Hospitalized...

Nope, not Xander.

His mama.

Early Sunday morning, I was sleeping and felt a "pop" and then felt wetness all around me.

I got up and went to the restroom and when I finally pryed my eyes open, there was blood everywhere.

I went back and looked in the bed, and sure enough I had been laying in a large puddle of blood.

I woke Brandon and headed back to the restroom.

He called our doctor's office and our doctor was on call. He said he'd meet me in the emergency room. Brandon and I changed clothes and then Brandon loaded the children in their pajamas into the van.

We rode to the hospital (25 minutes) in silence. I was begging God to please don't make us walk the road of loss again. Later I asked Brandon what he was thinking, and he said he was pleading for the same thing.

When I got the ER they were expecting me and I went straight back. Just a few minutes later my doctor was there.

So far we have no reason for the bleeding. The baby's heartrate was found and I'm not dialating. They did an ultrasound and I didn't have placenta previa or abruption. My amniotic sac was intact and baby had plenty of fluid and was moving. (After we found the heartbeat, my doctor was most concerned the pop I felt was my water breaking.)

My aunt arrived safely last evening and is at our house with the children.

I was admitted for observation for one night but the bleeding never completely stopped. It would lighten and stop shortly only to return later.

Early this morning, I had the worst episode of bleeding since I've been in the hospital. *sigh*

We have heard the baby's heart beat several times a day and so that is reassuring, even when it takes them awhile to find it.

Tomorrow the perinatalogist will be in with an ultrasound tech to do a full scan and check everything out really carefully. I've been told that this will take place around 8-9 am.

*Deep breath* This morning was a bit shocking for Brandon and I. We obviously know that bleeding in pregnancy isn't good and we also know that 14 weeks is too early for baby to survive without being safely tucked in my womb. But to hear the words threatened miscarriage and to be told that I'm basically waiting for the bleeding to stop or miscarry, sucked every breath out of my lungs and I had a long cry after I was told that. My doctor was not harsh with me or uncaring. I still greatly respect him. It was just very hard for us to be told that we are waiting on a miracle and that some pregnancies continue on with great outcomes and some end with bad outcomes. I mean, intellectually I know that, but no one really wants to talk about it, especially with their baby's life on the line.

Brandon has been amazing and so have our friends and church family. This morning Brandon reminded me that we know the One that can provide that miracle for us. We know Him intimately and deeply and He knows us too. He has carefully knit our baby together and loves him or her more than we do. As parents, it is really hard to imagine a love for our children bigger than our own. But God does! God has this ALL planned out. He knows exactly how many days our baby has.

We continue to intercede on our baby's behalf and hope for a long pregnancy, uneventful birth and a lifetime of memories.

~Stephanie

Dr. W...

Last night, I had to raise a ruckus about our lack of care. The medical director (over the attending doctors which are all pediatricians) had been in to see me, and saw the diarrhea diapers. She saw them test positive for blood with her own eyes. She had been on the phone every day this week with the gastro doctor that is "on call" here.

And yet, yesterday, he refused to see us. He sent a message through the attending that we could follow up with him outpatient. I thought that was ridiculous and told everyone we had contact with how ridiculous I thought it was.

I called the number on the medical director's card and was told she would be returning to the hospital to speak with us. Her secretary immediately came upstairs to wait with us.

The medical director was apologetic when she arrived, but said that part of what we are facing is the "limitation of Richmond." This one gastro practice covers all the hospitals here, so even if we were in another local hospital, we'd get the same gastro. And since he was on call there was really no way to reach anyone else.

She said she could call a colleague at UVA but that it would be a phone consult because they do not have privileges here. So there would be no examination of Xander. I told her that was ridiculous.

She said there was a small possibility she could call in a favor and speak with another doctor from the same practice but that he was not on call so he of course has the option of not coming.

I told her that this whole thing was insane. I had a child vomiting, with diarrhea that tested positive for blood and he had dramatically decreased what he was eating and even drinking. I told her if no one could help us here, that we expected a transfer to a major pediatric medical facility outside of Richmond. (Richmond does have a Children's hospital but again, we'd get the same doctor.)

