Thursday, March 26, 2009

Catch and release

After two nights and two days at UNC, we don't know the cause of Will's vomiting spells over the past month. It was probably the worst hospitalization that we have ever had, even though this one didn't culminate in surgery and most of the others have! We are all thrilled to be home. For a night. 'Till we up and move tomorrow...

As I posted the other day, we were in the ER for a while and they did all the typical radiologic tests. Then they did a lumbar puncture (spinal tap) to test his shunt. Will was a rock star through his lumbar puncture. I stayed in the room and held his hand. They numbed the area, then they gave him Versed to make him a little loopy. I didn't know how it would affect Will, but MAN do I wish I had a video camera with me that day. Within seconds of getting the medicine, he started chuckling like Butthead from MTV's Beavis and Butthead. I am not lying. He was hilarious. And he didn't mind being held in a little ball so they could access his spine, and his face showed absolutely no signs that he could feel the procedure being done to him. I think he was sad when it was over and the Versed started wearing off. Here is a picture of loopy Will right after his lumbar puncture.

The lumbar puncture revealed that Will's intercranial pressure was slightly elevated but not to a level where they thought something was wrong with his shunt. But they wanted to admit us for observation. So we were back up on the 7th floor of the Children's Hospital, just like we were when I started this blog!

I talked with the neurosurgeon that night about possible other causes of the vomiting, aside from shunt issues. He planned to talk with his team and get back to me. In the morning, we thought we were waiting around for a consult from the Gastro Intestinal (GI) team, and possibly the Allergy/Immunology team. But the nurse told us around 11am that no consultations had been ordered and we were actually sitting around waiting for neurosurgery to release us.

This did not make me happy. Don't get me wrong, I was thrilled not to have Will in surgery again. But we still didn't know the cause of the vomiting, I really felt as though we should be transferred to another service, even general pediatrics, so they could start digging into some other causes.

The neurosurgeon told me that digging further into this while we were in-patient was "a waste of hospital resources" and that if we wanted to pursue it further, we should talk with our pediatrician about some out-patient follow up work. I yelled at him - just because this isn't a neurosurgery case doesn't mean it doesn't matter! He has been gagging and vomiting seemingly randomly over the past several weeks, he's low weight, this really can't continue. I was answered with a meek "I'll try to call GI."

I was livid. I called Nate, he got on the phone with the hospital patient care line. I called our CP doctor, who also called the patient care line to complain. I spoke with our nurse (who was appalled with the doc's attitude) and he talked with his supervisor, and they together called the head of neurosurgery to file a complaint.

Within 15 minutes, I had a call from the patient care people, and 2 neurosurgeons and a pediatrician in our room.

The neurosurgeons were there to smooth things over. I know both of them well (we don't really know the neurosurgen who caused all the problems) and they know me, so they took me very seriously when I told them that this needed further investigation. Once they did their political duties with me, they left and the wonderful pediatrician stayed with Will and me for about an hour. She took the most complete history ever, talked through some thoughts, asked me what I thought might be going on. She was just great. She ordered a GI and swallow study for the morning, and scheduled us for an allergy study (which isn't done in-patient).

Will wasn't allowed to eat after 4am this morning in preparation for his studies. Nate said Will got up around 2am for a feeding - thanks baby for staying the nights so I could keep my sanity during the days! - and slept right through 4am. His swallow and GI studies were scheduled for 8am. Then around 8:15am, we found out that a couple of emergencies needed the x-ray machines, so we were bumped to 11am. And the worst was that I couldn't feed him again.

So Will and I watched some History Channel, we rocked, we sang, we did everything but talk about food. Nate took Will to his studies, and he did well. The test didn't show any abnormalities, though, just that sometimes Will swallows well and sometimes he sputters. Then they released us, which we were more than ready for.

The next step is to test Will for allergies. I call what he was doing vomiting, but really it seemed like his nose got very congested, and the snot made him gag. Eventually he gagged enough that he vomited. This would happen at random times of day and night, sometimes 3 or 4 days in between episodes. And after the episode, Will would be tired, but it would be over. The episode on Monday night just kept going, which is why we brought him to the ER.

So if he had some kind of allergy which was causing him to become congested, treating it would ultimately end the gagging and retching. We're doing this test soon, which I don't think Will is going to enjoy, but I think it will be worth it. And of course if it isn't an allergenic cause, then chances are, what Will has is every parent's least favorite prognosis - "its a virus."

Luke enjoyed going back and forth to the hospital to see Will and playing around with doors and nurses. He definitely missed Will when he was gone though. Oma told me that on a couple of occasions, Luke would walk around looking lost, just calling out "W-i-o-w... W-i-o-w..." which is how he says Will's name. Sad, but cute at the same time. Here's a picture of Luke testing out Will's hospital crib. Watch out, Little Gym classes turned kids into bona fide monkeys!

And another one, just to remind you how big the boys are now...

And how little they used to be. This is crib is half the size of the ones the boys were in today!

Thanks so much for the thoughts and prayers and well wishes!

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