every week until I am 32 weeks and then we will discontinue. My doctor chuckled as he said this could be my longest pregnancy ever with the shots.

The shots have to be compounded and approved through our insurance so I should hear more this week about when to come in and have it done. Pray for me, they'll be teaching Brandon how to give me shots. EEKS! I'll be really sweet to him those days.

After we left the OB we got called back because it looked like I had an UTI but the first nurse dumped out the sample. So... I had to go back. I'm now on antibiotics.

My doctor is out of the country on his daughter's spring break trip so, we are praying double that this week is uneventful!

Thursday afternoon, we also found out that Xander's cdiff lab came back negative. The Flagyl is working, which means that it is more likely to be SIBO (Short Intestine Bacterial Overgrowth) which is not contagious.

Xander is doing the best he has in months. The day I came home from the hospital, my aunt had dressed in him blue jeans!!! He has refused blue jeans for quite some time, opting only for stretchy, sweat pant material that he kept low on his waist. He is eating a variety of foods now, eating larger amounts and most importantly, not having ANY diarrhea. In fact, when we tracked his dirty diapers, Solomon and Xander had the same number of dirty diapers in a day.. at the same times!

We are praising God for His mercy. It is so relieving to me to see Xander do well even though we are highly concerned about our wee one as well.

In a move of optimism we chose baby names tonight. In Bee tradition, we will not announce the name until we know the gender. BUT, we may find out sooner this pregnancy than any pregnancy before. I have a follow up ultrasound/peri/OB appt on March 12th and we may get a look at gender.

~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

Downhill Slide..

Saturday night, I was on top of the world. I was determined that we were going to attend church. I desperately needed to be among God's people, in His house, and soak up His word. I have no idea how we lived here 2+ years before finding a church home.

I had barely made it a month.

So I set clothes out, packed diaper bags and went to bed early. I prayed for all distractions and hindrances to move out of the way.

And then I was woken up at 4 am. Nothing was wrong, but I couldn't sleep. I had the most energy I've had in months. I could barely contain myself.

So I blogged. And then I got up and took a shower. And straightened my hair for the first time in so long I lost count!

We went to church and it felt SO good. We were so touched by how many said they missed us and asked how Xander was doing.

I shared how we figured out the Prevacid and had had the best day in a long time just the day before. So many were so happy for us.

And then when I went to pick him up from the nursery we were told that he had two loose diapers.

Hmmmmmmmmmmmmmm...

He was much fussier than he had been at lunch. Brandon and I exchanged worried looks and we both held our breath but his diapers were fine for the rest of the day.

The next morning, he had diarrhea.

And this evening I've changed several diarrhea diapers. *sigh*

After phoning our doctors, we are doing another Cdiff test tomorrow. *sigh* Another clear test would mean that we are dealing with something else. A clear test would mean that this is time for his endoscopy and sigmoidoscopy.

A positive cdiff test means that we put him back on antibiotics and depending how far it has gotten, we may be readmitted. *eeks*

We'll be waiting for those results with baited breath. Either way, something has to give for our guy. SOMETHING has to change for him.

Please pray for wisdom and strength. I can feel the panic starting to rise up within me again.

It was nice feeling normal for Saturday and part of Sunday, but once again I'm reminded just how much things have changed for us. What a cold slap of reality that was.

~Stephanie

Another Loop..

Sunday, we were so excited Xander ate about 10 fresh blueberries. Before all of this craziness, Xander would eat blueberries on top of his coconut yogurt. I thought we were getting somewhere!

And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)

Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.

And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.

Sooooo, blueberries are now on the No No List.

In the meantime, Solomon spiked a fever.

I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.

Sigh...

Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.

We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!

Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.

Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.

So for now we are NOT using antibiotics until we know FOR SURE that we have strep.

In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.

See the circle we can't seem to get out of?

While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.

Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.

While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.

Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.

Tomorrow we will have Xander re-tested to make sure the cdiff is gone.

Here are our big prayer requests:

1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.

Thanks!

Stephanie

Q and A #1

How is Xander handling the hospital stay (laying in bed all day) and all of the pokes and prods? I imagine its hard for him to understand why this is happening...

Interestingly, he isn't laying in bed all day and isn't expected to. He is not allowed to leave his room, but if he wasn't contagious he could leave his room and go to the Child Life room where there are toys and activities for the children.

Xander spends most of his day snuggled in the recliner with either Brandon or I watching TV. He has been brought some toys by the Child Life Department, so he plays too.

He's not been poked since he was in the ER. They drew blood there and put in a heplock in case he needed an IV, but we lost that line on Monday afternoon. So far, we have been blessed to keep him hydrated enough with sprite and pedialyte although there have been moments that it looked like we were headed down the IV road.

The prodding he takes like a champ. The one thing he hates is having his temperature taken under his arm. He willingly allows them to take his blood pressure, listen to his heart, chest and belly sounds and even feel his tummy. How long he tolerates them pressing on his tummy is dependent on how distended his tummy is, of course.