She ended up calling Dr. W and asking for a favor. He said he would be here this morning because he had a lecture here this morning and he would see us afterwards. We were satisfied with that solution.

The patient advocate was the next person in our room, and we let her know how the first doctor had treated us. We filed a formal complaint that will be evaluated by their quality team and their medical team. I also let her know that I fully intend to file a complaint with the medical board and our insurance. Her eyes were bulging out when I told her everything we'd been through here.

This morning, Dr. W arrived and took a full medical history for Xander. He examined him thoroughly. He asked a ton of questions that we answered willingly. He doesn't have any answers yet and he apologized profusely for that. But he is willing to try to find help for us.

He has removed ALL the dietary restrictions because he does NOT feel any of this is allergic in nature. When Xander was first admitted he was on a regular diet minus eggs, soy and milk. Then with the vomiting and diarrhea he was moved to a bland diet. ALL of those restrictions have been removed. Brandon and I are concerned about this, but willing to try. Dr. W thinks that we may have just had a coincidence with those foods. If things go badly, we can rehydrate Xander here.

Dr. W. is going to look back through the records and the history we gave him and see if he can come up with something. Brandon and I feel heard again. The second doctor is honestly the complete opposite of the first doctor. He was thorough, soft spoken, caring, empathetic and reassuring.

Xander's stools do not test positive for blood so far today. He is very fussy though and has a very large, round tummy. I feel like this is the calm before the storm, but we'll see.

This morning, he had lost the little bit of weight he had gained here. And he is still listed as failure to thrive.

Thank you for your prayers. We know and love God and truly believe that He loves Xander even more than we do. As a mama, that is very hard to imagine. In fact, just the other day, a nurse asked about Xander's pregnancy and it took me a few seconds to remember that I wasn't pregnant with him. The love we feel for Xander is great and it is very hard to remember a time without him. We are willing to fight and advocate for him for as long as it takes to get him the help he needs.

Please continue to pray for Brandon and I. We are weary but again, willing to do whatever it takes. Brandon is greatly worried about the emotional and physical stress on me, since I am expecting, so we are praying for God's protection for our sweet, tiny babe. Pray for Dr. W, that he is willing to be a champion for Xander and do whatever is necessary to get us an answer. Pray that Xander feels better soon. And pray for my other three children that are currently in Georgia with family. Solomon keeps looking around for his partner in crime, Xander. My children have never been divided in this way.

I'll continue to update as I am able.

Vomiting and Diarrhea... Again...

This morning at 4 am I woke up to the sound of Xander vomiting. His dinner was recognizable in the vomit... 11 hours after he ate it.

We got him and the linens changed and he went back to sleep.

This morning we did another sweat test for cystic fibrosis and again.. he didn't sweat enough.

This morning he ate very little breakfast. A small sausage patty, a half a piece of toast and a handful of cereal. He refused rice milk.

And then all he wanted to do was rock. If I slowed down the rocking chair he would scrunch up his eyebrows and say, "Rock, mama."

So I did.

For over 2 hours. And then he vomited all over me and him. Again, more chunks of food.

The endocrinologist came in and said that his TSH was only a little high and that it couldn't cause all of this. The plan is repeat that lab in 6 weeks with our regular provider.

And then the diarrhea started. He's had two diarrhea diapers in a little over an hour and a half.

We changed the rice milk to pedialyte and he refused to drink.

The attending doctor came and spoke with me at length about his entire medical history. The immediate plan was that if he didn't drink a cup of pedialyte in 2 hours we would have to re-iv him.

He just finished his second cup. So at least we are holding off on the IV.

But we are back to the drawing board. The attending said she was going to the medical director and back to the gastroenterologist that we consulted yesterday. She is asking for a colonoscopy while we are inpatient.

In the meantime, she is going to speak with other collegues and see if she can come up with something... anything to help us.

At least today I feel heard.

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