Manny is in the Hospital … Yes. That’s right. I can’t believe how many times I’ve said or typed those words. For perspective, I’ve spent 3 nights total in the hospital without Manny. I wasn’t even BORN in the hospital. So one night with Luke for heart surgery. One with Jacob for kidney biopsy. One with Zoe post cleft surgery. That’s it.
I’ll have to count how many nights it’s been with Manny.
There are several issues going on and several test results we’re getting in. So here are some of the highlights.
1) Currently admitted due to fever and cough. Thursday night he went to be fine and woke up at 4 am with 104.2 temp and horrible cough. So we came in. Still awaiting the results of the respiratory viral panel to see what this is. But so far, it’s kicking his butt. Even with bipap and increased oxygen, he’s having troubles. Last night he was in quite a bit of respiratory distress.
2) We had an ultrasound of the abdominal area. There are two areas of concern:
a. Liver is showing some ‘distress’. This is a change from previous views of the liver. His gallbladder went from fine to “off” to ruptured very quickly. We’re hoping the liver doesn’t do the same thing because you can live without a gallbladder but not without a liver. But we are hoping that maybe it will go slow.
b. Kidney is showing what we are hoping is the formation of stones. I know that’s a strange thing to hope for but it could be worse than that. Stones can be associated with his kidney disease he has … Renal Tubular Acidosis. I found it interesting that he didn’t complain of the whole ultrasound. But he was very adamant that the left kidney area hurt. I didn’t think much of it at the time. The results showed this issue with the left kidney! Hmmm. He knows.
3) His central line. For about a month something is “off”. I used to be able to change his dressing every week. Then it was only 4 days, then 3, then 36 hours, and recently 12 hours. I asked the IV team what they thought. Yesterday, the whole team came and gathered around his bed. We all did a brainstorming session. Quick version … the consensus is that this line is going to have to be pulled. Not today. Not an emergency. But soon. It’s a surgical procedure. So we will talk to the surgeon soon. The concern is … when the current line was placed they said he had no more viable veins on his chest. He would have to have his central line in his leg. I’m horrified at that thought! So praying for there to be new viable veins. Also, while we’re already going to be putting him under, we might want to get a few other surgical procedures done. For example, the metabolic geneticist wanted a more specialized muscle biopsy done. And they might even consider tonsils. (But that’s another whole story.)
4) EMG. He had an EMG done the other day and I hadn’t shared the results yet. Quick version … it’s a test of the nerves to the muscles. It’s expected to have a mild amount of nerve damage. His was significant. For example, one nerve should have been 6 and it was 0.008 So basically non existent. The doctor who was doing the test was a bit concerned and wanted to see the nerves going to the heart and lung. He went to do the test but didn’t have the proper software. That just shows how rarely those nerves need to be tested …he didn’t even realize he didn’t have it. This is important because if the nerves to the heart/lungs are damaged, we will be able to inform the Cardiologist and Pulmonologist and they might be able to devise better treatment plans. Now I’m not positive about this … but this also should explain a few things about his digestive tract. Remember how his tests in Boston showed basically normalish muscles in his digestive tract but it doesn’t work? This could be a plausible answer to why! The nerves to the area are decreasing. It all makes sense. The doctor will give me a full report of the test results that were already done in comparison to other kids with merosin deficiency (otherwise the data are impossible to interpret in a meaningful way). And then he will get us back in to do the other nerves when he has the software.
So basically … there’s a lot going on medically with Manny. We’ve got a few new mysteries but mostly a few new hints and a few point to progression/deterioration, unfortunately.