The staff here is fabulous and understand that he is a child, not a tiny adult. For instance, when he was triaged in the ER, the nurse did the entire exam with Brandon standing and holding Xander. Many exams have taken place in our arms, or snuggled in the recliner.

Why didn't you guys go to DC National? It would have been a closer commute for Brandon.

Honestly, we hadn't heard much about DC National. I'm sure lots of people have had a positive experience there, but we also wondered if it was "too close" and if they would just consult the gastro that refused to treat our son. So instead we are 3.5 hours away from home at DuPont.

How did you choose DuPont?

It was the next closest Children's Hospital to us. I also have two friends that highly recommended it, as they have come here with their children. CHOP (Children's Hospital of Philadelphia) is about 30 minutes further than here.

Why didn't you go back to Augusta? Your children are there.

They are there, and they are being well cared for. But it is also 8+ hours from home, and Brandon wouldn't have the ability to go back and forth between work and the hospital. Also, we were concerned we couldn't make it all the way there, in the condition that Xander was in on Thursday night.

How long do you expect to be in the hospital?

No one can answer that yet. Xander is already showing improvement from the cdiff. But, as that clears up, we are going to attempt to address his chronic diarrhea and lack of growth. At the very least we need him to be eating a better diet than what he currently is willing to eat. For example: His current diet is terribly deficient in a variety of vitamins and protein. He is also very low in Vitamin D, so that will need addressed.

Are all of his issues due to the Cdiff? / Great! Now you finally have an answer!

No, all of his issues are not attributed to the Cdiff. Our doctor's best guess is that Cdiff has only been an issue since this past Wednesday and does nothing to explain his lack of growth since June, the chronic diarrhea, food reactions or the previous weight loss so we only have an answer for the acute issues, not the chronic ones.

Did he get Cdiff because of antibiotic use?

Not likely. He's only had antibiotics twice in his life. Once when he was a very small baby due to an ear infection. And again this past October for fluid in his ears. Most of the time we don't use antibiotics for fluid (our doctor's preference), but we were headed out of town for vacation and after we didn't see improvement we went ahead and got the antibiotic called in. According to Dr. Swami, if the antibiotics caused the cdiff, then it should have showed up within 3 weeks. This can be caused by overuse of antibiotics though this doesn't seem to be the cause for Xander.

Instead, our doctor has told us that some people naturally carry Cdiff in their GI tract. Everyone has good and bad bacteria in their GI tract. He thinks that because his GI system was so out of whack, it provided an opportunity for the bad bacteria (cdiff) to take over. In the case of antibiotic use causing Cdiff, the antibiotics kill off the good bacteria, allowing the cdiff bacteria to take over.

Of course, Cdiff is also highly contagious, so there is a possibility that he was infected at the previous hospital. We will most likely not know.

Why are you seeing genetics? I thought this was a gastro issue.

We were originally scheduled to see genetics in Richmond to follow up on the neurofibromatosis work up. We missed that appointment because we were in the hospital. But when the emergency room doctor here heard the whole history, she wondered if maybe, just maybe, a genetic issue or syndrome can tie all of his issues neatly in a bow. The issues include: vitamin D shortage, the diarrhea, the lack of growth heightwise, the losing weight/not gaining, the high TSH, the birthmarks, the fact that he rarely has tears and doesn't seem to sweat at all. He also had a small blood vessel anomaly mentioned in his MRI radiology report and has a small mass in his stomach. She just thought there are too many things "off" and they seem to be spread over several of his systems. She is curious if they are all related.

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I have one more thing I'd like to address. It has been hinted around by various people that this is a downfall of adoption. That we didn't know what we were getting into. Or if we would have known, perhaps we wouldn't have matched with him.

Brandon and I have learned that even with biological children, you have no idea what you are getting into, even healthwise. Our girls have their orthopedic issues. Julianne had respiratory issues as a baby. Health is NOT guaranteed even for biological children.

Even if we knew about Xander's issues beforehand, it wouldn't have made a difference. If you recall, we adopted him knowing that his birth circumstances were less than ideal. We knew that his birthmom's health history was questionable. Also, we thoroughly understood Annalise's issues and we were willing to make that walk as well.

Adopting Xander was NOT a mistake. We have ZERO regrets and we can't imagine our lives without this little guy. He has taught us so much and I can't wait to see what other lessons we will learn through raising him and watching him grow.

Nothing makes me turn into a ferocious mama bear quicker, than to suggest that adopting Xander was a mistake, or using this as a case against adoption. Adoption is beautiful and we are so blessed to have Xander in our lives. We can't imagine our lives without him. We committed to him in April of 2009 and that commitment stands. I will always be his mama, always love him and always fight for him in every way I can. Nothing can change that... ever.

~Stephanie

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.

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