Tuesday, January 24, 2012

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.



Tammy said...

Oh Steph! I am so sorry. Praying for your sweet family. (((HUGS)))

Erika said...

UGH!!! Steph, this is RIDICULOUS! I will absolutely be praying for yall today (as I'm staying home sick myself and have nothing else to do)...poor Xander and poor YALL!

Anonymous said...

So sorry steph i will be praying for you. Cookgirls4

A.W. said...

Steph..I'm praying! This is completely insane. I can't believe how you've been treated. Keep up the mama bear in you..the Lord will give you strength. (((((hugs))))

Amy Bennett said...

I got this link from Facebook from a friend. I've had a daughter with stomach issues for years as well. It's not quite as serious but still, they are allergy related and it constipates her and gives her other stomach issues. I have heard GREAT things about Dr. Andrew Linial. He is a chiropractor but is an expert with allergies. I have heard he can spend 3 minutes with you and can tell what allergy you have and give you things to do that actually make a difference. We are trying to set up an appointment for next month for my daughter to see him. He is so popular he actually moved to the sticks in Georgia so it would be harder for people to get to him. We are planning to travel 4 hours to go see him. Anyway, I know how frustrating it is so I thought I'd pass on his info:


Jennifer Rucker said...

I don't know you, but after reading your posts, I'm n tears. I'm praying for you guys. 'and God is able to do exceedingly abundantly more than all we can ask or imagine'

Trish said...

Reading all of this made me cry, a flood of past emotions! I have been in similar shoes to yours, and I know how frustrated, lonely, and crazy all of this is!!

I'm praying for peace, endurance, answers, and rest.

Debbie said...

Oh sweet mamma! (((((HUGS))))) I am so sorry to hear how hard it has gotten. I am praying.

debbie (momys)