Where we go from here...

Jose took Sofia to have the CT of her head on Wednesday morning. I stayed behind with Olivia who was not doing so hot herself. They got in around 11:30 and Sofia was adorned with stickers. An apparent sign that she had done well. This was confirmed by Daddy. He said she had been a big, brave girl... so long as she had a pillowcase over her eyes and couldn't see a thing!

We headed out to the GI consult that afternoon. The doctor (nurse practitioner actually) was very nice and seemed very concerned with getting the details. She talked to Sofia a bit, mashed around on her belly and talked to us about some ideas and plans. We did a test for H.Pylori in their office which was negative. We were half hoping it would be positive so we'd have some answers then and there and would be able to start treatment. But no.

In the end, we decided to start Sofia on reflux meds to potentially help with the pain and to schedule a follow up sonogram which would be more in depth than the one done in the ER on New Year's Eve. And it was decided that the best way to hopefully get answers would be to set up an EGD. Let me impress you here with my nursing skills. EGD is an esophogogastroduodenoscopy. It's one of my favorite medical words to say. Second only to ERCP which is Endoscopic Retrograde Cholangiopancreatography. Fun, huh. But, I digress...

She will have the EGD (scope down the throat to look at esophagus, stomach, duodenum and to obtain samples for biopsies) on Wednesday under general anesthesia. So, we left assuming the worst would be Wednesday. That was not to be.

Thursday was terrible with both girls. Sofia had been remarkably uncomfortable most of the day. Olivia was lethargic, not wanting to eat or play, Just lay on me. I got her down for a nap for a bit and about this time, Sofia really started to crash. I had put a call in to her pediatrician's office and was waiting for them to call back. When they finally did, there was no doubt they could hear Sofia's wails in the background. It was scary. She couldn't move out of the fetal position and couldn't walk. The Nurse said she'd talk to the doctor and call me back. Soon after, Sofia started vomiting uncontrollably and literally screaming in pain. SCREAMING. I sent Jose a 911 message and when he called back he could hear Sofia's screams through the phone. I told him I was getting ready to take her to the ER and to call the ped's office back and demand she be admitted. I was just about to walk out the door when Jose called back to say their doctor wanted both girls in his office right then. So off we went.

At the office, he looked over Olivia at first (who had lost 1 1/2 pounds) and said he believed hers was most likely a stomach virus complicated by dehydration ( for which she ended up the ER a couple of days before and got an IV) and that she should be much better by the next day.

All the while. Sofia was writhing in pain and crying. She looked her over and looked and previous labs and tests and said he needed to call the GI on call (it was after 5). When he came back in he said they had talked and agreed on a medication to help with the stomach cramps and also agreed she needed to head to ER again to rule out a couple of serious things. He also said that he would've liked to have admitted Sofia for pain control, but there were no available beds in the hospital. I headed back toward home with Olivia to drop her off with my grandmother before heading back to the ER to meet up with Jose. Not long after I arrived, they called her name and were ushered into a room that looks seldom used. A quiet nurse came in to ask a few questions and check vitals and then we were left to wait. And wait. And Wait. After several hours, we asked if they had any idea how much longer it would be before she was seen. She came back and told us there were still 10 ahead of us. At this point, I broke down. Something I have been able to control surprisingly well since all this began. We woke up Sofia to dress her to leave. We were planning on taking her to another hospital. I was crying and Sofia was asking why. We told they didn't have time and she said so pitifully, "They don't have time to take a picture of my belly". Again, I lost it. Even my baby knew she needed attention and no one was coming. I am the most patient person would can imagine when it comes to waiting in a doctor's office or even in an ER. I worked as a nurse. I get it. Unexpected things come up, emergencies, complicated cases, consults, etc, all throwing a schedule off. And in the ER, it's not first come first serve. It's based on triage. But when it comes to my baby in severe, acute, desperate pain... All reasoning was out the window.

Within minutes of us threatening to leave, a very nice doctor came in. He also had a 4 year old daughter so at least on some level. I felt he could relate to us and understand out worry. He ordered several more tests and said he thought we'd suffered with this long enough and would order some tests to look for several things. So they did more bloodwork and a more detailed sonogram. She handled it all like a trooper. He biggest complaint was hunger and thirst (as was ours as well!) We promised her anything in the world she wanted when we left. All she asked for was water to drink and Mac & Cheese to eat. She was more excited about that mac and cheese than going home when the time came.

After a while, the doctor came in and told us her blood tests looked basically normal. (Showed some signs of dehydration) Tests for pancreatitis were negative. Liver looked good, no obvious gallstones, no appendicitis and no bowel obstructions. The air in that room thinned in an instant. We were at the same time relieved to hear so many potentially catastrophic things had been ruled out, while at the same time stressed that we still had no answers.

We got home after midnight.

The next day, I got the call that Olivia wasn't doing well. She spent pretty much the next 48 hours on my shoulder. Barely eating, barely playing, barely lifting her head. It's like a sick roller coaster we are on. One goes up, one goes down.

We literally feel paralyzed. Life has come to a halt. Jose and I barely eat, showering is a rare luxury. Seems all we do is comfort children, dose out meds, clean up vomit, bathe children and wash unending laundry. We are in a standstill hoping we turn a corner soon. I honestly don't know how we are getting through it. It's literally putting one foot in front of the other every day. Too busy to notice that we are breaking down on the inside. Too tired to do anything about it. I know so many have it so much worse. So many know their child's diagnosis and wish they didn't. Countless families would trade places with us in a heartbeat. I know and try to remind myself everyday how much worse we could have things. And it sends a shudder up my spine. I've spent quite enough time in the children's hospital as of late and I have more time there ahead of me. With the scariest item left on our agenda. We are scared. Not only about the test itself, but about the answers or nonanswers we may get. This could tell us everything or nothing. This could be the end of this journey or the very beginning.

All I know is we are so tired. Our hearts and heads are heavy with stress and worry. Trying to be as optimistic as possible all the while as realistic as possible. We're ready to get off this ride and just go home and be a happy, healthy family of 4 again.